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from Day 1

A CO MPREHENS IVE G U IDE FOR

Cancer Patients and Their Families

INTRODUCTION

SURVIVOR


A cancer diagnosis starts a new journey – one filled with complex terminology, treatments and emotions.

This guide has been written especially for

you and your family

to help you navigate every step along the way.

This information will help you understand the latest in technology, treatments and research as well as provide you with access to comprehensive education and support. If you have any additional questions, please speak with your health care team.

T HIS BO O K BE L O NGS TO :

NAME:

PHONE NUMBER

© 2013 Lexington County Health Services District, Inc. (Rev. 2/2013)

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LEXINGTON MEDICAL CENTER IMPORTANT PHONE NUMBERS General Information/Main Switchboard ............. (803) 791-2000 Becky’s Place .............................................. (803) 791-2440 1-800-756-4453 Breast Cancer Nurse Navigator ........................ (803) 791-2521 1-800-635-0858 Cancer Program Manager ............................... (803) 936-8050 Financial Counselor ...................................... (803) 936-7397 General Cancers Nurse Navigator ..................... (803) 791-2289 (803) 791-2617 Medical Day Infusion Center ........................... (803) 791-2287 Medical Social Services .................................. (803) 791-2430 Outpatient Social Worker ............................... (803) 939-8774 Radiation Oncology ...................................... (803) 791-2575 Radiology Department .................................. (803) 791-2460 Support Group Network ................................ (803) 791-2800 Women’s Imaging ........................................ (803) 791-2486

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PERSONAL INFORMATION Name:

Date:

Birth Date:

Best Contact Number:

Address:

Emergency Contacts

1.

Phone No.

(Name and Number)

2.

Phone No.

Health Care Provider

Phone No.

W H AT I K N O W A B O U T M Y C A N C E R Type of Cancer:

Date Diagnosed:

Procedure that Determined Diagnosis: Stage of Cancer at Diagnosis:

Date:

Pathological q

Clinical q

Updated Stages of Cancer:

I M M U N I Z AT I O N R E C O R D (record the date/year of the last dose taken, if known) Tetanus:

Allergic To

Hepatitis Vaccine:

Pneumonia Vaccine:

Describe Reaction

Allergic To

1.

3.

2.

4.

Flu Vaccine:

Describe Reaction

E X A M S , S U R G E R I E S , P R O C E D U R E S , T R E AT M E N T S Type of exam, surgery, procedure or treatment (e.g., biopsy, radiation, chemotherapy)

Date

M Y H E A LT H C A R E T E A M Primary Physician:

Phone:

Primary Oncologist:

Phone:

Radiation Oncologist:

Phone:

Surgeon:

Phone:

Nurse Navigator:

Phone:

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CURRENT MEDICATIONS List all medicines you are currently taking. How this form helps you. • Helps you and your family members remember all of your medicines. • May find and prevent concerns by knowing what medicines you are taking. • Provides your doctor(s) and others with a current list of ALL of your medicines. Doctors need to know the herbals, vitamins and overthe-counter medicines you take!

Date

Prescription and over-the-counter medications (examples: aspirin, antacids) and herbals (examples: ginseng, ginkgo). Include medications taken as needed (example: nitroglycerin). 1. ALWAYS KEEP THIS FORM WITH YOU. Take this form to ALL doctor visits, tests and hospital visits. 2. WRITE DOWN ALL CHANGES MADE TO YOUR MEDICINES ON THIS FORM. If you stop taking a certain medicine, draw a line through it and write the date it was stopped. If needed, ask your doctor, nurse, pharmacist or family member to help you keep it up-to-date.

Name of Medication and Dose

3. WRITE DOWN THE NAME OF THE DOCTOR WHO TOLD YOU TO TAKE THE MEDICINE(S). You may also write down the reason you are taking the medicine (e.g., high blood pressure, high blood sugar, high cholesterol).

Directions: Use patient-friendly directions (Do not use medical abbreviations)

Date Stopped

1 Reason for taking:

Doctor’s Name:

2 Reason for taking:

Doctor’s Name:

3 Reason for taking:

Doctor’s Name:

4 Reason for taking:

Doctor’s Name:

5 Reason for taking:

Doctor’s Name:

6 Reason for taking:

Doctor’s Name:

7 Reason for taking:

Doctor’s Name:

8 Reason for taking:

Doctor’s Name:

9 Reason for taking:

Doctor’s Name:

10 Reason for taking:

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CURRENT MEDICATIONS — CONTINUED Date

Name of Medication and Dose

Directions: Use patient-friendly directions (Do not use medical abbreviations)

Date Stopped

11 Reason for taking:

Doctor’s Name:

12 Reason for taking:

Doctor’s Name:

13 Reason for taking:

Doctor’s Name:

14 Reason for taking:

Doctor’s Name:

15 Reason for taking:

Doctor’s Name:

16 Reason for taking:

Doctor’s Name:

17 Reason for taking:

Doctor’s Name:

18 Reason for taking:

Doctor’s Name:

19 Reason for taking:

Doctor’s Name:

20 Reason for taking:

Doctor’s Name:

21 Reason for taking:

Doctor’s Name:

22 Reason for taking:

Doctor’s Name:

23 Reason for taking:

Doctor’s Name:

24 Reason for taking:

Doctor’s Name:

25 Reason for taking:

Doctor’s Name:

26 Reason for taking:

Doctor’s Name:

27 Reason for taking:

Doctor’s Name:

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CURRENT MEDICATIONS — CONTINUED Date

Name of Medication and Dose

Directions: Use patient-friendly directions (Do not use medical abbreviations)

Date Stopped

28 Reason for taking:

Doctor’s Name:

29 Reason for taking:

Doctor’s Name:

30 Reason for taking:

Doctor’s Name:

31 Reason for taking:

Doctor’s Name:

32 Reason for taking:

Doctor’s Name:

33 Reason for taking:

Doctor’s Name:

34 Reason for taking:

Doctor’s Name:

35 Reason for taking:

Doctor’s Name:

36 Reason for taking:

Doctor’s Name:

37 Reason for taking:

Doctor’s Name:

38 Reason for taking:

Doctor’s Name:

39 Reason for taking:

Doctor’s Name:

40 Reason for taking:

Doctor’s Name:

41 Reason for taking:

Doctor’s Name:

42 Reason for taking:

Doctor’s Name:

43 Reason for taking:

Doctor’s Name:

44 Reason for taking:

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Is Your Strongest Ally

UNDERSTANDING CANCER

INFORMATION


UNDERSTANDING CANCER

Table of Contents What is Cancer? ..................................................

2

4

What Causes Cancer? ........................

Different Types of Cancer ....................................

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7

Pathology and Staging ........................

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Information is your strongest ally. Useful Terms to Know Tumor: A tumor is an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumors may be benign (not cancer) or malignant (cancer). There are two types of malignant tumors: solid and liquid. The more common solid tumors, which are cancer cells that form a mass, are named for the type of cells that form them: sarcomas, carcinomas and lymphomas. Liquid tumors are cancers of the blood such as leukemias.

A successful journey starts with several important elements: a doctor whom you trust; strategies to help you cope with your questions and challenges; and the power of knowledge, gained by learning everything you can to face the future with hope and confidence.

Benign Tumor: A benign tumor that is not a cancer does not usually cause serious problems, but may indicate that other cells might behave abnormally.

Malignant cells: Malignant cells are cancerous. They can invade and destroy nearby tissue and spread (metastasize) to other parts of the body.

Metastasize/ metastatic: Metastasize/ metastatic refers to when a cancer spreads from one part of the body to another.

WHAT IS CANCER? When you learned that you have cancer, two questions may have come to mind: “Why?” and “How did this happen?” Why did cancer cells develop? When the normal behavior of affected cells has been damaged, the cells are not growing, dividing and dying in an orderly fashion. Rarely, is it because you inherited some damaged cells from your family. Most often, cancers develop because these cells stop behaving properly due to something in the environment or as a result of random cell activity. While there are some lifestyle habits that reduce the possibility of cells behaving abnormally, the best defenses against cancer are to be aware of changes in your physical make-up, communicate any concerns with your primary care physician, and have the proper screenings and tests performed according to your physician’s instructions. © 2013 Lexington County Health Services District, Inc. (Rev. 2/2013)

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Facing Your Cancer Diagnosis • Talk to your health care team about your cancer, treatment options and any questions you may have. • Ask your health care providers about possible side effects from your treatment.

How are cancer cells created? Every cancer is the result of body cells behaving abnormally, multiplying without control, until they often develop into an abnormal mass of tissue called a tumor. Some cancer cells do not form a solid tumor — these are leukemias, which are found in the bloodstream. While a tumor may be benign or malignant, in almost every case it should be removed so that the doctor can know more about the cell activity and, if malignant, about the stage of cancer. Knowing more about the stage can help the doctor decide on the best course of treatment. Only malignant tumors are cancers. The cells from a malignant tumor may damage nearby organs and tissues, or break away and spread to other parts of the body, a process known as metastasis. This is one reason why early detection is so important — to prevent the cancer from spreading.

• Talk to your family and friends about your concerns, thoughts and emotions. • Ask for help from your family and friends. • If you feel well enough, keep your daily routine as normal as possible by working, spending time with family and traveling. • Think about the activities and events that are most important to you and spend time doing things you enjoy.

Whether you found a tumor during a medical test or self-examination, or if your doctor has identified, through a biopsy or other medical procedure, that you have cancer cells, be assured of two things:

1. 2.

You did not “catch” cancer. If you know someone who has cancer, they could not possibly have given it to you. And your cancer is not contagious. There are treatments available that can be very effective in fighting — and winning — the battle against most cancers.

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WHAT CAUSES CANCER? When someone receives a diagnosis of cancer, it’s natural to wonder why. Why me? How am I different? How can this be? Scientists, researchers and medical professionals are hard at work studying and uncovering the reasons, facts and science behind cancer to answer just these questions. Research has led to notable discoveries in recent years, including genetics, lifestyle factors and environmental exposures that can cause cancer. Is Cancer Hereditary?

Assessing Your Family History If you are assessing your family history of cancer and know relatives have been diagnosed, here are some questions that can help you understand the particulars of each case. 1. Who is it and how we are related?

Many families have felt the impact of a cancer diagnosis. In some cases, the impact has crossed from generation to generation while in others the cause radiates from a common familial lifestyle risk factor such as smoking. Sometimes the cause can be related to a gene abnormality that’s present in affected family members. In these cases, it’s important to remember cancer is not inherited, the gene is and cancer is a disease of abnormal gene function. The American Cancer Society estimates about 5–10 percent of cancers are inherited.

The Roles of Genes Researchers believe genes play two critical roles in cancer. Some genes can cause cancer while others stop development or suppress growth. It’s important to note that healthy genes can change over time. They are not inherited but change due to some sort of exposure to an environmental element such as cigarette smoke, radiation, hormones or diet. Sometimes, however, there appears to be no known cause for the change.

2. What type of cancer? Is it common or rare? 3. What was their age when diagnosed? 4. Was there one cancer in this person or more? 5. Were there risk factors present, such as smoking?

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Get the Facts As research continues, many questions are answered and new questions arise.

Cancer in Relatives If multiple family members are diagnosed with cancer, it’s important not to jump to conclusions. A portion of many types of cancer are linked to family history including breast, ovarian, prostate and colon cancers; the cause, however, may be a common exposure to a toxin or simply chance. While a shared gene mutation is in most cases unlikely, there are characteristics and traits that are present if an abnormal gene is the source of cancer in the family, including: • Multiple cases of a rare cancer such as kidney cancer. • Cancer appearing at an unusually young age. • Multiple cancer types appearing in one person. • Cancer in a pair of organs such as the eyes or breasts.

In any case, it’s important to get factual information about cancer and causes from your doctor and from other reliable, credible resources. One such resource is the American Cancer Society.

You can access information day or night by calling 1-800-227-2345 or visiting www.cancer.org.

• Appearance of childhood cancer in siblings. There are key considerations that can help you evaluate if cancer runs in your family. Cancer in a close relative (parent or sibling) is more cause for concern than in a distant relative. The chance of passing on a gene mutation becomes more unlikely with distant relations. It’s critical to assess your family history on each side separately. It is significant information if cancer appears on either side of the family multiple times. If two people in your family have been diagnosed — one related to your mother and one to your father — it’s meaningful information but not as concerning as a case where siblings on one side of the family have been diagnosed with cancer.

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Finding Support • Dealing with cancer can be challenging, but it is important to remember that you are not alone. • Share your experiences and concerns with cancer survivors who have experienced similar issues. • Talk to your health care team about your concerns and ask if they can direct you to additional resources. • Many people can provide help and support. • Discuss your feelings and emotions with your friends and family. • Seek spiritual help from religious leaders or through prayer, reading or meditation. • Join a support group.

DIFFERENT TYPES OF CANCER Each type of cancer can grow at a different rate and respond to treatment differently. That is why cancer patients need treatment that is targeted at their specific kind of cancer. Not all tumors are malignant (cancerous). Noncancerous or benign tumors do not spread throughout the body and are usually not life-threatening. Carcinomas are the most common type of cancer. These tumors occur from the cells that cover external and internal body surfaces. Lung, breast, colon and prostate are the most frequent carcinomas in the United States.

Sarcomas are cancers that arise from cells found in the supporting tissues of the body such as bone, cartilage, fat, connective tissue and muscle. Lymphomas are cancers that show up in the lymph nodes and tissues of the body’s immune system. Leukemias are cancers of the immature blood cells that grow in the bone marrow and tend to gather in large numbers in the bloodstream. Most diagnosed cancers are considered sporadic cancers. These tumors are from environmental exposures or even random events within a cell. Only tumor cells have mutations in sporadic cancer. People with hereditary cancer inherited a gene mutation that is present in every cell in the person’s body. The altered gene can be passed on to children.

Familial cancer refers to cancers that run in a family. These cancers may be due to shared environment or lifestyle factors such as diet and exercise. Solid tumors are an abnormal mass of tissue such as sarcomas, carcinomas and lymphomas. Liquid tumors are cancers of the blood such as leukemias. The primary site is where the cancer starts. From there, it can spread (metastasize) to other places in the body. No matter where a cancer may spread, it is always named for the place it began. For example, breast cancer that spreads to the liver is still called breast cancer, not liver cancer.

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Grading Tumors

PATHOLOGY & STAGING How health care providers learn about cancer Your oncology team needs to know details about your cancer before selecting or starting treatment. Pathology departments, or pathologists, gain key information such as the location of the cancer, if it has spread and its cell type through a series of tests. Pathology A pathologist studies a cancerous tissue sample or It’s important to tumor to investigate the type of cancer cells, the size, understand your if it has invaded nearby tissue or if it has spread to unique cancer other places in the body. The pathologist also “grades” pathology. It can explain why some the cancer. This numeric grade measures how treatments are abnormal the cancer cells appear. recommended or The pathologist uses visual, microscopic and how a treatment is other advanced testing to analyze the tissue. When expected to work. tests are complete, he or she compiles the results into a detailed report. This report — called a pathology report — documents your cancer in detail. To gather these details, a pathologist looks at tissue to record how it looks, its color, texture and other traits. If your sample is a tumor, a pathologist will use a microscope to look for a positive or negative margin. A positive margin means the tumor edge has cancer cells. That suggests other cancer cells may remain in the body and can require more surgery. On the other hand, a tumor with a negative margin indicates there are no cancer cells at the tumor’s edge. All of these tests help doctors choose the most beneficial treatment. A pathology report has important, reliable data. It documents your cancer, its structure, where it came from, how samples were gathered, test results or markers, and includes a summary diagnosis.

Each tumor receives a grade ranging from 1 to 4. The tumor grade, also called a histologic grade, describes how abnormal cancer cells look when examined under a microscope. Cancer cells that look like normal cells usually grow slowly. These cancers are called low grade, well differentiated or grade 1. Cancer cells that look abnormal are called high grade, poorly differentiated or grade 3 or 4. It’s important to know that different cancers have different grading scales. For example, prostate cancer is graded from 2 to 10. Whatever the grading system, low numbers generally mean less-invasive forms of cancer. High numbers indicate rapid growth. The tumor grade of some cancers such as breast, prostate, brain, lymphoma and soft tissue sarcoma can highly affect the expected outcome.

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TNM Tumor System Primary Tumor (T) TX: Primary tumor cannot be evaluated T0: No evidence of primary tumor Tis: Carcinoma in situ (abnormal cells are present but haven’t spread and may not be cancer) T1, T2, T3, T4: Denotes the size and/or extent of primary tumor

Regional Lymph Nodes (N) NX: Regional lymph nodes cannot be evaluated N0: No regional lymph node involvement N1, N2, N3: Number of lymph nodes involved and/or extent of spread

Distant Metastasis (M) MX: Distant metastasis cannot be evaluated M0: Cancer has not spread within the body M1: Cancer has spread within the body

Staging Cancer is staged with another number that indicates its advancement. Cancer staging systems range from 0 to 4 (or Roman numerals 0, I, II, III or IV). Stage 4 cancers are the most advanced forms of the disease. The stage number is based on three key factors. First, where and how large is the primary tumor? Second, how many tumors are there? Lastly, has the cancer spread or metastasized to other organs or body tissue including the lymph nodes? One of the most common staging methods is called the TNM Tumor System. The T stands for the extent of the tumor. The N represents the extent it has spread to the lymph nodes. And finally, M is the extent it has spread within the body. Each letter is paired with a number to denote the size of the tumor and how much it has spread. The meaning of letters and numbers varies from cancer to cancer, so ask your doctor about the staging system that’s specific to your cancer.

Regardless of your cancer’s stage or grade, it’s critical to understand your cancer and why your doctor recommends a specific treatment. Your health care team will provide you with detailed information to help you make informed decisions about your health. TUMOR SIZE

2cm* peanut-sized

3cm* grape-sized

5cm* walnut-sized

7cm* lime-sized

*Sizes are approximate © 2013 Lexington County Health Services District, Inc. (Rev. 2/2013)

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BEGINNING BEGI of Your Journey

AT DIAGNOSIS

The


AT DIAGNOSIS Table of Contents Tests for Cancer..................................................

3

2

Treating Cancer ................................

Living with Cancer .............................................

3

The National Comprehensive Cancer Network Guidelines ..........................

4

Communication ..................................................

7

5

Your Health Care Team......................

Support Programs ............................................

10

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Mammogram/Mammography: This X-ray of the breast can detect abnormal cells in their earliest stages, even before any symptoms are felt.

MRI Scan: Instead of radiation, MRI uses strong magnets to create images of your body’s brain, spinal cord, head, neck, bones and muscles. An MRI can sometimes distinguish a benign tumor from a malignant one. Nuclear Scan: Radioactive material

TESTS FOR CANCER Identifying your cancer, establishing its stage and monitoring treatment is stressful. Some of your worry may be caused by not knowing what to expect when you arrive for a test, such as how long it may take and what the test results will mean. You should feel confident that these procedures have been safely used for years and the results will help members of your health care team plan the next steps in your cancer treatment. Of the following tests, your doctor will advise you which ones need to be done — and when — to achieve the most accurate diagnosis or results:

Blood Test: Blood is drawn with a needle or by pricking your finger. This test checks for general health, cancer in the blood cells and chemicals called “tumor markers,” which identify certain cancers. The test may monitor blood counts during treatment.

Biopsy: A way to get a sample of tissue or fluid for examination and diagnosis.

Bone Scan: A nuclear scan that notes new areas of bone growth or breakdown and can show a doctor if cancer has spread to the bones.

Colonoscopy: Used to identify and locate suspected polyps or tumors in the colon, a colonoscopy makes it easy to perform biopsies while checking on abnormal cells or lesions.

precisely locates the presence, size and location of tumors in organs, tissues and bones.

PAP Test/PAP Smear: An internal, non-surgical examination that provides a way to examine cervical tissue for cancer or other abnormal cells.

PET Scan: Effective in identifying fast-growing cancer cell locations, this nuclear scan uses a form of radioactive sugar.

Stool Test: A simple lab test done on a self-provided sample to check for blood in stool. Ultrasound: High-frequency sound

CT Scan: More detailed and accurate than an X-ray, these computer images show organs and tissues, and define a tumor’s shape, size and location, as well as the blood vessels that feed the tumor. Comparing CT scans during the course of treatment make it possible to assess the effects.

Endoscopy: A non-surgical procedure that views the internal organs and shows polyps or masses in the digestive tract.

waves produce 2-D images of the body’s soft tissues that can help in diagnosis and guidance of treatment procedures. Sound waves can tell the difference between fluid-filled cysts and solid tumors.

X-ray: A film record of the presence, size and location of tumors in organs, tissues and bones.

Some of these tests are quickly done in your doctor’s office. You may need to visit the hospital for others. It’s also important to know if you need to bring someone with you to any of these tests, in case you shouldn’t drive home afterward.

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LIVING WITH CANCER

TREATING CANCER Your health care team may recommend several different types of treatment. Some treatment options include: • Surgery – Surgery is an option to biopsy or remove a cancerous growth. • Radiation – Radiation uses energy waves to shrink or destroy cancer cells. • Chemotherapy – Chemotherapy uses powerful medicines to attack fast-growing cells such as cancer. But these cells are also found in the bone marrow, hair follicles and the digestive system. Some side effects occur when chemotherapy attacks normal fast-growing cells.

A cancer diagnosis can provide an opportunity to make lifestyle changes that improve your overall quality of life, especially if the diagnosis is made early. As you deal with aspects of your treatment plan, you will learn to focus on healthier habits and your overall health. Proper nutrition, smoking cessation, avoiding alcohol, exercising and learning how to properly respond to your physical needs, such as pain management, will help you live better in the future.

Your health care team may select a chemotherapy treatment based on the type and/or stage of cancer you have, whether you have had chemotherapy before and any other pre-existing conditions. • Stages – The stage of your cancer describes the size of a tumor, whether there is cancer in your lymph nodes and if the cancer has spread from the original site to other parts of the body. Refer to the Understanding Cancer section of this guide for more information on pathology and staging.

• Expectations

– Your doctor will receive the results of any diagnostic scans or tests usually within a week of the procedure. Only your doctor can “read” your report to you. The person doing the test submits it to a specialist (often a radiologist or pathologist) for review. Your doctor will then review your results to plan the next step of your treatment.

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The National Comprehensive Cancer Network Guidelines The National Comprehensive Cancer Network (NCCN) Guidelines® establish a national standard of care for cancer patients. By identifying a standard of care, these guidelines can help physicians recognize which treatments work best and provide step-by-step courses of action to deliver the best care for patients. The NCCN Guidelines are the most complete and frequently updated clinical practice guidelines in medicine. Recommendations are based on clinical trials and the experience of nearly 900 well-known panel members from 21 NCCN institutions. Panel members are experts in different fields of medicine, such as medical oncology, radiation oncology, radiology and surgery. NCCN physicians believe that the treatments within these guidelines are useful for the majority of patients; however, because each patient has his or her own medical history and circumstances, not every treatment in the NCCN Guidelines will benefit every patient. If a treatment is not in the NCCN Guidelines, there is insufficient evidence to include the treatment as a standard of care. Ultimately, the NCCN guidelines cannot replace the expertise and clinical judgment of your physicians. Fred Hutchinson Cancer Research Center/ Seattle Cancer Care Alliance Dana-Farber/Brigham and Women’s Cancer Center Massachusetts General Hospital Cancer Center

Roswell Park Cancer Institute Huntsman Cancer Institute at the University of Utah UCSF Helen Diller Family Comprehensive Cancer Center Stanford Cancer Institute

City of Hope Comprehensive Cancer Center UC San Diego Moores Cancer Center

NCCN Member Institutions

UNMC Eppley Cancer Center at The Nebraska Medical Center

University of Colorado Cancer Center

Robert H. Lurie Comprehensive Cancer Center of Northwestern Univeristy

Siteman Cancer Center at Barnes-Jewish Hospital and Washington Univeristy School of Medicine

University of Michigan Comprehensive Cancer Center

The Ohio State Univeristy Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute

Memorial Sloan-Kettering Cancer Center Fox Chase Cancer Center The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins

Duke Cancer Institute

Vanderbilt-Ingram St. Jude Children’s Cancer Center Research Hospital/ The University of Tennessee Health Science Center University of Alabama at Birmingham Comprehensive Cancer Center The University of Texas MD Anderson Cancer Center Moffitt Cancer Center

City of Hope Comprehensive Cancer Center, Los Angeles, CA Dana-Farber/Brigham and Women’s Cancer Center Massachusetts General Hospital Cancer Center, Boston, MA Duke Cancer Institute, Durham, NC Fox Chase Cancer Center, Philadelphia, PA Huntsman Cancer Institute at the University of Utah, Salt Lake City, UT Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance, Seattle, WA The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL

Memorial Sloan-Kettering Cancer Center, New York, NY

University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, AL

Moffitt Cancer Center, Tampa, FL

UC San Diego Moores Cancer Center, La Jolla, CA

The Ohio State University Comprehensive

UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco, CA

Cancer Center - James Cancer Hospital and Solove Research Institute, Columbus, OH Roswell Park Cancer Institute, Buffalo, NY Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine, St. Louis, MO

University of Colorado Cancer Center, Aurora, CO University of Michigan Comprehensive Cancer Center, Ann Arbor, MI UNMC Eppley Cancer Center at The Nebraska Medical Center, Omaha, NE

St. Jude Children’s Research Hospital/The University of Tennessee Health Science Center, Memphis, TN

The University of Texas MD Anderson Cancer Center, Houston, TX

Stanford Cancer Institute, Stanford, CA

Vanderbilt-Ingram Cancer Center, Nashville, TN © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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Join a support group

COMMUNICATION Open communication with your family members, your friends and your health care team is an important way to gain information, reduce concerns and increase confidence in your chosen path. Make sure you ask questions and get answers. Be aware and honest with those closest to you; they cannot understand your fears and your successes if you do not share how you feel. Confiding in people you trust will make it easier when you have difficult decisions to make or need reassurance during and after treatment. You will need to speak with your employer; how much you choose to share is up to you, but they are entitled to know what your diagnosis will mean to your employment plans.

Talking with Your Physician & Health Care Team A team of trained professionals will be helping and supporting you as you deal with cancer. Each of these professionals has specific skills that you may need. They will answer your questions and guide you while you are on this journey. Open communication with your health care team is essential. Your physician is a key player on your team and your relationship is important. You can ask your doctor questions or communicate any concerns. He or she is here to listen to you and answer any of your questions. Think about, “How much do I want to know?” We all learn at our own pace and you are the only one who knows how much information you want to know. Some people feel that more information gives them more control, while others don’t want all the details. Be open with your doctor about how much you want to know. Your loved ones may also want to be informed and talk with your health care team. Your team is bound by law to keep all your health care information private. They will not discuss your information with anyone unless you give your approval.

While nobody is in exactly the same situation, there can be great comfort gained from sharing information with people who are familiar with the new experiences and unfamiliar territory in which you find yourself.

Sharing the News • Talking about your diagnosis may be a difficult conversation. • Think about your own feelings about your cancer diagnosis, why you are telling the other person and how you hope they will react. • Choose a time and location that will make you feel comfortable when sharing the news. • Be prepared for a range of reactions. • Let your friends know that it is okay to talk about your cancer diagnosis. People don’t know what to say, so give them permission to do their best. • It is important to talk about your cancer diagnosis with children and teens in your family. Involve children based on their age and coping skills.

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Asking Questions

Helpful Advice • Prepare a list of questions before each appointment. • During your visit, take notes or ask if you can record any discussions. • Bring a friend or family member to your appointments to help you keep notes and remember your questions. • Ask questions if you don’t understand. • Discuss any side effects you experience during treatment. • Ask your health care team which side effects or symptoms you should call about during office hours and which are emergencies. • Always be honest and don’t hide information that may help your treatment.

The best way to remember questions is to write them down before you go to the doctor’s office and write down the responses. It is easy to forget questions and answers when the information is all new to you. It helps to have the same person with you on your appointments because they can help you write down questions and answers. They can also talk to your friends and family so that you don’t have to deal with a lot of questions. Your health care team may use words or give you an answer that you don’t understand. Ask the question in another way or ask for something that you can take with you to look over later. If you would like to seek a second opinion from another specialist, discuss your options with a member of your health care team.

Write down any instructions from your doctor and make sure you understand the answers before you leave the office. If you have a question, call someone on your health care team.

Questions to Ask Your Doctor About Treatment • What chemotherapy drugs will be used and how will they be administered?

• What type of cancer have I been diagnosed with? • What stage is my cancer? • What will my treatment be? • Is this the standard recommended plan for my type of cancer?

• Where will I receive my chemotherapy treatments? Can I drive myself there?

• What is the goal of treatment?

• Are there side effects that I will feel quickly and others that may appear later?

• Will my treatment plan include multiple forms of treatment at once?

• Do you have suggestions for coping with side effects?

• What are the benefits of undergoing treatment? • What are the risks of treatment?

• How long will side effects last? Will they stop when my chemotherapy is finished?

• Do you know of any clinical trials for the type of cancer I have?

• How serious are the side effects?

• Will I get chemotherapy? If so, how long will each treatment last? Will I get a break between each treatment?

• At what point should I call my doctor or nurse if I am having trouble with side effects?

• Are there any other treatment options?

Even though you have an expert health care team around you, you and your loved ones decide what is best for you. As part of the team, you play a key role in your health care. © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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YOUR HEALTH CARE TEAM Dealing with a cancer diagnosis means that you will be at the center of a health care team. This health care team includes specially trained and skilled professionals who are there to support you, answer your questions and help you learn about your treatment options and how to get the most benefit from these treatments. Primary care physicians are doctors who

Nurse navigators are registered nurses who help cancer patients

manage a person’s health care over time. A primary care doctor is able to give a wide range of care, including prevention and treatment, discussion of cancer treatment choices and referrals to a specialist.

and their families navigate through diagnosis, treatment and recovery by providing education and emotional support, and helping to identify resources in the community. This service is available to all Lexington Medical Center cancer patients at no cost Patients may be referred by their physician or a nurse, or may self-refer by calling a nurse navigator.

An oncologist is a doctor who specializes in treating cancer. Some oncologists specialize in a particular type of cancer treatment. For example, a radiation oncologist specializes in treating cancer with radiation.

Nurse Practitioners are advanced practice nurses who provide high quality health care services similar to those of a doctor. They diagnose and treat a wide range of health problems using a unique approach that stresses both care and cure. Besides clinical care, nurse practitioners focus on health promotion, disease prevention, health education and counseling. They also help patients make wise health and lifestyle choices.

Radiologists use an array of imaging technologies (such as X-ray radiography, ultrasound, computed tomography (CT), nuclear medicine, positron emission tomography (PET) and magnetic resonance imaging (MRI)) to diagnose or treat diseases.

“Having a nurse navigator meant the world to me. She took away a lot of the unknown and the fear when diagnosed. She went to appointments with me, helped me ask questions, gave me literature and helped me join the support group. She was there when I had treatments and surgery. I don’t know that I could have done it all without her there to hold my hand!”

~ JoNell (Breast cancer)

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Lexington Medical Center Nurse Navigators Libby Daniels, RN, OCN • (803) 791-2289 Libby’s nursing career began more than 25 years ago at Lexington Medical Center. A graduate of Midlands Technical College with an associate degree in nursing, she received nurse navigator certification in 2011. Libby is a certified oncology nurse who was inspired to become a nurse navigator after her parents both survived cancer. She understands the fears and frustrations of a cancer diagnosis and serves as a resource for cancer patients and their families.

Kelly Jeffcoat, RN, BSN, OCN, CBCN • (803) 791-2521

“I was impressed when I heard from my nurse navigator so soon after I learned that I had cancer. With my new diagnosis, I didn’t know what questions to ask, but my oncologist and the patient book really helped me find the answers. My nurse navigator made me feel at ease, so I knew I could turn to her and my team with any concerns.”

Kelly, a graduate of Midlands Technical College, received her nursing degree from Lander University. A breast health specialist, she is also certified for oncology care and breast care. Kelly has been a nurse navigator for more than 10 years and works directly with breast cancer patients. Shortly after becoming a nurse navigator, she was diagnosed with breast cancer. Kelly’s treatment and survival gave her invaluable experience that she shares with patients and their families every day.

Jennifer Peagler, RN, BSN, OCN • (803) 791-2617 A certified oncology nurse and past Palmetto Gold recipient, Jennifer received her nursing degree from the University of South Carolina Upstate. She teaches the Oncology Nursing Society’s chemotherapy/biotherapy course and is president of the Riverbanks Oncology Nursing Society. Jennifer became a nurse navigator to help patients beyond the traditional role of bedside nursing. She’s proud to help patients cope with serious decisions and make a difference in their lives each day.

~ Lexington Medical Center cancer patient.

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YOUR HEALTH CARE TEAM (Continued) Depending on your treatment plan, one or all of these technologists may be part of your team: A medical technologist is a health care professional who performs diagnostic analysis on a variety of body fluids. A radiologic technologist is a medical professional who applies doses of radiation for imaging and treatment.

A surgical technologist is a health specialist who provides support for the conduct of invasive surgical procedures.

Therapists are important parts of the treatment team, working to stop disease from progressing or contributing therapies that increase a patient’s comfort.

Social workers are trained

The most important thing you can do is talk to your health care team. Talking with your team will make it easier for them to support your decisions, understand your circumstances and help you to keep your goals front-and-center in your journey.

professionals who talk with people and their families about emotional or physical needs and find them support services. Your caregiver helps you most on a personal level. Other team members may include nurses, a pathologist, surgeon, pharmacist, clergy, dietitian, vocational counselor, and psychologist or psychiatrist.

Keeping a journal can help you identify and cope with your emotions. A notebook with your thoughts and feelings may make it easier to identify questions you have for your health care team and help you to remember steps you’ve taken that made it easier to cope. Many studies have shown that writing about your thoughts and feelings can help you feel more positive and contribute to better physical well-being.

• Place your journal where you can see it every day.

• Write as much or as little as you want.

• Write in a quiet place. If you find this difficult, any location is okay.

• Share your journal with others or keep it private.

• Dedicate about 20 minutes a day to writing. • Feel free to skip a day if you do not have anything to say or if you are busy.

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SUPPORT PROGRAMS Setting Priorities Some people find that their cancer diagnosis causes them to change what’s important to them. Your priorities may change because: • You have new goals. • You have a different view on life.

Dealing with cancer, both during and after treatment, is a unique experience for each individual. One common thread, however, for all people with cancer is the need for a good support system. CANCERcare Free, professional support for anyone affected by cancer. Call 1-800-813-HOPE (4673) or visit www.cancercare.org.

Living with Change

• You want to avoid stress.

Weekly support group for families and caregivers to people with cancer. For more information, contact Donna Peele at (803) 791-2033.

• You want to spend more time on other things.

Look Good ... Feel Better

• You have less energy.

This may cause you to make changes in your job, goals or relationships with family and friends.

Presented in collaboration with the American Cancer Society, the National Toiletry and Fragrance Association, and the National Cosmetology Association. Offered six times a year, this class helps women deal with the cosmetic effects of cancer treatment. Participants receive a gift box of makeup appropriate for their skin tone. For more information, contact Kelly Jeffcoat at (803) 791-2521.

Losing is Not an Option If you notice your priorities changing, it may be helpful to: • Think about your priorities and write them down in a journal. • Discuss changes in your priorities with those closest to you. • Join a support group to talk with others about how cancer has changed your priorities.

Open to all adult cancer patients and their caretakers. Meets weekly. Call (803) 939-8774 for more information.

Lung Cancer Support Group Even though lung cancer is the most common cancer worldwide, those affected by it often feel alone. This monthly support group gives lung cancer patients, survivors and caregivers the opportunity to find support, share experiences and learn about available treatment options.For more information, contact Jennifer Peagler at (803) 791-2617.

Lymphedema Support Group A monthly support group for people who experience lymphedema as a side effect of cancer treatment. For more information, contact Kelly Jeffcoat at (803) 791-2521.

Sharing Hope For women who are experiencing recurrent or metastatic breast cancer. Meets monthly. For information, contact Kelly Jeffcoat at (803) 791-2521.

Us TOO A monthly prostate cancer support group open to men, their significant others and men who are interested in prostate health issues. Contact Deirdre Young at (803) 936-8050 or visit www.ustoo.com.

Woman to Woman A breast cancer support group that meets monthly. Please contact Kelly Jeffcoat at (803) 791-2521 for more information. © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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OPTIONS

BEFORE TREATMENT

ConsideringYour


BEFORE TREATMENT Table of Contents Dealing with Your Emotions .................................

2

2

Medications .....................................

Complementary and Alternative Options ................

7

3

Pain Management..............................

Preventing Infections ...........................................

8

8

Financial Matters ..............................

Legal Matters .....................................................

9

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DEALING WITH YOUR EMOTIONS

T R E AT M E N T

Your reaction to a cancer diagnosis may take one or many forms. And every emotion is valid and justified, throughout the range of shock, sadness, anger, fear or dismay. Some of these emotions can be powerful motivators to help you in the journey ahead. The first response to hearing a cancer diagnosis is usually shock and disbelief, followed by anxiety with symptoms of depression. You will adjust as you learn more about your options and your treatment plan begins to form. During this time, it is not uncommon to experience insomnia, oversleeping, weight loss or loss of appetite.

For your own sake, do not deny or ignore your feelings, but share them with those who can help you work through them or use them to address and deal with upcoming challenges. With a new cancer diagnosis, these feelings are normal. If feelings of hopelessness persist, however, this can indicate more serious distress and you should speak with your health care team.

YOU MAY ALSO FEEL:

Sad

Unfocused

FATIGUE Indecisive

Restless IRRITABLE

MEDICATIONS Just as you should follow through on all recommended tests and screenings, your doctor has prescribed medications that must be taken as instructed. Check with your doctors before taking any medications they did not prescribe, even over-the-counter medicine, to be sure it will achieve the desired result without conflicting with your current medications. If you have side effects, be sure to tell your doctor. There may be an alternative medication you can take. As with all prescriptions, take your medications until the end of the term for which they are provided. Do not adjust any dosage unless you speak to your doctor first. Tracking each prescription on the Universal Medication Form (located in the Introduction section) will also help your doctor and other health care team members determine what medicines work best for you with the fewest side effects. Š 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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T R E AT M E N T

COMPLEMENTARY AND ALTERNATIVE OPTIONS With the rising incidence of cancer and growing list of treatments, other cancer management options have also appeared. Some are valid methods to help alleviate stress or symptoms while others are nothing more than scams. Complementary therapies such as yoga, meditation and tai chi are used with standard medical treatments. Alternative therapies are unproven and used instead of accepted medical treatment. Though these options may help in some ways, you should talk to your medical oncologist in order to understand the full safety and utility of any therapy.

Proven Treatments As far as science is concerned, new treatments are ineffective until they are proven to be effective. Some treatments may have shown promise in lab studies but, when the time came for human testing, they fizzled out. Drug company claims, success stories and marketing are not effective ways to improve treatment; clinical trials, however, are. These studies are carefully designed, supervised and reviewed by leading experts in cancer treatments.

Clinical trials build evidence The process often starts with lab studies, then moves to animal studies and last, human testing. All of this happens before any large-scale clinical testing in humans, which will show whether or not a treatment is effective in the human body. The results of one clinical trial or test are not enough to prove a treatment is useful. Any treatment will be rigorously tested and measured over time to prove its safety and utility. Study results are carefully assessed and measured against other tests to inform treatment. They may affect how or when a treatment is used.

Research and Investigational Treatments Tests that are currently being studied through clinical trials are in a research or investigational phase. Volunteers help researchers establish whether a treatment works and if it is safe for use in patients. Therapies found to be safe during initial studies move to clinical trials. If the benefits surpass the risks of the treatment, the FDA may approve it for patients. Once that happens, it becomes available to everyone for regular use. For more information about clinical trials, please visit the American Cancer Society’s website at www.cancer.org and search for “clinical trials.”

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Clinical trials build evidence (continued)

Complementary Methods The following complementary methods can help you ease side effects or pain, and simply help you enjoy your life more. • Acupuncture • Aromatherapy • Art therapy • Biofeedback • Labyrinth Walking • Massage Therapy • Meditation • Music Therapy • Prayer & Spirituality • Tai Chi • Yoga If you have questions about other alternative or complementary therapies, discuss them with your health care team.

If a treatment has been tested using strict guidelines and found to be safe and effective, it’s considered to be a proven treatment. Doctors and medical professionals may access these studies through peer-reviewed journals. Before a study is accepted for publication in a peer-reviewed journal, other doctors or scientists in the field study it. This method of testing is called evidence-based and, once proven, the treatment is generally adopted into mainstream medicine. You may hear mainstream medicine classified in other ways including standard treatment, or conventional, allopathic or Western medicine. These treatments are generally approved by the U.S. Food and Drug Administration and bear language that identifies them as “FDA approved.”

Therapy Options: Basic Terms and Explanations There are many treatments and therapies in use today. Here are some of the most common complementary therapies that exist in the cancer and medical world, including a few that can prove harmful for patients seeking valid therapy options. Whatever the therapy option, it is absolutely critical to discuss any complementary therapy with your health care team before starting or using it.

Complementary Therapies Some therapies are used along with standard medical treatments. They may provide relief from treatment side effects, cancer symptoms or boost overall well-being. Many patients turn to therapies to aid with nausea, stress and pain. These methods, which include massage therapy, relaxation and food-based therapy, have also been referred to as supportive care.

Integrative Therapies Some proven mainstream treatments are linked with complementary therapies in very specific combinations. More and more cancer treatment clinics and centers are offering these types of therapeutic options, which have shown benefits for patients.

Alternative Therapies Some patients opt to bypass mainstream medicine for other options called alternative medicine. These treatments are either untested or have been tested and proven as ineffective. Some alternative methods are actually harmful and even unhelpful. If you are considering an alternative therapy, be sure to discuss the risks with your health care team first.

Unreliable or Unsupported Treatments Some treatments have been tested and disproven, or found ineffective for use for a given condition. Sometimes these treatments make claims to help a certain condition or type of cancer but there are no studies or research to support such a claim. © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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Quackery and Fraudulent Therapies There are some who promote outright false or unproven methods. These therapies, which often buck accepted science, may be based on nothing more than one person’s theory or one patient’s experience. This form of medicine is called “quackery” and in many cases also boasts to cure a multitude of diseases. And then there are those who seek to do nothing more than make money by offering false hope or useless treatments. These deceptive people may peddle treatments that don’t work. While testing may have disproved a treatment’s use, a seller knowingly claims it will help you. In fact, some fraudulent treatments can actually harm you. If you come in contact with a fraudulent provider, treatment or dietary supplement, share your experience. If it’s a questionable treatment or supplement, contact the FDA. You can find them in the phone book in the Health and Human Services section or contact them online at www.fda.gov. If the promotion or marketing of a treatment is in question, contact the Federal Trade Commission at www.ftccomplaintassistant.gov to report deceptive advertising.

Therapy Options: Assessment Before opting for a treatment not based on medical evidence, consider these questions.

What claim is being made? If the claim is relief from a side effect, that may be true. If the claim is to cure a complex disease such as cancer or some other difficult-to treat-disease, this is almost always impossible. What are the provider’s qualifications? Is a medical doctor experienced in cancer care offering it?

Has the therapy undergone legitimate testing? Did the providers report side effects or subject findings to testing by peers or scientists? How did you learn about the therapy? Did it reach you through a reliable scientific or medical journal, or in the back of an entertainment magazine or late-night TV commercial?

Even with all the therapy options covered previously, you may come across other terminology used to describe treatments that are not considered “mainstream.” Some use the label nonconventional, non-traditional or unconventional. They may use different terminology but, at the core, what’s being offered is complementary or alternative therapy. On the other hand, complementary mindbody therapies such as meditation, art and music therapy are totally safe. Methods of massage therapy and acupuncture have come into wide use with no requirements for testing. Amazing cures or experiences at the hands of unconventional therapy cannot be thought of as proof. There are far too many variables that are best answered by controlled studies, which take time.

Therapy Options: Use Making the decision to include alternative or complementary therapies in your program must include your doctor or health care team. Share any methods you are considering before starting them. There are many ways to safely and effectively use a variety of therapies in conjunction with standard treatment protocols.

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Therapy Options: What to Avoid These American Cancer Society guidelines can help you spot questionable providers and treatments: • Does the treatment promise to cure all cancers? • Are you being told to avoid standard medical treatment? • Does a treatment claim benefits with no side effects? • Is it classified using terms such as breakthrough, miracle cure, secret ingredient or ancient remedy? • Does only one person or clinic offer the treatment? • Will you be required to travel to another country? • Are there personal stories but a lack of scientific evidence? • Does the promoter attack the medical or scientific community? If something sounds too good to be true, beware. It likely is. Before moving ahead with anything, have a conversation with your health care team so you can be fully informed.

Therapy Options: Safety Complementary or alternative therapies can be difficult to evaluate. Laws do not require them to be tested nor are dietary supplements tested like prescription and over-the-counter medicines. Some assume these types of treatments are safe and effective because they have been used for years and years. Some may wrongfully credit a therapy for curing a symptom or disease that actually went away on its own. Some people simply want hope. Patients opting for unconventional therapies may delay treatment, which allows cancer to spread inside the body. Some therapies can cause serious problems or death. Even too many vitamins of a certain kind can increase the risk of cancer or illness. Some products may simply make claims and use language that’s outside of or in violation of FDA rules. We may never fully understand a particular therapy’s risks. If one person experiences a particular side effect or suffers, it may not be linked to a particular therapy. That’s why testing occurs in large groups. In some circumstances, problems are never reported to the FDA so some therapies persist and fly under the radar. Products such as nutritional supplements are generally regarded safe until there is a problem. Unlike drug makers, who must have proof of effectiveness and safety before going to market, supplements may be sold without proving anything.

Therapy Options: Resources Your first line of defense should always be your health care team. They are most familiar with your diagnosis, treatment plan and care. Beyond them, only trust information from credible resources. The widespread use of the Internet makes it far too easy to share falsehoods and sell false or ineffective treatments. One excellent resource for information is the American Cancer Society. You can reach them online at www.cancer.org or by phone at 1-800-227-2345. Another excellent resource is the National Cancer Institute. You can reach them online at www.cancer.gov or by phone at 1-800-4-CANCER (1-800-422-6237) or via TTY at 1-800-332-8615. © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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The Cause

PAIN MANAGEMENT If you are in pain, talk to your doctor. It’s not something you have to just bear as a part of your life.Your doctor can help you understand why you might be having pain and what you can do about it. Don’t wait until pain becomes severe. Talk to your doctor about your pain and medication use or concerns.

Pain can result from a tumor that may be pressing on nerves, organs or bones, or the cause may be from a diagnostic test or from your cancer treatment.

Communication

Finding Relief

It’s helpful to be able to clearly describe your pain in common ways. These questions can help you communicate how much pain you are having and where.

There a few ways you may be able to find relief from pain.

• Where and when do you feel pain?

Medication Use

• On a scale of zero to ten, how severe is your pain? (Zero indicates no pain, ten indicates severe pain.)

You may be able to take over-the-counter medications such as acetaminophen, ibuprofen or aspirin to control pain. More severe pain may call for prescription medications such as opioids, antidepressants or steroids. Addiction to pain medication is very rare when medications are taken as directed. You should always talk to your doctor or nurse before taking any medication.

Other Techniques Relaxation techniques such as meditation can offer calmness and some level of pain relief. Biofeedback, hot or cold treatments, and acupuncture or acupressure are other pain management options.

• Are there words that can describe your pain? (Stabbing, burning, pulsating, etc.) • Does anything make your pain better? • Does anything make your pain worse?

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PREVENTING INFECTIONS When you have cancer, your immune system does not work as well as it should. Some of your treatments could also affect your ability to fight infections. Boost your immunity with some simple guidelines that are good for everyone to follow: 1. Wash your hands often, using soap, for 15 to 30 seconds. 2. Get a flu and/or pneumonia shot, if recommended by your doctor. 3. Avoid being close or having contact with someone who has a cold or the flu. 4. Cook eggs, meat, fish and poultry thoroughly according to Food and Drug Administration Food Safety standards.

FINANCIAL MATTERS When it comes to your health, it is best to keep stressful elements to a minimum. Financial matters, when approached and properly put in order, can be one less stress factor in your treatment plan. One of your first concerns may be whether or not you can continue working while you go through treatment. This decision should be made between you and your physician. Your employer’s position is determined by the Family and Medical Leave Act of 1993 and the Americans with Disabilities Act, both of which can give you valuable insight as to your rights and options when you consider your ability to continue working. In addition, your health insurance plan may or may not cover some treatments, tests, medications, etc. For your own peace of mind, become familiar with the sections that pertain to cancer so you can worry less about the financial demands that may be involved during treatment. Assistance may be available for financial and medical needs through government and private organizations, such as: • Medicare or Medicaid • Social Security • Veterans’ benefits • Community and faith-based organizations

Be sure to tell your doctor if you have symptoms of an infection including sore throat, stuffy or runny sinuses, fever, chills, chest pain or shortness of breath.

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Advance Directives

LEGAL MATTERS Often legal matters are one of the most neglected areas in our personal planning. But even without a life-changing diagnosis, it is wise to have certain advance medical directives and other legal documents in order. • A living will provides written directives regarding health care and quality-of-life decisions. • A will encompasses personal property.

• A durable power of attorney enables a trusted friend or family member to make decisions about your health in the event that you are unable to do so for yourself.

The Guest Services department at Lexington Medical Center can help patients create a Health Care Power of Attorney or a Living Will. These documents, known as advance directives, will provide instructions as to who can make decisions about your health care if you are unable to communicate your wishes. All of the Guest Services’ staff are notaries and can also serve as witnesses. If you have any questions or would like to schedule an appointment to discuss advance directives, please call the ActionLine at (803) 791-2342.

Preparing these documents with the help of a legal representative can reassure you that you are in control of certain events in the future. Inform your caregiver as to the whereabouts of these documents in case you are ever unable to access them yourself. For examples of advance medical directives, please see pages 13-21 of the Resources section at the back of this binder.

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Your Treatment

TREATMENT

TARGETING


TR E AT M E N T Table of Contents Radiation Oncology ....................................... Hormonal Therapy ........................

4

Surgery ..................................................... Chemotherapy .............................

5

Targeted Therapy .......................................... Cancer Treatment Studies .............

11

Stem Cell Replacement ................................ Treatment Side Effects .................

12

Nutrition During Treatment .......................... LMC Clinical Nutrition Services ....

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Years of studies have provided a variety of strategies to combat cancer. As these tests and trials have advanced, they have created more effective, targeted treatments. Today’s patients usually have a range of proven treatment options. And the list continues to grow.

Radiation Oncology Team Radiation Oncologist A physician who is specifically trained in treating cancers with the use of radiation Radiation Nurse Assists the radiation oncologist in medical/surgical procedures Radiation Quality Reviewer Ensures that the treatment prescribed is accurately reflected in the medical chart and medical charges Radiation Therapist Delivers the prescribed treatment and assists the patient before and after each treatment session Radiation Physicist Calibrates the treatment machines to ensure that the dose delivered accurately reflects the prescription and customizes the radiation beams according to the radiation oncologist’s plan Radiation Administrative Assistant/Transcriptionist Transfers pertinent information between physician offices and schedules all necessary tests Radiation Dosimetrist Computes the dosage of radiation prescribed

RADIATION ONCOLOGY Radiation oncology treats cancer and certain benign diseases with radiation by using high-energy X-rays to damage the DNA of cells, killing cancer cells or stopping them from reproducing. Both normal and diseased cells are affected, but most normal cells are able to recover quickly. In order to give normal cells time to heal and reduce a patient’s side effects, radiation treatments are typically given in small daily doses, five days a week. Radiation oncology is commonly combined with surgery, chemotherapy, hormone therapy, immunotherapy or some mixture of the four. Most common cancer types can be treated with radiation. Radiation may be delivered by a linear accelerator outside the body (external beam radiation) or from radioactive material or sources placed in the body near the cancer cells (internal radiation, also called “brachytherapy”). External beam radiation consists of high-powered X-rays that are directed by the linear accelerator at the tumor from different angles around the patient’s body. © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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Dealing with Stress If you are feeling stressed, you may: • Have headaches • Feel tired or achy • Have nightmares • Become forgetful

For patients receiving radiation medicine, it is important to understand that each treatment is tailored to that person and side effects and outcomes vary. When a patient is recommended for radiation, a team of professionals are involved in educating, prescribing, planning and delivering the treatment. Intensity-modulated radiation therapy (IMRT) This is an advanced technique that delivers precise radiation treatments. Computer-controlled X-ray accelerators distribute radiation doses to malignant tumors or areas within the tumors. This technique improves the ability to shape radiation doses to 3-D volume with highly tailored computing applications. The radiation dose intensity is elevated near the gross tumor volume while radiation among the surrounding normal tissue is decreased or avoided completely, allowing the tumor to receive maximized doses.

It’s important to find healthy ways to cope, including: • Doing light exercise • Practicing breathing and relaxation techniques • Praying or meditating • Doing an activity you enjoy • Writing in a journal • Talking to a therapist, friend or family member • Attending a support group • Getting a massage

Image-guided radiation therapy (IGRT) This therapy helps to deliver radiation treatments to the patient more accurately. High-quality images (X-rays or CT scans) enable the radiation team to see the area that needs treatment. Adjustments in position can be made to compensate for millimeter changes in organ movement, changes in tumor size or location. © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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HORMONAL THERAPY This treatment affects the interaction of sex hormones — androgens and estrogens — and cancers. Hormone therapy can work with other treatments and is mainly used to treat prostate or breast cancer patients. If a cancer is growing using estrogen supplied by a woman’s body, drugs such as tamoxifen and aromatase inhibitors can block an estrogen-making enzyme in women who have undergone menopause. Taken for at least five years, these drugs are known as Femara® (letrozole), Arimidex® (anastrozole) and Aromasin® (exemestane). Men with prostate cancer can undergo androgendeprivation therapy to lower the amount of testosterone in the body. Anti-androgens can be used if other hormonal therapy is not working. More radical options such as removal of the ovaries and testicles also halt production of sex hormones.

SURGERY Surgeons can operate to remove cancer or tumors that have not spread to other places in the body. Not all surgeries are drastic. Minimally invasive surgeries may be the most effective in some cases. Laparoscopic Surgery This minimally invasive surgery is often just as effective as traditional surgery. Surgeons use a thin, flexible camera and tools through small incisions to remove a tumor. Most patients prefer this type of surgery. It can offer a faster recovery, fewer complications and a shorter hospital stay.

Video-Assisted Thoracoscopic Surgery (VATS) Thoracoscopy is also called “video-assisted thoracoscopic surgery”. It is a lessinvasive surgical technique used to diagnose and treat problems in your chest. During this surgery, a tiny camera (thoracoscope) and surgical instruments are inserted in the chest through small incisions. The thoracoscope transmits images of the inside of your chest onto a video monitor, guiding the surgeon during the procedure. VATS can be used for many purposes, ranging from a biopsy to removal of tumors or entire lobes from the lung.

Radiofrequency Ablation (RFA) This outpatient surgery uses heat to kill tumor cells. A surgeon inserts a thin needle into the tumor, then heats the tip of the needle to kill the cells. Another option, called “cryoablation,” freezes then thaws tumor cells to destroy them. © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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Treatment Expectations • You may receive chemotherapy treatment at a doctor’s office, clinic, hospital or at home. • If you are going to receive chemotherapy infusion, ask a member of your health care team how long your infusion may take.

CHEMOTHERAPY Chemotherapy is a common type of cancer treatment you may encounter that uses drugs. Many people call it simply “chemo”. The powerful drugs stop or slow cancerous cell growth. Unfortunately, chemotherapy treatments are so strong they can affect healthy cells, too. Normal healthy cells that divide quickly — like those found in the mouth, intestines or the ones that control hair growth — can be damaged during treatment and cause side effects. Thankfully, many of these side effects improve once chemotherapy ends.

• Many patients are bored during chemotherapy, so bring some activities you enjoy or a friend or family member to keep you company. • Some people receiving chemotherapy experience side effects, but not everyone. • It is important to talk to your health care team about any side effects you experience. They may be able to treat the side effects or change the medication to reduce your symptoms.

Doctors select chemotherapy with different outcomes in mind. Chemotherapy works alone or in conjunction with other treatments to: • cure cancer; • control the spread or growth of cancer cells; • ease pain or pressure caused by a tumor; • improve effectiveness of radiation or targeted therapy;

• reduce a tumor’s size before surgery or radiation (called “neo-adjuvant chemotherapy”); • destroy remaining cells after surgery or radiation (called “adjuvant chemotherapy”).

Certain factors affect which type of chemotherapy is used; namely, the type of cancer, whether a patient’s had chemotherapy before and if a patient has other health issues such as diabetes or heart disease.

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Delivery of Intravenous (IV) Chemotherapy Central venous catheters are also known as vascular access devices. Some catheters are inserted peripherally in the arm. Others are threaded into a larger vein in the chest. Catheters are placed to reduce the number of needle sticks, administer several medications at one time and prevent damages to a vein. Catheters are also used for frequent treatments and continuous infusion therapy. CATHETER: A small tube placed by a surgeon or interventional radiologist. One end of the catheter is inside the body and the other end is outside the body. It can be used for chemotherapy and intravenous medications or to draw blood. A peripheral inserted central catheter (PICC) is placed in the arm. A tunneled central venous catheter is located in the chest. These catheters can stay in place for weeks or months. PORT: A small, round plastic or metal disc in the chest area placed by a surgeon under the skin in a large blood vessel. Intended for long-term use, ports are used to administer chemotherapy and draw blood.

Chemotherapy Treatment Locations and Schedules You can receive chemotherapy treatments in a variety of locations ranging from your home to a hospital stay. You may also receive treatments in a doctor’s office, a clinic or in a hospital’s outpatient department, which means you get to go home after your treatments. Wherever you’re treated, you’re monitored.Your doctors and nurses will watch to see if you have side effects or if the drugs need to be adjusted. Many factors affect the length of treatment.Your doctor will consider what type of cancer you have and its degree of advancement. Other considerations include treatment goals, the type of chemotherapy being used and how your body reacts to it. Some people receive chemotherapy treatments followed by a period of rest. This is called a “cycle” and gives the body time to build new healthy cells. You shouldn’t miss a single dose of treatment, but side effects can affect your treatment schedule. If that happens, your doctor or nurse will work through it with you.

Treatment Delivery Chemotherapy can enter the body in a number of ways. Chemotherapy is applied on the skin or swallowed in pills and capsules. Patients may receive injections of chemotherapy in a muscle or fatty part of the body. Some patients are treated in a vein or directly in the artery feeding the cancer (called “intraarterial” or “IA”) or within the peritoneal cavity, the area of the body that holds the intestines, stomach and liver (called “intraperitoneal” or “IP”). IV chemotherapy comes through a thin needle usually placed in a vein on your arm or hand.You can also get treatment through catheters and ports that are commonly aided by internal (under the skin) or external (outside of the body) pumps. The pump controls how much chemotherapy enters the body as well as the speed of delivery.

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Treatment and Everyday Life Chemotherapy treatments affect some people more than others. Important factors such as overall health, chemotherapy type, dosage and how advanced cancer is will affect how you feel after a treatment. While there’s no way to know how you’ll feel, many people feel fatigued. That’s why it’s a good idea to have someone drive you to and from treatment. Plan to rest afterward, too. That may mean getting extra help with meals or child care for a day or so. Chemotherapy treatment may stir up a range of feelings. Many patients feel anxious or helpless while others are angry or depressed. All of these feelings are normal. There’s no right or wrong way to feel. Coping with cancer and chemotherapy is hard. Fatigue may complicate feelings. Try to relax and get some light exercise. Talking about feelings with someone you trust is helpful, too. There are many support groups that exist for patients — even some for specific types of cancer. If you’re excessively worried or if your feelings seem out of control, be sure to share what’s happening with your doctor or nurse. You might be able to work during chemotherapy if you feel up to it. It’ll depend on your profession and if you have flexibility in your schedule. Talk to your employer about options such as working from home or even part time.

(chemotherapy-induced nausea & vomiting)

Many employers are subject to laws that help their employees if they are undergoing cancer treatment. Learn more by talking to a social worker.

• Exercise may help to improve your appetite. Talk to your health care team about an exercise plan.

Coping with CINV

• Try to eat several small meals throughout the day instead of two or three large ones. • If you feel ill in the morning, nibble on dry, bland foods such as cereal, toast and crackers before you get up.

• Skip sweet, fried and fatty foods. • Eat foods cold to reduce strong smells. • Choose caffeine-free teas, flat ginger ale and cool, clear unsweetened juices, such as apple or white grape juice. • Eat a liquid meal replacement to help you get enough vitamins and nutrients. • Avoid lying flat for at least two hours after eating.

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Prescription, Vitamin & Supplement Use It’s critical your doctor or nurse approve ALL of the drugs you take. A new medication — whether it’s prescription or over-the-counter — or even a nutritional supplement can change how chemotherapy works. Before beginning treatment, your doctor needs to know drugs you regularly take. Bring in pill bottles or make a list with drug names, reasons for taking them, dosages and dosing schedules. A form has been provided for you to keep track of all medications and supplements. It is located in the first section of this binder. Always talk to your doctor or nurse before taking any of the following:

According to American Cancer Society Guidelines • The use of vitamins, minerals and other dietary supplements during cancer treatment remains controversial. For example, it may be counterproductive for survivors to take folate supplements when receiving antifolate therapies such as methotrexate. • Because of emerging evidence of detrimental effects from even modest use of dietary supplements in the oncology population, many cancer experts continue advising against taking supplements during and after treatment.

• Herbs • Minerals • Vitamins

• Dietary supplements • Over-the-counter medications • Prescription medications

Treatment Progress Your doctor will do tests to see how treatment is progressing. You’ll be asked how you feel and may undergo blood tests and X-rays. It’s important to know that the severity of side effects has nothing to do with effectiveness of treatment. You may read or hear otherwise, but side effects are not a true indicator of how well or poorly treatment is fighting your cancer.

Treatment Expense and Insurance Coverage It’s hard to predict the cost of cancer treatment. It depends on the type of chemotherapy used and the dosage. Where you get it, and how long and how often you are treated also matter. Sometimes the area of the country you live in is a factor. If you have health insurance, talk to someone with your health plan before treatment begins. That way you’ll know what’s covered and what’s not. Ask questions such as: • What will my plan pay for? • Do I have a deductible to reach before insurance starts to pay? • What will I have to pay for? • Will I have to pay a co-pay (small fee) at every appointment? • Do my doctor or I need to call for authorization before every treatment? • Can I see any doctor or is there a list of preferred providers? • Does it matter where I get my prescriptions? • Does seeing a specialist require a written referral? © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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TARGETED THERAPY Treatments called “targeted” or “biological” therapy target cancer cells’ genes and proteins. Often combined with traditional chemotherapy, patients may experience less severe side effects such as a rash or serious heart-related side effects. Types of Targeted/Biological Therapy Angiogenesis Inhibitors These drugs shut down the tumor’s blood production, starving it of its ability to survive and grow. It either targets a protein secreted by the tumor or a receptor on blood vessel cells that forms new blood vessels in the tumor. Avastin® (bevacizumab), the first FDA-approved angiogenesis inhibitor, is approved for use with chemotherapy for advanced colorectal, some lung and kidney cancers, as well as glioblastoma. Other treatments include: • Thalidomid® (thalidomide) — multiple myeloma • Votrient® (pazopanib) — kidney cancer • Revlimid® (lenalidomide) — multiple myeloma

• Nexavar® (sorafenib) — kidney and liver cancer • Sutent® (sunitinib) — kidney cancer and gastrointestinal stromal tumors (GIST)

Proteasome Inhibitors These drugs, such as Velcade® (bortezomib), block multienzyme complexes to treat mantle cell lymphoma and multiple myeloma.

mTOR Inhibitors These drugs block a key cell protein — rapamycin (mTOR) — that regulates cell growth and survival. Afinitor® (everolimus) and Torisel® (temsirolimus) are mTOR inhibitors used to treat advanced kidney cancer.

Tyrosine Kinase Inhibitors These drugs block enzymes critical to cancer cell life. The drug Gleevec® (imatinib) has revolutionized care for patients with chronic myeloid leukemia (CML) and GIST. Many patients respond well to the oral medication, which blocks production of an abnormal protein (bcr-abl) and has fewer side effects than traditional chemotherapy. CML patients also have two additional drug therapies available: Sprycel® (dasatinib) and Tasigna® (nilotinib).

Whether used alone or combined, these treatments are designed to eliminate as much cancer as possible with little impact on the healthy areas of the body. With ongoing trials and research, treatments will continue to evolve and advance.

Other treatments include: • Tarceva® (erlotinib): non-small-cell lung cancer and pancreatic cancer • Tykerb® (lapatinib): used with Femara for advanced HER2-positive breast cancer and estrogen-positive advanced breast cancer

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Types of Targeted/Biological Therapy — Continued Monoclonal Antibodies Scientists have been able to create antibodies for decades. When developed in the mid-1970s, the first monoclonal antibodies, also called “MoAb” or “MAb”, were made of mouse cells. Today’s MoAbs are partially human, wholly human or fragments of antibodies. The FDA has approved these MoAbs to treat the following cancers: • Arzerra® (ofatumumab) — chronic lymphocytic leukemia

Immunotherapy These drugs stimulate the body’s immune system and drive production of cancerkilling T-cells. Naturally occurring cytokines increase T-cell activity and signal additional production. Cytokines can be produced in a lab and used to treat melanoma and bladder and kidney cancers. Therapeutic vaccines are used to “program” the immune system to attack cancer cells while ignoring healthy tissue. While many therapeutic vaccines are in clinical trials, there’s only one FDAapproved therapeutic vaccine, Provenge® (sipuleucel-T). This vaccine is used in the treatment of advanced prostate cancer.

• Bexxar® (tositumomab) — non-Hodgkin’s lymphoma (radioactive antibody-based drug) • Erbitux® (cetuximab) — advanced colorectal and head and neck cancers • Herceptin (trastuzumab) — HER2-positive breast and gastric cancers ®

• Rituxan® (rituximab) — non-Hodgkin’s lymphoma and some leukemias • Vectibix® (panitumumab) — advanced colorectal cancer • Yervoy® (ipilimumab) — advanced melanoma • Zevalin® (ibritumomab tiuxetan) — non-Hodgkin’s lymphoma (radioactive antibody-based drug)

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Clinical Trial Participation Participation in clinical trials is especially encouraged by the National Comprehensive Cancer Network, which believes that the best management of any cancer patient is in a clinical trial.

CANCER TREATMENT STUDIES Sometimes people are asked to participate in research studies or clinical trials. You may even find one yourself and ask your doctor about participating. These tests study new chemotherapy treatments, other types of treatments and other drug combinations to find more beneficial therapies. At Lexington Medical Center, clinical trials give our physicians the opportunity to more actively shape patient care. Physicians who participate in clinical research fully explain the trial process, treatment options and alternatives to patients, and obtain appropriate consent. Patients gain access to promising new treatments before they are widely available by participating in a clinical trial. New treatments, however, must be deemed safe and effective through carefully developed and closely monitored studies.

Before agreeing to participate, learn some basics about the study. • First, are there benefits of receiving a new treatment or drug? • What are the risks? • Will my insurance pay for it? Check with the National Cancer Institute’s Cancer Information Service to learn more about cancer research and clinical trials.

STEM CELL REPLACEMENT Stem cells are the only cells in the body that can become different, more specialized cells such as brain cells and red blood cells. They can also function as “repairmen,” repeatedly dividing to replenish certain cell types. Studies are under way to determine if stem cells can play a role in cell-based diseases such as cancer. While these studies began in 1998, research is still in its earliest stages. Scientists are testing many types of stems cells to see if any can contribute to curing certain diseases. Researchers hope that they hold a key to solving several cell-related health and medical issues. © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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Helpful Advice • Eat and drink smaller servings more often. Rather than eating

three large meals per day, aim for five or six small meals. Try to drink 64 ounces of fluid every day; that’s four 16-ounce cups. • Allow time for rest during the day. Sometimes just sitting

quietly for 15 minutes can be a big help. If you decide to nap, try to keep it short (no more than an hour) so it doesn’t affect your nighttime sleep. Try to limit activities and let others help you if you feel fatigued. • Talk to your health care team.

Fatigue could be caused by anemia (when blood is low on red blood cells). Ask your doctor or nurse about medications that can help to raise your energy level or improve your appetite. • Aim for a minimum of eight hours of sleep each night.

This may be more sleep than before you started treatment. You may find you sleep better at night if you’re more active during the day.

TREATMENT SIDE EFFECTS Even just a few years ago, treatment side effects were an accepted part of therapy. Today there are strategies to reduce their impact and, in some cases, even prevent many of these problems from happening in the first place. Fatigue This is one of the most common complaints during and after cancer treatment. Some people feel a little tired, while others experience severe fatigue. Factors such as anemia, pain, loss of appetite, sleep quality, stress, medications or pain can make fatigue feel worse. Fatigue can happen suddenly or over time.

Kidney and Bladder Problems Some forms of chemotherapy can damage the kidneys and bladder. You may experience burning or pain during urination, excessive urination or loss of control when urinating. The color of urine can also change to orange, red, green or dark yellow, and have a strong odor.

• Stay active, but don’t overdo it.

Research shows exercise helps curb fatigue and can improve nighttime sleep quality. Easy walks, bike riding or lowimpact exercise classes are great ways to be active without straining your stamina.

• Drink plenty of fluids. This helps your kidneys

flush chemotherapy drugs through your body.

• Try to avoid caffeinated beverages such as

coffee and soft drinks.

• If you have any urinary or bladder problems,

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Loss of Hair (alopecia) Another place in the body with fast-growing cells is hair follicles. Chemotherapy and radiation can damage these cells, causing hair loss and changes when hair grows. Depending on the type of treatment, patients experience everything from no hair loss to total hair loss. Eyebrows, nose hairs and eyelashes may even fall out. Hair loss can be permanent or temporary. Chemotherapy-related hair loss only occurs while taking the drugs. And radiation-related hair loss may be permanent. Obviously, this can be very traumatic. In most cases, hair begins to grow a few weeks after treatment ends and can grow back as early as a few months after your last treatment. Your new hair may feel and appear very different than before treatment. Talk to your health care team about your potential for hair loss during treatment. It will depend on the type of treatment you have as well as the dosage.

BECKY’S PLACE Becky’s Place, located at Lexington Medical Center Park One, is a specialized boutique that helps women with their appearance throughout and following cancer treatment. The caring staff understand the importance of feeling confident and comfortable with your appearance. They are specially trained and provide one-on-one assistance to help you look and feel your best. Some of the services and products offered include: • Hair alternatives, including a large selection of hats, scarves, wigs and head-wraps; • Fashion advice and scarf-tying classes; • Breast prostheses, fitted by a certified fitter; • Bras, swimsuits and other specialized apparel for women who have had a mastectomy and/or lumpectomy; • Non-metallic deodorants and skin care products.

Helpful Advice • Be gentle to your scalp. Use

mild shampoo and gently pat hair dry rather than rubbing it vigorously. Don’t dye hair or use harsh products or treatments such as curling or straightening irons, hairspray, hair dryers or elastic hair bands and clips. • If you’re considering a wig, look for one that matches your current hair in color and style.

If you have health insurance, the wig may be covered if you have a prescription for it. • Sometimes hair loss is easier to manage if you cut your hair short or shave your head. This

gives you more control and may make the adjustment less dramatic. • If you have hair loss, do what feels best. You may choose to

wear a scarf or revel in your baldness. If you opt to shave your head, use an electric razor or have a professional clip it for you. Afterward, be sure to protect your head and scalp from the sun and cold.

If you have any questions about how Becky’s Place can help you, please visit or call (803) 791-2440 or 1-800-756-4453. © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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Helpful Advice • Visit the dentist before beginning treatment. Start treatment with

the healthiest mouth possible. If you’ve already started treatment, talk to your doctor or nurse about the best time to go to the dentist. Be sure your dentist knows about your cancer and treatment. • During treatment, check your mouth for sores or spots each day. If you notice

something unusual, tell your doctor or nurse. • If mouth pain becomes an ongoing problem, talk to your dentist and your doctor or nurse about stronger options for relief. • Do not consume tobacco and alcohol products. Keep

your mouth, teeth and gums clean. Brush after meals and before going to bed with an extra soft toothbrush. If that’s uncomfortable, try foamtipped or cotton swabs that can be easier on teeth and gums. If toothpaste is a problem, try using a mixture of baking soda and water to clean your teeth.

Mouth and Throat Problems Cancer treatment targets fast-growing cancer cells. That means healthy fastgrowing cells are affected by treatment, too. The cells of the mouth, lips and throat are common places patients experience side effects. Some people may feel as though their mouth is dry or they may lose their sense of taste. Others may experience a rise in infections or more sensitivity to food temperatures.

Nerve Injury Some medications can damage the small nerves found in feet and hands. This is called “neuropathy”. It can develop during treatment or even years later. Neuropathy affects small places such as a finger or toe, or large areas like an entire foot or hand. It may go away as the small nerves heal, but some medications can cause permanent damage. Patients may feel what’s called “sensory neuropathy” — loss of the nerves needed for touch, temperature and pain. Some may experience clumsiness, balance problems or muscle weakness, a problem called “motor neuropathy”. • If you begin to feel symptoms of neuropathy, it’s important to tell your doctor or nurse. You may need medication or your treatment plan may need to be modified. • Be careful when using sharp or dangerous objects such as scissors. You may also want to use a thermometer to verify the temperature of bath water.

• For the best traction, choose footwear with rubber soles. Sneakers and tennis shoes are often good, comfortable choices. • Take care not to fall. You may need to add slip-proof bath mats and rugs in your home. When walking, take your time and use handrails. Canes and other devices can help you steady yourself when walking.

• If your mouth is sore, keeping your mouth moist may help.

Sucking on sugar-free candy or ice chips can relieve soreness. • You can also change your diet.

Try easy to eat and swallow foods such as mashed potatoes and scrambled eggs. Take small bites or purée foods so they’re easier to eat. Try to avoid hot, spicy or salty foods and highly acidic foods such as tomatoes and citrus. © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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Helpful Advice • Talk to your doctor or nurse about sexual limitations and birth control options. You can

also talk about medications that may help sexual problems you may experience.

Male and Female Sexuality Treatment affects male and female sexuality in different ways. Both sexes may experience a loss of interest in sex during treatment. Physically, chemotherapy can damage a woman’s ovaries, which affects hormone production and regulation. With hormone irregularities, women can experience uncomfortable vaginal dryness or early menopause. Men can lose their ability to get or maintain an erection while undergoing chemotherapy. This impotence is often caused by nerve damage or decreased blood flow to the penis. In addition, chemotherapy can damage sperm and appear in semen, so it’s important for men to use a condom during sex. There’s no way to know if you’ll experience sexual side effects.Your history, type of chemotherapy and overall health are important factors. Some problems may improve once chemotherapy has ended. Because certain cancer drugs may affect fetal development, health care providers strongly recommend that men and women who are sexually active and scheduled to undergo cancer treatment discuss necessary birth control precautions. In some cases, patients may need to use sperm-banking and fertility-preservation therapies before beginning any treatment. Ask your medical oncologist about your birth control and reproductive options.

• Women may prefer wearing cotton underwear and using water-based lubricants to offset any vaginal dryness. Women

may also experience hot flashes so they should dress in layers when possible to be more comfortable. • Talk about feelings and concerns with your spouse or significant other. You may

need to explore other ways to express love and closeness. If you (or your partner) are concerned, seek professional help to address the issue. Psychiatrists, counselors, clergy members or sex therapists can help you learn strategies to deal with sexual issues that may accompany your treatment.

Anemia When you have a shortage of red blood cells (called “anemia”) in your body, it doesn’t get all of the oxygen it needs. This lack of oxygen makes your heart work harder and that can make you feel like your heart is beating very fast.You can also feel tired, dizzy, weak or out of breath.Your doctor or nurse will carefully monitor your red blood cell count throughout your treatment. If your count falls too low, you may need a blood transfusion or your doctor may prescribe medication to speed red blood cell growth in your own blood.

• Get plenty of rest and limit activities. A few short naps during the day may help as well as sleeping at least eight hours at night. • If you’re tired, accept help when offered. Friends and family will likely be glad to help with errands, food preparation and child care when you’re feeling very tired.

• Choose a well-balanced diet of calories and protein to maintain your health and weight level. Talk to your doctor, nurse or a dietitian about finding the best combination of foods for you. • Take time to stand, carefully. If you’re lying down, sit up for a few minutes before standing.

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Helpful Advice • Note the type and frequency

of bowel movements you’re experiencing so you can make your doctor or nurse aware of changes. • If you’re constipated, high-

fiber foods can help or you can try warm or hot fluids such as coffee or tea. Let your doctor know if you do not experience a bowel movement in a few days. • If you’re experiencing diarrhea,

try low-fiber foods such as white toast, white rice and bananas, and aim to drink at least 64 ounces of fluid (water, flat ginger ale, clear broth, etc.) daily. If diarrhea lasts more than 24 hours, contact your doctor or nurse. You may need medication or IV fluids if you’re dehydrated. • Do not use any treatments or over-the-counter medications

without first consulting your doctor or nurse.

Bowel Issues One side effect you may experience is constipation, which may be caused by chemotherapy, limited movement or a diet low in fiber. Stools can be hard or uncomfortable to pass, or you may have excess gas or bowel cramps. Water and juices often help as does being more active. If you do not experience a bowel movement for a few days, let your doctor or nurse know. Use of narcotic pain medications can cause constipation. The doctor may choose to order a stool softener to be taken daily to prevent constipation. You may also experience the opposite problem: diarrhea. Soft, loose watery stools can be caused by chemotherapy, changes in bowel production or drugs used to treat constipation. Try eating smaller meals more frequently and drinking water to replenish your body. If you have pain and cramping with diarrhea or if diarrhea lasts 24 hours or longer, let your doctor or nurse know.

Nausea and Vomiting These common side effects often appear during treatment. The body releases a natural chemical in response to chemotherapy. The chemical can make you feel queasy. The feeling can happen on the day of treatment, shortly after or even days later. Sometimes nausea with meals can be relieved if you take anti-nausea medication 30 minutes prior to meals.

Tell your doctor or nurse if vomiting has lasted for more than one day or if it happens right after you drink. Talk to your doctor about medications that may be able to control or prevent persistent nausea or vomiting.

• Try eating bland, easy-to-digest foods, and adjust when and how much you eat.

Strong-smelling foods and drinks may trigger nausea in some people.You may want to avoid overly sweet, fatty or fried foods until you’re feeling better. • Small bites of popsicles or ice chips can help you stay hydrated if you’re vomiting.

Clear fluids are good during the day, but you may not want them right before or with a meal. • Try to figure out the best eating schedule for you. You may need a light snack

before treatment or find it’s better for you to get treatment on an empty stomach.

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Pain Some patients require long-term or shortterm pain management from their doctor or a pain management specialist. Medications can be prescribed for pain flare-ups or as a preventive measure. It will take time for your body to adjust to a plan and for your doctor to find the best medications in the right balance with the fewest side effects. Pain relief medications are available in patches, lozenges and oral forms. Patients who take pain medications as prescribed should not become addicted.

Helpful Advice • If you’re experiencing pain, talk about it. Tell your doctor,

Skin and Fingernails Other places in the body with fast-growing cells are the skin and nails.Your nails may turn yellow or appear cracked and brittle. If they loosen and fall off, new nails will grow in their place. Skin problems such as dryness, peeling or rashes are usually minor but can be painful.Your veins may appear darker during treatment and you may have more skin sensitivity to the sun even if your skin is dark. Major skin problems should be treated quickly to prevent longterm damage. Radiation recall is a specific problem where the radiation treatment area on the skin turns red. It can be light to bright red or blister and peel. • Washing with mild soap or dusting affected areas with cornstarch can help tame itchy or dry skin. Avoid using products such as aftershaves or perfumes if they contain alcohol. Colloidal oatmeal baths can help ease all-over itching. • Use nail-strengthening products to improve fingernails health. Protect them by using gloves if you work in the garden or wash dishes. If your cuticles are painful or red, tell your doctor or nurse. • If you’re experiencing sun sensitivity, use sunscreen (SPF 15 or higher). Try to avoid being in the sun when it’s at its strongest: 10:00 a.m.– 4:00 p.m. Avoid the use of tanning beds.

• Keeping your face clean and dry can help control acne flare-ups. If you experience troublesome acne, talk to your doctor or nurse about medications that can help clear it up. • For radiation recall, place a cool, wet cloth on the area for relief. Protect the area where your skin received radiation, too. Avoid direct sunlight and tanning beds, which can burn tender skin.

nurse or pharmacist about any pain you’re having and give them very specific information. Where is it? What does it feel like? How strong is it? Does anything make it feel better (or worse)? Tell your family or friends, too. They may be looking for ways to help you. Or,simply share the information to help explain why you may be acting or feeling differently. • If you have trouble reaching the desired level of pain control, don’t give up. If

you are concerned about addiction, talk to your doctor or nurse. • It’s important to let your doctor know if your pain changes at any time during treatment.

Pain medications may need adjusting in response to changes in pain levels or locations, which can vary during treatment. • If you’re taking pain medication, do not skip doses of your medication. Stay on

your prescribed schedule for the most beneficial relief. • If pain control cannot be achieved, you may need to meet with a pain or palliative care specialist.

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Helpful Advice • Wash your hands with soap and water frequently. You may

want to carry hand sanitizer in case you find yourself without access to soap and water. Times to wash your hands include before cooking or eating, or after using the restroom. Also wash hands after coughing on them, using them to wipe or blow your nose or sneezing around or into them. • Use sanitizer wipes to clean public items you use (ATM machines, grocery carts, etc.).

Limit contact with people who are sick and try to avoid spending time in large groups of people if you can. • Be careful with food; wash any fruits and vegetables before eating them. Make sure food

is prepared to and remains at the proper temperature. Avoid undercooked meats and foods. • Take care not to cut or nick your skin. You may want to switch

Infection Sometimes your body may have trouble producing the white blood cells it needs to ward off infection. One type of cell — called a “neutrophil” — can cause neutropenia if it’s in short supply. It’s very important to watch for signs of infection. Always call your doctor or nurse immediately if a fever goes higher than 100.5°F (degrees Fahrenheit).Your doctor or nurse will carefully monitor your white blood cell count throughout your treatment. If your count becomes too low, you may need medication to boost your white blood cell count.

It’s important to remember that different treatments — and different doses of treatments — can cause different side effects.You may experience very few side effects or many. If you have questions, problems or concerns, always talk to your doctor or nurse. They can help you prevent or cope with troublesome side effects to keep your treatment moving ahead as smoothly and safely as possible.

to an electric shaver and take extra care when using sharp objects such as scissors and knives. If you cut yourself, use soap, water and an antiseptic to keep the area clean until a protective scab forms. • Pay extra attention to your mouth and skin, watching for sores or signs of infection.

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NUTRITION Cancer and its treatments can significantly impact your nutritional well-being. Proper nutrition is vital because nutritional needs change during and after cancer treatment. A healthy, nutritional diet plays a vital role in treatment. There are some key components of your daily diet that need extra attention. As always, if you have questions about diet or nutrition, ask your doctor or nurse. Please refer to the Resources section to find out more about the Clinical Nutrition Services at Lexington Medical Center.

Hydration Fluid is vital to your body. As your body releases liquid, you must replace it. It’s a delicate balance that can be upset quickly, especially if you have a fever or you’re suffering from vomiting or diarrhea. You may not feel like eating or drinking but you must. Good hydration can ward off treatment side effects such as constipation and fatigue. It also helps the kidneys flush waste, chemicals and other compounds through the body quickly. You can drink water or some sports drinks and broths to restore fluid levels. If your immune system or immunity is low, be mindful of the source of your drinking water. Tap water is fine as long as it comes from a city water system or municipal well that serves a large population. If your water source is different than either of these sources, drink distilled or bottled water. You can also boil your water to purify it.

Your body sends many signals when it’s dehydrated. They include: • Small amount of urine or urine that’s dark colored • Fatigue • Eyes seem sunken

Weight Changes It’s not unusual for a cancer diagnosis to cause a great deal of anxiety. That feeling alone can lead to weight loss or gain. In addition, some treatment drugs have side effects of fluid retention and increases in appetite. Or you may feel so fatigued you don’t get enough physical activity. There are many reasons your weight may change in the coming weeks and months.

Diet is a key factor in your treatment and has a role in your general well-being, too. Eating healthy — and in a healthier manner — can help you feel better both during and after treatment.

• Skin stays raised if pinched

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Best Food Choices and Serving Sizes During Treatment Dairy Fruits

Vegetables

Grains

Protein

ChooseMyPlate.gov

Build your meals to look like this. You need protein from meats, fish, poultry, beans, nuts, dairy products and soy to: • help repair body tissues and maintain a healthy immune system. • help you maintain lean muscle mass. You usually need additional protein, especially following surgery, chemotherapy and radiation therapy. You need carbohydrates and fats from fruits, vegetables, grains, pasta, cereals, beans, oils and nuts to: • help supply your body with the bulk of calories it needs for energy and healing.

Use the following information to help make the best selections in appropriate portions to nourish your body during and after cancer treatment.

Fish, Poultry, Eggs, Lean Beef and Pork These are all sources of B-vitamins, iron, zinc and protein to help repair body tissues and build your immune system. Oily fish is the richest source of omega-3 fatty acids, which are beneficial in managing coronary artery disease and fighting inflammation. Aim for 2-3 servings per day. One serving equals: 3 oz cooked poultry, fish, lean beef, pork or 1 egg BesT ChoICes: • Chicken, turkey, Cornish hen, duck • Baked, broiled or grilled fish such as Atlantic salmon*, Atlantic herring*, whitefish*, tuna*, Atlantic mackerel*, rainbow trout*, bluefish*, sardines*, cod, perch, walleye, tilapia, shellfish, etc. *Fish that provide heart-healthy omega-3 fatty acids. • Eggs, egg substitutes, or egg whites • Beef and pork: all cuts – round, loin and sirloin are lean; ground beef, ground pork, ham, veal • Venison: steaks, chops and ground lamb

IDEAS: • Aim to have meat, fish, poultry or an egg at each meal. • Try protein powders if the taste of meat is not appealing. Stir into soups, mashed potatoes, hot cereals or milkshakes. • Have meal replacement shakes or bars available to eat if you don’t feel like cooking. • Have meat or another protein source with snacks. Try chicken salad and whole-grain crackers, or a hardboiled or scrambled egg wrapped in a wheat tortilla. • Other good sources of protein are dairy products, beans and soy products.

• help you avoid unintended weight loss. You need vitamins & minerals from all food groups to: • help ensure proper growth and development. • allow your body to use the energy in foods. • help fight inflammation and infection. © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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Legumes, oats & other Whole Grains

Vegetables

Legumes (i.e., dried beans, peas and lentils) are excellent sources of both fiber and non-meat protein. Oats are another excellent fiber source. These and other whole grains supply B-vitamins and iron.

Vegetables are good fiber sources and are naturally low in fat. They provide vitamins A and C and the minerals folate, iron, potassium and magnesium. Aim for more than 5 servings daily. One serving equals: • 1 cup raw, leafy vegetables • ½ cup chopped, raw or cooked vegetables • 1 small potato • ½ cup vegetable juice/tomato juice

Aim for 4–8 servings daily. One serving equals: • ½ cup cooked beans, peas or lentils • 2 T hummus • ¼ cup oat bran • 1 oz (½–1¼ cup) whole grain ready-to-eat cereal • ½ cup cooked whole-wheat or soy-enriched pasta, brown rice, barley, quinoa, couscous or bulgar (cracked wheat) • 1 slice whole-grain bread • 1 oz (½) whole-grain bagel • 1 (7–8") whole wheat or corn tortilla BesT ChoICes: • Dried/canned beans, peas and lentils • Oat bran, rolled and steel-cut oats • Whole-grain cereals with at least 3 grams of fiber per serving • Whole-wheat and soy-enriched pastas • Brown and wild rice, barley, quinoa, couscous, millet and bulgur (cracked wheat) • Whole-wheat, rye and oat: bread, bagels, buns, tortillas and crackers • 1 serving (check food label) whole-grain crackers • Popcorn IDEAS: • Aim for 1 cup of oats and/or legumes per day. • Rinse canned beans to reduce the sodium. • Add dry oat bran or rolled oats to ready-to-eat cereal. • Modify recipes by replacing half the white flour with wholegrain flour. • Increase variety of grains by replacing rice/pasta with cracked wheat, barley, millet, quinoa or couscous. • If you are not feeling well or are nauseated, try eating dry cereal or crackers. • If you are experiencing constipation, add bran cereals, dense wholewheat bread and beans to increase fiber. Drink more fluids when you add these foods.

BesT ChoICes: • All fresh, frozen or canned vegetables IDEAS: • Start adding vegetables earlier in the day to increase servings; for example: low-sodium V8® juice as a morning or afternoon snack. • Get acquainted with the produce section of your grocery store and incorporate vegetables that you don’t usually use. • Think color! A variety of color equals a variety of nutrients. • Choose low-sodium tomato products. • Make your own fresh salsa. • Stir onion, pepper strips and mushrooms in with eggs to make vegetable omelets. • Visit your local farmers market in season. • If you are not eating well, add butter, margarine or gravy to vegetables and potatoes to increase calories. • Use dark-green lettuce instead of iceberg for more fiber and vitamins. • Eat vegetable soup. • Try a stir-fry with broccoli, pea pods or asparagus. • Have lettuce and tomato slices on sandwiches. • Have carrot sticks and celery on hand. Top with peanut butter.

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Fruit

Soy

Fruit is an excellent source of vitamins and minerals, and low in fat (except for the very nutritious avocado), low in sodium and provides vitamins A and C, potassium and fiber. Aim for 2–4 servings daily. One serving equals: • 1 medium fruit • ½ cup fruit juice • ½ cup chopped, cooked or canned fruit • ¼ cup dried fruit • 2 T avocado

There are many health benefits to adding soy to your diet. Soy, a plant product, contains no cholesterol. It is very low in saturated fat and is an excellent source of protein. Soy also provides fiber, calcium, iron, zinc, thiamine, folate and vitamin B6. Breast cancer patients should consult their physician prior to eating soy or soy-based products. Aim for 2–3 servings daily. One serving equals:

BesT ChoICes: • All fresh fruit • Canned or frozen fruit packed in its own juice • 100% fruit juice IDEAS: • Think color! A variety of color equals a variety of nutrients. • Use avocado as a sandwich spread in place of mayonnaise, butter or margarine. • Add avocado cubes to a tossed salad. • Pack fresh berries for a snack. • Blend frozen fruit and milk for a frosty smoothie. • If you are not eating well and need more calories, eat dried fruit or fruit packed in heavy syrup.

• 1 cup soymilk, vanilla fortified • ¼ cup soy nuts • ½ cup soybeans (canned/cooked) • ½ cup edamame (young, green soybean)

• 1 soy burger • 1 cup soy pasta (cooked/macaroni) • 3 oz, about 1" slice, tofu, firm • 6 oz soy yogurt

BesT ChoICes: • Canned soybeans, edamame, tofu, unsalted soy nuts, plain or vanilla fortified soymilk and soy creamer IDEAS: • For people with diabetes, limit high-carbohydrate soy products such as flavored soy yogurt, chocolate soymilk, soy ice cream and soy energy bars. • Add canned soybeans to chili, soups, salads and casseroles. • Edamame plus a fruit or vegetable makes a great snack. It can also be easily added to a tossed salad. • Purée 4 oz soft tofu with 15 oz low-fat or fat-free dill, ranch or French dip. • Make a smoothie using 4 oz soft tofu, ¼–½ cup vanilla soymilk and fresh or frozen fruit of your choice. • Use ½ cup soft tofu and ½ cup fat-free cottage/ricotta cheese when making vegetarian or meat lasagna. • Mix unsalted soy nuts with a variety of other unsalted nuts. Have ¼–¹∕3 cup with a fruit or a vegetable for a healthy snack. • Add unsalted soy nuts to cereal and yogurt for some added crunch and to increase protein.

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Dairy

Nuts, Seeds, Oils and Other Fats

These foods are good sources of calcium and other vitamins and minerals. Calcium is one of the minerals necessary for good blood pressure control and maintaining strong bones and teeth. Aim for 3–4 servings and/or a calcium supplement with vitamin D. One serving equals: • 1 cup milk (300mg)* • ½ cup cottage cheese (35mg)* • 6 oz yogurt (235mg)* • ½ cup low-nonfat ice cream or nonfat frozen yogurt (100mg)* • 1 oz cheese * (varies 100–200mg)* amount of calcium per serving

Nuts, seeds, oils, and fats are calorie boosters. They provide monounsaturated fats, polyunsaturated fats and omega-3 fatty acids. Nuts provide protein, fiber, vitamin E and the minerals phosphorus, zinc, magnesium and selenium. Flax seed provides omega-3 fatty acids and fiber. Nuts, seeds, oils and fats are higher in calories so eat them when you need calories but are struggling to eat large portions of food. Aim for less than or equal to 1 serving with each meal. One serving equals: • 2 T natural peanut butter • ¼ cup (1 oz) nuts • 2 T ground flax seed • 1 T oil

BesT ChoICes: • Fat-free or reduced fat half & half (e.g., Land O’Lakes® or Kemps®) • Low-fat and nonfat yogurt, sour cream and cream cheese. • Lowfat ice cream or frozen yogurt

• Cheese (e.g., cheddar, Swiss, American, Monterey Jack, Brie, Mozzarella, string cheese, farmer’s, Alpine Lace®), cottage cheese, ricotta and feta cheese (choose low-fat cheese most of the time) • Skim (fat-free) and 1% milk

IDEAS: • To increase calories, use half & half in your coffee or tea and when making cream soups and sauces. • Use 1% milk when making pudding, hot chocolate and baked products. • Sprinkle fresh grated cheese to top salads or pasta dishes. • For people with diabetes, the portion size for ice cream, frozen yogurt and pudding is ½ cup. • To increase your calcium and protein intake, try to have a glass of milk with each meal instead of coffee or soda. • Pack yogurt or string cheese in your lunch or have as a snack. • If you have lactose intolerance, try skim, % Lactaid® milk or similar products. • If you cannot consume adequate calcium to meet nutritional needs, consider taking a calcium supplement. If you are not taking a multivitamin, choose a calcium supplement with vitamin D. Look for the active ingredient “calcium carbonate” or “calcium citrate”. Choose a 500–600mg supplement and take one with meals 2 to 3 times per day.

BesT ChoICes: • Nuts and nut butters (i.e., peanut butter) • Ground flax seed, also referred to as flax meal • Canola, olive and peanut oils • Salad dressings using any of the above oils or any low-fat dressing • Reduced-fat mayonnaise/Miracle Whip® • Margarine/spread, butter or sour cream AVOID • Trans fat. It contributes to coronary artery disease. Choose products with 0 trans fat on the food label. IDEAS: • Make trail mix using a variety of nuts with Quaker Oat Squares® or Shredded Wheat’n Bran cereal. • To extend the shelf life of nuts, store in the freezer. • Flax seed can be found in the produce section or health food aisle of most grocery stores. If already ground, it may be called flax meal. • In order to grind flax seed, use a coffee grinder. Both store-bought flax meal as well as home-ground should be kept in a dark container and refrigerated. • Add 1 to 2 T of ground flax seed to cereal or yogurt. • Dip bread in olive oil or top with margarine or butter to increase calories. • Add sour cream and margarine or butter to potatoes to increase calories.

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Lexington Medical Center Registered Dietitians write a weekly blog discussing a wide variety of nutrition topics for the whole family and, through LMC’s Speaker’s Bureau, are available to speak to community groups. To schedule an outpatient appointment, ask your physician for a referral. If you have questions, call 803-936-4132 to speak to a dietitian.

CLINICAL NUTRITION SERVICES The Clinical Nutrition Services at Lexington Medical Center are an important part of your health care team and can help. If you are an inpatient, the Registered Dietitian is available to you and will follow you throughout your stay. To work with the Registered Dietitian while receiving outpatient treatment, please discuss your concerns with your physician and request a referral. Whether you are admitted to the hospital or are undergoing outpatient treatment, the Registered Dietitians will provide you with expertise in food and nutrition, individualizing medical nutrition therapy with the goal of supporting your quality of life and improving your health during cancer treatment and recovery. The Registered Dietitians will: • Assess your current height, weight and body mass index. • Determine the calories, protein, fluid and micronutrients you require. • Evaluate your diet history and advise you on what to eat and drink to meet your needs. • Help you find strategies to manage treatment side effects such as taste changes, weight loss or gain, difficulty chewing and swallowing, nausea and vomiting, poor appetite, diarrhea and constipation, and immune suppression (neutropenic diet). • Provide nutrition education to assist you with managing other health conditions (i.e., diabetes) while undergoing cancer treatment and recovery. • If you choose a tube feeding or parenteral nutrition, assess if you are meeting your nutritional needs, and advise you and your physician if changes are required. © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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A New Normal

SURVIVORSHIP

EMBRACING


SURVIVORSHIP Table of Contents Embracing a New Normal ....................................

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2

Exercise and Recovery .......................

Tobacco Cessation ............................................ Post-treatment Effects....................

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After the celebrations end, you’re ready to get back to “real” life again. But life after treatment may seem very different than you remember. You may still have pain or fatigue. You may be worried, feel a little lost or anxious that your cancer will return.

Dealing with the emotions and physical changes of cancer is complicated, difficult and takes effort. If you are struggling with any part of your feelings or experiencing side effects, don’t keep it to yourself. Talk to your health care team and your partner. Not only do they want to help, they can help.

EMBRACING A NEW NORMAL The first response to hearing a cancer diagnosis is usually shock and disbelief, followed by anxiety with symptoms of depression. You will adjust as you learn more about your options and your treatment plan begins to form. During this time, it is not uncommon to experience insomnia, oversleeping, weight loss due to loss of appetite. For your own sake, do not deny or ignore your feelings, but share them with those who can help you work through them or use them to address and deal with upcoming challenges.

Transition There’s no standard on or off date for the period that comes after treatment, called “transition.” Generally, researchers peg transition as the one to two years following treatment. Yours can and probably will vary. Your support system, type and level of intensity of your treatment, and other physical and emotional factors can shorten or lengthen your time of transition. This new reality comes with many dramatic shifts as you adjust to a life forever changed. Typically, the longer your experience, from diagnosis to final treatment, the longer your transition will be. For many, the first six months tend to be the most difficult but that time frame may be longer or shorter. Your long-term prognosis or any follow-up surgeries or treatments may also complicate matters. On a brighter note, many survivors have made the choice to embrace the new normal for its potential. They took a fresh look at their lives, then made adjustments. They directed their energy toward the opportunity of finding and having a more enjoyable and more fulfilling life. © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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Physical Changes and Intimacy Going through cancer treatment may change how you look and feel. Often shortand long-term physical effects further complicate the emotional implications. Pain, fatigue and fluctuations in weight are very common transition experiences. People may notice your scars, ostomies and skin changes, which may make you feel angry or serve as a painful reminder of your cancer journey. You may be afraid of having an ostomy mishap in front of others. Such feelings are right and very natural.

Coping with Body Changes If you have to adjust to body changes, it’s no simple matter. You are right to grieve your losses. These are not easy feelings to just brush past. Mourn your loss, then try to view the changes through a different lens. How has this loss made you stronger and wiser? It may help to take the reins and make your own changes. If your skin looks or feels different, find new ways to care for it. New clothes or a different haircut may provide a little pick-me-up. Taking control of the change yourself may make you feel better and remind you of your worth.

Intimacy and Sex Drive If you find yourself feeling badly about your body image, your sex drive or interest in intimacy may decrease. Some patients find that treatment is the root of long- or short-term side effects affecting intimacy and sexual desire. This is a difficult reality — one that few cancer survivors feel prepared to face. Know that you are not alone. This is an issue over which many survivors struggle. Millions of people who experience chemotherapy, surgery or radiation find themselves in a new world. Coupled with the emotional aspects of treatment, it’s a worrisome, stressful problem for one person — or a couple — to work through.

With so many surviving cancer, patients often report problems, including: • Worrying about sexual performance or a lack of interest; • Losing the ability to perform as they did before cancer; • Undergoing the changes of menopause; • Losing fertility or the ability to have a child. These common feelings and concerns may affect you or they may not. It’s important, however, to acknowledge these feelings and address how they impact your life, spirit and time with your partner or spouse. Your doctor may also be able to help remedy some common medical problems and conditions. PROBLEM

THERAPY OPTIONS

Erection issues

Medication, devices, counseling or other approaches

Vaginal dryness

Lubricants, dilators, hormone medication or creams

Muscle weakness

Kegel exercises and strengthening exercises

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Take Action Some problems may be a simple fix. Others cannot be repaired or will take time to overcome. If you are married, your spouse may be afraid to bring up topics for fear of hurting your feelings. If you don’t know how to talk about these issues, this guide can help you start the conversation.

Get help from your doctor or health care team.

Dating and Social Activities Changes can be just as profound and even more difficult without the support of a spouse. You may worry that an ostomy will keep someone from wanting to get close to you. Bringing up subjects such as infertility or sexual problems may seem too scary. You may wonder how and when to share your cancer diagnosis, if you share it at all. Remember that dating can be difficult under any circumstances. If you experience rejection, it isn’t failure. It’s part of the process whether you have cancer or not. Getting back to an active social life isn’t easy either, but these ideas can help you work through complicated feelings and situations. • If you’re ready for activity, take a class or join a club. Focusing on something you enjoy can help you feel more comfortable and more confident. • Don’t let cancer be an excuse for not dating or meeting people. • When you feel trust or a deep friendship with a date or acquaintance, you may be ready to share your experience.

There’s no easy cure or treatment for other realities. Losing the ability to have children is complicated for both men and women. Often the emotional and physical stress of a cancer diagnosis and treatment will strain the strongest relationship. If this is the case, seek assistance from a counselor. You may need to speak to someone alone or with your partner. A sex therapist is a professional who is trained in sexual problems and therapy. He or she can help you address your concerns and develop new coping or adjustment strategies for you and your partner.

Talk to your partner. Being together for a long time may not be enough to help you get through the emotional and physical trauma of treatment. Staying connected may prove difficult even in a stable, long-term relationship. Thankfully, divorce is one side effect of treatment that’s very rare. For people in a committed relationship, the scars and ostomies that can come with cancer treatment are often nothing more than a bump in the road. What may loom large in both partners’ minds is starting the conversation. Talking about your needs can be difficult, but when the needs are sexual, it’s even harder. Bringing up the subject is important and easy. It may be as simple as saying:

“This isn’t easy to talk about, but we’ve only made love a few times recently. I miss that closeness. I am worried that part of the problem is my scars. Are they bothering you or is it something else?” Here are a few things to think about before starting such an important conversation. 1. Avoid blame and stay positive and open-minded. 2. Don’t think about responses, but rather focus on your partner’s thoughts and feelings. 3. Ask questions so you truly understand what they are saying. 4. After gaining a complete understanding, be sure your partner knows that his or her feelings are very important to you. © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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The Future After your period of adjustment passes, you begin to move ahead. Some days may carry heavier burdens than others — especially the anniversary dates of pivotal times in your treatment journey. Your days forward may be complicated by other factors such as age, family or employment issues. Or some issues may simply be beyond your control. After such a serious health issue, you may find you second-guess everything about a cold, cough or ache. The new roles family members now play may be hard to understand or adapt to, or be habits that are difficult to break. Other family members may have a hard time letting go of their need to always help. A spouse may have taken on a changed role in the home for some time while their partner faced cancer. So many things may be different that it’s easy to feel lost. Take care not to isolate yourself. Share your experiences and struggles with trusted friends or loved ones, support groups or a counselor. There’s a new level of support for cancer survivors that can greatly benefit during the years of transition and entry into your post-cancer life. Give yourself time to adjust, knowing there will be glorious days and trying days. Some survivors are liberated by cancer. They look for new meaning and confront new challenges. They vow to live every day with everything they have. That can mean hiking the Blue Ridge Mountains or simply volunteering in their community. There is no right or wrong way to live. Simply be true to yourself.

What’s Next? In the late 1990s, researchers and practitioners began to see there was a gap in meeting survivors’ health care needs. Soon after, survivorship officially became a phase of cancer care. Since then, survivorship care has become a critical aspect of oncology. With millions of Americans being diagnosed with cancer and others returning back to their lives after treatment, survivorship is an important part of the journey. There are now established post-treatment recommendations, new clinical guidelines, screenings and assessments for modern-day survivors and survival. More and more oncologists are in closer touch with patients’ primary care providers before and after treatment. As in your treatment, you are key to your survival success. You may want to develop your own survivorship plan to help guide and provide structure to your coming years. Life after treatment will still be normal — just a new, different kind of normal. Embrace strategies and support systems that will make your coming days as comfortable and fulfilling as they can be. This new normal is what you worked for. Enjoy it!

Finding Hope • Hope is a way of thinking, feeling and acting that may help you through difficult situations. • There are many different ways to find hope. Each person will find different things to hope for or thoughts that give them hope.

What am I looking forward to? What activities or thoughts give me hope?

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Even if you’re not ready for daily exercise, simply moving toward an active lifestyle is a step in the right direction. Start reaping the benefits of healthy activity and exercise as soon as you can. • Talk to your health care team about an exercise program that is right for you. • Choose activities you enjoy. • Start slowly and build up to an activity level that you and your health care team agree on. • Exercise at a time of day when you feel your best. • Start with a warm-up exercise such as stretching for two or three minutes. • Consider exercises that can help you build lean muscles such as lifting weights. • If you are feeling fatigue from chemotherapy, try aerobic exercises to increase your energy level. • End each exercise session with cool-down activities such as stretches or a slow walk.

EXERCISE AND RECOVERY Exercise provides helpful health benefits during and after treatment. It can boost energy levels, help maintain a healthy weight and stave off side effects such as fatigue. Some of the greatest benefits are its ability to ease anxiety, improve mood and bolster self-esteem. After you complete your treatment, regular exercise will be a very important part of your recovery. Some studies suggest exercise helps reduce the risk of a cancer recurrence and can prolong the lives of some cancer survivors.

Getting Started Before starting an exercise program, talk to your doctor or nurse about benefits and risks. Don’t overexert yourself or try to do too much too soon. The level of exercise your body can tolerate depends on a combination of factors. Your diagnosis, treatment, treatment history and overall health help determine how much you can exercise. You can seek help from a couple of types of exercise specialists. The American College of Sports Medicine and the American Cancer Society have created a specialty cancer certification for exercise professionals.

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Your Exercise Program The American Cancer Society recommends at least 30 minutes of moderate to vigorous physical activity at least five days per week. With steady exercise or activity, you help reduce your risk for cancer, cardiovascular disease and diabetes. A moderate exercise plan may include walking, bicycling, swimming, yoga or stretching. As you exercise, stop and rest if you feel dizzy, pain or shortness of breath. If you do feel any effects, be sure to share them with your health care team.

Keeping Yourself Healthy

Exercise Precautions Some survivors may experience lingering side effects from treatment. In some cases, ongoing problems do affect the style and duration of exercise. You may even need to avoid certain environments altogether.

• Drink plenty of water.

Anemia

Neuropathy

If you have severe anemia, it’s best to delay an exercise program until your anemia improves.

If you are experiencing arm and leg nerve problems or balance issues, you may have problems exercising. If balance is problematic or you lack limb strength, consider stable exercise options such as stationary recumbent cycling.

• Sleep at least eight hours every night.

Bladder Catheters If you have an indwelling (bladder) catheter, you can lower your risk of infection by avoiding water or other microbial exposures. You should also avoid resistance training in the area to prevent dislodgement of your catheter.

Compromised Immune System Public gyms and other crowded locations can be dangerous for anyone with a low white blood cell count. Avoid exposure until your white blood cell count improves. If you receive a stem cell transplant, you should avoid crowded places for one year. Talk to your physician about exercises that you can do on your own.

Severe Fatigue If you’re not ready for exercise, you can stretch. Ten minutes of daily stretching exercises can help you boost your energy levels and get you started on the path toward daily exercise.

• As you feel able, begin a regular exercise program.

• If you smoke, talk to your health care team about quitting. • Make sure you keep all of your appointments and have regular checkups after you finish treatment. • Maintain a healthy weight. • Follow your health care professional’s directions for taking your medication. • Find time to relax. • Build strong relationships with others to help you stay emotionally and mentally healthy.

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WEST COLUMBIA 3239 Sunset Boulevard West Columbia Our West Columbia Wellness Center is a state-of-the-art facility staffed with a certified and diversified team to help you meet your health and fitness goals. We offer a variety of fitness classes throughout the day. As a member, you may attend all classes at both facilities. ——————————— IRMO 1674-E Lake Murray Boulevard, Columbia Offering classes for more than 25 years, our Irmo Wellness Center is a “classbased” facility with a variety of fitness classes offered throughout the day.

HEALTH DIRECTIONS As a Medical Wellness Center, our goal is to improve the quality of life of our members and community. The staff at Health Directions is certified in exercise science, personal training, group fitness and health promotion, and provides a personal, custom approach to fitness and exercise. Amenities Include • Group fitness, yoga/ Pilates, cycle and personal training studios • Treadmills, rowers, ellipticals, bikes and NuSteps® • Strength training equipment • Nutritional counseling • Wellness speakers • Lockers, restrooms with showers ——————————

Classes Include

• Cardio • Strength training • Cycle • Yoga and Pilates • TRX® suspension training • Zumba, kettlebells and more

For more information, please call (803) 791-2113 or visit lmcHealthDirections.com. © 2013 Lexington County Health Services District, Inc. (Rev. 9/2013)

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WELLNESS WORKOUTS Lexington Medical Center’s Cancer Exercise Program Led by Thad Werts, ACSM CET, ACSM HFS Cancer Exercise Trainer (CET), certified by the American College of Sports Medicine This exercise program is designed for anyone who has been diagnosed or treated for cancer and released by the doctor for exercise therapy. The goal is to support your recovery by emphasizing the importance of exercise and how to integrate it into your health care program. Each member of the group receives instruction in the areas of cardiovascular endurance, strength training, balance, flexibility and functional movement. Wellness Workouts maximizes the benefits of your training within the parameters of your limitations.

For additional information about Wellness Workouts, call (803) 936-7125 or visit www.lexmed.com.

Participating in the program includes: • Initial assessment and individualized packet including medical history review, goals and exercise prescription • Eight small group training sessions that meet twice a week for four weeks • Two one-on-one counseling sessions to evaluate your progress

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Reasons to Quit Regardless of age, smokers can substantially reduce their risk of disease, including cancer, by quitting. If you already have cancer, your risks are even greater: • Smoking reduces the body’s ability to heal and respond to therapy; • Smoking increases the risk of pneumonia and respiratory failure; • Smokers have a higher risk of their cancer returning or developing a second cancer.

S.C. DHEC: Healthy Living & Prevention S.C. Tobacco Quitline 1-800-Quit-Now 1-800-784-8669

TOBACCO CESSATION Every day tobacco kills an estimated 1,200* people in the United States and 14,000** worldwide. Tobacco use is the single most preventable cause of death and illness in the United States On average, smokers die 13 to 14 years earlier than nonsmokers*. Tobacco use harms nearly every organ in the body. Tobacco smoke contains chemicals that are harmful to both smokers and nonsmokers. Breathing even a little tobacco smoke can be harmful. Of the more than 7,000 chemicals in tobacco smoke, at least 250 are known to be harmful, including hydrogen cyanide, carbon monoxide and ammonia. And among these known harmful chemicals in tobacco smoke, at least 69*** can cause cancer. In addition to cancer, smoking has been linked to heart disease, stroke, lung disease, emphysema, stomach ulcers and early menopause. It also causes wrinkles, teeth discoloration and bad breath. Smokeless tobacco has many of the same harmful chemicals, including nicotine, that are found in cigarette smoke. The chance of oral cancers and other mouth disease, including tooth loss, goes up with the use of chewing tobacco. If the reasons listed on the right are not enough to quit, not only does smoking rob you of your own health, it also harms the health of those whom you smoke around. If you use tobacco, one of the best things you can do for your health is to stop. No matter how long you’ve been using tobacco, or the amount you use a day, quitting will greatly improve your health and decrease your risk of cancer, heart disease and lung disease. In addition to improving your physical health, when you stop using tobacco you will have more energy, a better sense of smell and taste, healthier-looking skin and more money in your pocket! Centers for Disease Control World Health Organization *** National Cancer Institute *

**

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When You’re Feeling Down • Stand up and stretch, go for a short walk or move your hands and flex your muscles. • Talking to others can help you feel more connected.

POST-TREATMENT EFFECTS After your cancer treatment ends, you may have lasting effects or develop new problems. As more people survive cancer, new risks and problems are arising, some long after treatment ends. Today’s patients are monitored very closely after treatment and often receive a care plan for ongoing guidance. And, as treatments continue to progress and evolve, there’s more and more research centered on survival.

Long-term Effects If a health problem develops during treatment and continues after treatment ends, it’s called a long-term effect. These effects can last months or years after treatment. A late effect is a problem or condition that develops long after treatment ends. While there’s no way to reliably predict long-term or late effects, research shows many survivors experience them. Some survivors develop a chronic health condition while others may struggle with multiple problems. The risk for posttherapy effects varies based on many factors, including the treatment received. Tracking long-term effects in adults is a complicated matter. With aging, adults often develop medical problems. It’s difficult to know if a health problem was a result of cancer treatment or just a natural part of the aging process. With so many unknowns, there is a good deal of research being done on cancer survivors’ physical and psychological health after cancer treatment. Researchers do know secondary cancers tend to appear within certain timeframes. Some leukemia treatments can cause secondary cancers in the blood. If that occurs, it’s usually within several years of the end of treatment. A tumor from radiation treatment may appear 10 years (or longer) after therapy ends. If a secondary cancer appears, it’s not a recurrence of the primary cancer. The risk of developing secondary cancer is affected by many factors.

• Completing a task that has been on your to-do list for a while will boost your energy and help you feel productive. • Clearing the space around you may make you feel calmer and more refreshed. • Think of something you would enjoy such as reading a new book, seeing a friend or visiting a new area. • Doing something nice for someone else will help you feel better, too.

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Eating healthy Cancer treatments may cause patients to feel less interested in eating because of: • Changes in appetite; • Differences in sense of taste/smell; • Stress; • Feeling sick or nauseous. Talk to your health care team or a dietitian about foods and drinks that help patients stay healthy during treatment. • Eat plenty of calories and proteins when you feel able to eat. • Keep prepared meals in the house so that there is food available when you are hungry. • Drink plenty of liquids. • Don’t worry if you do not feel like eating on some days.

Common Effects of Cancer Therapy While we can’t pinpoint how many people have long-term and late effects, we do know there are common problems that often arise after treatment.

Bone loss can cause bone pain, breaks or fractures. If bones or bone tissue begin to break down, nutritional supplements, exercise and bisphosphonate medications can help stem further bone loss. Fatigue leaves some survivors with little energy, even after a good night’s sleep. Exercise and stimulant medications can help those with fatigue. Medicines or blood transfusions used to treat anemia can also help. Lymphedema is chronic painful swelling in certain areas of the body that is usually a result of lymph node removal or damage. Manually draining the built-up fluid provides relief and compression around the area and can help reduce swelling. It’s common in survivors who either had lymph nodes removed or damaged by treatment. While lymphedema can be treated and managed, there is no cure. Neuropathy is felt as a tingling or burning pain in the hands and feet. Prescription drugs — anticonvulsants or antidepressants — can help survivors cope with the effects of neuropathy. Some prefer non-drug therapies such as acupuncture. Pain often appears as a burning, aching or stabbing feeling. A variety of opioids can be used to provide relief. Some survivors also explore relaxation, hypnosis or acupuncture to cope with ongoing pain. Sexual dysfunction effects range from a flagging libido to erectile dysfunction or uncomfortable vaginal dryness. A number of medications can help relieve these effects, as can over-the-counter lubricants and moisturizers.

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Care and Support

CAREGIVING

PATIENT


CAREGIVING Table of Contents Cancer Patient Caregiving ..................................

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What Does a Caregiver Do? ..............

Being a Caregiver ..............................................

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Tasks Caregivers Perform: Housekeeping — cooking, cleaning and grocery shopping, as well as shopping and taking care of your own family. Overseeing financial matters — helping with medical insurance issues and other financial matters the patient cannot handle. Taking physical care of the patient — bathing, feeding, giving medication, providing transportation. You will develop close relationships with the medical care team, so don’t hesitate to questions when necessary. Offering companionship — being a good listener and encouraging the patient to focus on one day at a time to help them accept the fact that life will never again be the same. This will help manage anger, loneliness and fear.

CANCER PATIENT CAREGIVING Whether you are a new or experienced caregiver, take comfort in the fact that you are not alone in your struggle. We are here to help you care for the patient as well as help you take care of yourself. Feel free to ask questions when necessary.

Who is a Caregiver? A caregiver is anyone who must take care of someone with cancer — a spouse, sibling, relative, maybe even a friend or neighbor. Caregivers are not usually paid for their services, since they are most often a family member or relative.

Why is a Caregiver Needed? In recent years, medical technology has made many advances, causing an increase in medical insurance costs. Statistics show that 80% of treatment is now done in the home or at an outpatient clinic, so family members are often needed as caregivers.

Sometimes it will be hard to sacrifice your personal feelings and needs for the patient, but a positive influence can help the patient win the battle over cancer.

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WHAT DOES A CAREGIVER DO? You have many different responsibilities, and they change with the needs of your loved one. You are involved in all areas of this person’s life as well as care for your own family, so you’re very busy. It’s good to be organized, make lists, prepare for the unexpected and manage your time well.

Solve Problems Work together to solve issues when possible; for example, if the patient suddenly develops a high fever and must be hospitalized, you will be alarmed, but remaining calm and reassuring helps the situation tremendously. Being organized and preparing for such emergencies is important and will spare you and the patient stress and pressure. Reassure the patient that everything is under control and that you can handle anything that comes up.

The patient will have questions and needs, and you will want to be prepared by doing the following: • Inform family and all medical personnel of the patient’s hospitalization. • Pack clean clothes, toilet articles, reading material and all medications. • Complete all necessary medical and insurance forms for admission. • Complete patient’s release forms and arrange for treatment at home, such as instructions on new medications and IVs at the outpatient clinic.

Involve the Patient It is important for the patient to take an active role in their recovery process. When possible, let them do as much as possible to avoid any feelings of being a burden to you.

You can help their recovery process in several ways: • Let the patient cancel those activities they can no longer continue. Offer to help in this process only if you are asked. • Be available to listen when the patient needs to share personal feelings with you. Doing this will also help the patient see you as a friend. • Resist the temptation to take over or help when you see the patient struggling to complete an activity, such as making a sandwich. • You and the patient may communicate differently. The patient may be a good writer and prefer writing out their feelings instead of talking. They may have a warm, friendly personality, so a hug or the touch of your hand is good. If the patient seems to want time alone, respect that wish also.

Communicate with the patient and their medical team If the patient seems withdrawn, maybe it is because of something you are doing, but they wants to spare your feelings. Try talking about it and coming up with a solution that works for both of you. Using good judgment and keeping things normal are critical to the patient’s recovery; you will be the two decision-makers regarding physical activities, when to talk or not to talk, and the need for privacy. You will also communicate with the patient’s medical care team, getting to know them and what they do. You will learn to give medications, watching closely for possible side effects, and work with the doctor and medical team in making treatment decisions. You know the patient’s needs and situation, and therefore have the right and responsibility to speak up and ask questions on behalf of the patient as necessary.

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Don’t let yourself feel guilty about taking care of your own health. Plan things that you enjoy, such as: • taking time out to meet friends for lunch or dinner and a movie; • finishing a project you started before the patient became ill; • staying in touch with people who are good listeners. Sharing your most private feelings with a trusted friend helps tremendously; • doing whatever helps you relax and forget the cares of the day. Remember, only you can control your situation and set the necessary boundaries so that caregiving does not affect your health.

BEING A CAREGIVER No two people are identical, so no two caregivers react or handle caregiving the same way. You may see it as a way to return a kindness you have received from the patient. Maybe you wanted to become a nurse, but were unable to do so. If so, caregiving can fulfill that need and bring purpose to your life. You will grow, learn and mature in your experience as you discover abilities and talents that you have never used, and your life will be more complete as you add another experience to it. If you are an encourager, caring for a cancer patient provides many opportunities to develop that part of your personality. You will also meet people who will become your friends for life through your mutual experiences. This is a strong foundation for these relationships that will forever change your life. Caregiving is never easy, but if you have a gift for encouragement and helping others, you will find great satisfaction and pride in caregiving for a loved one.

What if I don’t want to be a caregiver? Many times, caregiving is forced on you at an inconvenient time. It is normal to feel resentful, confused and trapped, especially if there are others who can do it. You need to express your feelings to avoid ill will later on, because the situation may get worse as time passes, and you cannot afford the stress. Don’t allow yourself to feel guilty about the resentment. Resist the guilt and accept your feelings. You alone know your limits, so don’t be shy about asking for help. Asking for an alternate caregiver to assist you is one solution. If this is not possible, try to arrange for the patient to be cared for elsewhere. If these suggestions don’t work, speak with your health care team to find help through counseling and other sources.

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What about my needs and feelings? Having met with family members, doctors and the patient’s medical care team, the routine work of taking care of the patient and your own family begins. In addition to caregiving, there are possible legal issues, medical bills and insurance matters to handle. The routine duties of caring for your own family and the patient, especially if you are still working, are exhausting and demanding. If you are in the workforce, you may be close to full retirement but can’t afford to leave early. To keep your full retirement, taking some unpaid time away from work under the Family and Medical Leave Act (FMLA) may work for you and be preferable to early retirement. Discuss this with your Human Resources department and your immediate supervisor to learn how it works. If your company has an Employee Assistance Program (EAP), their trained counselors will help you cope with stress and depression, and make the best decision for your situation. Your medical care team can also provide you with resources to help you cope. They can see your situation more objectively than you and help you see the value of support, so take advantage of their services. In time, you may find that the patient’s needs have taken the place of yours. The challenges of caregiving can cause anger, resentment, depression and stress, especially if you don’t get quality rest and sleep, and do not have help. You must take care of yourself, too. If you don’t, you may develop serious health problems. If this happens, you may no longer be able to care for the patient. You know yourself better than anyone else, so let it be known that you cannot continue taking care of the patient alone.

When others want to help The task of caregiving, as well as your other responsibilities, takes up all of your time. Family members may want to help but don’t know how to go about it. That’s why family meetings are good and why it’s important to meet at the beginning. When they help, they will see how demanding it is, be more sensitive to your needs and offer their help more often, so get them involved.

Be prepared when help is offered • Make a list of everything others can do to help lighten your load. • Be specific in assigning duties so there is no confusion about the task. • Record the person’s name by each task and check it off your list. • Involve the patient so he/she feels useful and a part of the process. Don’t forget that there are many online sources to assist you in the role of caregiving. These resources offer different kinds of help, and all of them can help you take better care of yourself and the patient. Above all, don’t make the mistake of thinking you can do it all yourself. Reach out to others!

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Consider joining a support group for caregivers or using counseling services. It is natural to feel that you are the only one with such heavy burdens, and you need all the support you can get. Joining a local support group in your community helps prevent these feelings of isolation and loneliness. One of the benefits of a group such as this is listening to others’ stories, knowing that there are other caregivers dealing with similar stressful and frustrating situations. There are also many online support groups and cancer organizations; they can help by sharing their stories, offering advice and encouragement so you don’t feel so all alone.

What if I fail? When treating someone who has cancer, circumstances often necessitate changes to the patient’s care plan. For instance, the patient may wish to receive their care at home, which may not be the best solution. Financial demands may require you to return to work in order to meet long-term needs. Changes in health or family dynamics could involve a new care plan to ensure the best outcomes for the entire family. In some instances, the cancer may not respond to treatment and, as a result, the patient would need a new plan that focuses on managing symptoms and side effects, and no longer includes aggressive therapy. Every patient’s plan of care is different and specific to their circumstances. Changes in the health status of a loved one does not mean that you have failed to do your best. Try to take comfort in knowing that everything possible has been done to care for your loved one.

National Organizations and Websites for Caregivers National Alliance for Caregiving (NAC) www.caregiving.org Family Caregiver Alliance (FCA)/National Center on Caregiving 1-800-445-8106 www.caregiver.org National Family Caregivers Association (NFCA) 1-800-896-3650 www.thefamilycaregiver.org

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INFORMATION

RESOURCES

Additional


RES O U R C E S Table of Contents The Language of Cancer ....................................... Commonly Asked Questions ......................

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Cancer-related Websites ...................................... Patient’s Rights and Responsibilities ...........

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Lexington Medical Center Foundation .................... Patient Initiatives and Classes .....................

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Living Will Sample .......................................... South Carolina Power of Attorney Sample .....

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THE LANGUAGE OF CANCER With a cancer diagnosis, it’s almost as though you are learning a new language. Understanding words and medical terms can help you be more comfortable with processes and procedures. You may hear the following terms during your treatment. If you come across an unfamiliar term or phrase, ask for a definition so that you can be comfortable with the word and its meaning, and how it applies to you.

A

Acupuncture (AK-yoo-PUNK-cher) inserting thin needles in the skin at certain body points to control symptoms including nausea and vomiting Adjuvant chemotherapy (AD-joo-vant kee-mohTHER-uh-pee) a treatment to destroy cancer cells that remain after surgery or radiation therapy Alopecia (al-uh-PEE-shee-uh) when you lose hair from usually hairy areas of your body; a possible side effect of chemotherapy Anemia (uh-NEE-mee-uh) a problem in your blood, caused by having fewer red blood cells than a normal level Antiemetic (an-tee-uh-MET-ik) a drug that can prevent or control nausea and vomiting

B

Benign (bih-NAHYN) non-cancerous, not usually lifethreatening Biological therapy (by-oh-LAH-jih-kul THER-uhpee)treatment to help restore or stimulate the body’s immune system that can also reduce side effects Biopsy (BAHY-op-see) the removal of cells or tissues for examination by a pathologist Blood cell count/complete blood count (CBC) a sample of blood broken down into the number of red blood cells, white blood cells and platelets Blood vessel a tube (artery, capillary, vein, etc.) through which blood circulates in the body Bone marrow soft, spongy tissue in the center of most bones that produces white blood cells, red blood cells and platelets © 2013 Lexington County Health Services District, Inc. (Rev. 6/2013)

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C

Cancer clinical trials research studies that test new medical approaches for screening, prevention, diagnosis or treatment Carcinomas (kahr-suh-NOH-muhs) the most common type of cancer, these tumors are made by cells that cover external and internal body surfaces. The most frequent cancers of this type in the U.S. are lung, breast, colon and prostate. Catheter (KATH-i-ter) a flexible tube that helps fluids enter or leave the body Chemotherapy (kee-moh-THER-uh-pee) a drug treatment that kills cancer cells

H

Healthy cells cells that function the way they should Hormone (HAWR-mohn) a chemical made by glands in the body that circulate in the bloodstream and control the actions of certain cells or organs Hospice a Medicare benefit for patients who need comfort care

I

Impotence (IM-puh-tuhns) not able to have or maintain an erection Incontinence (in-KON-tn-uhnts) loss of ability to control urine flow

Comfort Care methods to improve care for those near death to include pain and symptom management as well as emotional and spiritual supports

Infertility (in-FUR-tl-i-tee) not having the ability to become pregnant or to cause a pregnancy

Constipation (kon-stuh-PEY-shuhn) reduced bowel activity, or hard or difficult-to-pass stools

Injection/shot pushing fluids or drugs into the body using a syringe and needle

D

Inpatient a patient receiving treatment who spends at least one night in the facility where it is performed

Diarrhea (dahy-uh-REE-uh) multiple liquid or loose urgent bowel movements

Intra-arterial (IN-truh-ar-TEER-ee-ul) “IA” or inside an artery

Dry heaves the body’s attempt to vomit with nothing in the stomach

Intraperitoneal (IN-truh-PAYR-ih-toh-NEE-ul) “IP” or inside the body cavity

F

Intravenous/IV (in-truh-VEE-nuhs) within a blood vessel

Fatigue (fuh-TEEG) extreme tiredness or lack of energy

L

Leukemias (loo-KEE-mee-uhs) cancers of the immature blood cells that grow in the bone marrow and tend to accumulate in large numbers in the bloodstream Long-term side effects problems that are expected to continue for a long time Lymph gland/lymph node (limf-GLAND/limf-NOHD) a rounded mass of lymphatic tissue surrounded by a capsule of connective tissue. Lymph nodes filter lymph (lymphatic fluid) and store lymphocytes (white blood cells). They are located along lymphatic vessels. Lymphomas (lim-FOH-muhs) cancers that are found in the lymph nodes and tissues of the body’s immune system © 2013 Lexington County Health Services District, Inc. (Rev. 6/2013)

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M

Malignant (muh-LIG-nuhnt) cancerous cells that can invade and destroy nearby tissue, and spread (metastasize) to other parts of the body Metastatic (MET-uh-STAT-ik) when a cancer has spread from the primary site to another part of the body

N

Nausea (NAW-zee-uh) having an upset stomach or queasiness that can lead to vomiting Neo-adjuvant (NEE-o-AD-joo-vant) chemotherapy using chemotherapy to reduce a tumor’s size before treatments such as surgery or radiation Neutropenia (noo-truh-PEE-nee-uh) an unusual drop in neutrophil count, the measure of a specific white blood cell Neutrophil (NOO-truh-fil) a specific kind of white blood cell

O

Oncologist (ong-KOL-uh-jist) a doctor who is a medical specialist in the branch of medicine that deals with tumors or cancer

P

Palliative care (PAL-ee-ey-tiv) prevents or treats the symptoms of a disease, side effects caused by treatment of a disease and psychological, social and spiritual problems related to a disease or its treatment, to improve a patient’s quality of life (also called comfort care, supportive care and symptom management) Pathologist (puh-THOL-uh-jist) a doctor who identifies diseases by studying cells and tissues under a microscope, specializing in identifying abnormal cells Peritoneal (per-i-tn-EE-al) cavity the area within the abdomen that holds intestines, stomach, liver, ovaries and other organs Platelet a type of blood cell that helps prevent bleeding by causing blood clots to form Port an implanted device through which blood may be drawn and drugs may be given without repeated needle sticks Primary site where a cancer starts; usually the site that identifies the type of cancer Pump a device used to deliver a precise amount of a drug at a specific rate

Outpatient a patient who is treated at a health care facility but does not spend the night there © 2013 Lexington County Health Services District, Inc. (Rev. 6/2013)

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R

Radiation (rey-dee-EY-shuhn) energy released in the form of particle or electromagnetic waves from common sources of radiation such as medical X-rays or energy from a radioisotope Radiation therapy uses high-energy radiation to kill cancer cells and shrink tumors Radioisotope (rey-dee-oh-AHY-suh-tohp) an unstable form of a chemical element that releases radiation as it breaks down and becomes more stable Radiologist (rey-dee-OL-uh-jist) a doctor who specializes in creating and interpreting pictures of areas inside the body. These pictures might be produced by a radioactive substance, X-ray, sound wave or other type of energy. Recurrent cancer that returns after a period of time Red blood cells (RBC) cells that carry oxygen to all parts of the body Remission a decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer may still be in the body.

S

T

Thrombocytopenia (THROM-boh-sy-toh-PEE-nee-uh) loss of blood platelets that control bruising and blood loss from a wound or other membranes and tissues Tumor (TOO-mer) created by cells massing together. There are two types of tumors: solid and liquid. Solid tumors, which form a mass, are named for the type of cells that form them: sarcomas, carcinomas and lymphomas. Liquid tumors are known as “leukemias.” Tumor marker a substance found in tumor tissue or released from a tumor into the blood or other body fluids. A high level of a tumor marker may mean that a certain type of cancer is in the body. An example of a tumor marker would be PSA, which, if elevated, suggests that further tests for prostate cancer should be done.

V

Vomiting forceful expulsion of stomach contents

W

White blood cells (WBC)/lymphocytes (LIM-fuh-sahyts) cells that help the body fight infection and other diseases

Sarcomas (sahr-KOH-muhs) cancers that are created from cells found in the supporting tissues of the body such as bone, cartilage, fat, connective tissue and muscle Screening checking for disease when there are no symptoms. Since screening may find diseases at an early stage, there may be a better chance of curing the disease. For example: mammogram (breast); colonoscopy (colon); Pap smear (cervix); PSA blood level and digital rectal exam (prostate). Screening can also include checking for a person’s risk of developing an inherited disease by doing a genetic test. Side effect when treatment affects or causes a reaction in healthy tissues or organs Stage the extent of a cancer in the body. Staging is usually based on the size of the tumor, whether lymph nodes contain cancer and if the cancer has spread from the original site to other parts of the body. Standard treatment common or normal treatments that are widely accepted by experts © 2013 Lexington County Health Services District, Inc. (Rev. 6/2013)

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What do I do if I cannot afford my medications? LMC has social workers and discharge planners to assist with medication programs. Contact (803) 939-8774 for information. What is a nurse navigator? They are registered nurses who help Lexington Medical Center cancer patients and their families through diagnosis, treatment and recovery by providing information, emotional support and identifying resources in the community. This service is available at no cost. Patients may be referred by their physician or a nurse, or self-refer by calling (803) 791-2521 or (803) 791-2289. How do I find out about disability and if I can continue working? Ask your doctor. Lexington Medical Center also has financial counselors who can assist you. Please call (803) 936-5813 with questions. What do I take for nausea? a. Take what your doctor has prescribed for you. Follow the directions on the label. b. If you are nauseated and didn’t receive a prescription for home use, call your nurse. c. Make sure you have plenty of nausea medicine on hand prior to each chemotherapy treatment.

This information should help answer some of your questions. Please read carefully.

COMMONLY ASKED QUESTIONS If you have any other questions or problems, please speak with your nurse. Do I continue to see my primary doctor while being treated for cancer? Ask your oncologist. What do I need to bring to doctor’s appointments or procedures and treatments? Bring your notebook and an updated list of medications and allergies. Write your questions in your notebook to help you remember them. Do I need to bring my treatment book to each visit? Yes. Please keep your patient schedule and all pertinent information in your treatment book and bring it to every visit. Your nurse may need to update information in your book. Also keep your book by the phone and take it with you if you are spending the night away from home. Is there any assistance with transportation? Options for assistance depend on medical needs and insurance. Talk to your nurse navigator or social worker. What can I take for pain if my pain medication is not working? Inform your doctor or nurse. Your doctor may need to change your prescription or prescribe an additional pain reliever for you.

If I develop a cold, what medicine can I take? Call your doctor before taking any over-the-counter medication. What do I need to know about having my prescriptions filled? a. Call your pharmacy first. If there are no refills available, your pharmacy will contact your physician for a refill authorization. b. Don’t wait until your medicine is gone before calling for a refill. Plan ahead and call at least one week before your medicine runs out. c. Please bring all of your medicines with you (bottles) to each doctor visit so that your nurse may update your medication list in your chart. What is a clinical trial? Clinical trials are not considered a last treatment option and can be considered at the beginning of treatment. Ask your doctor, nurse practitioner or nurse navigator about clinical trial availability and being a candidate for one. How do I learn about community services? Ask your social worker or nurse navigator.

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CANCER-RELATED WEBSITES It is important to remember that there is a lot of information and misinformation on the Web. In general, people may put whatever views, opinions and recommendations they like on subjects such as the significance of symptoms, types of treatments, side effects of treatments and alternative treatments and products, but there are no medical experts sifting through websites and posts on forums, assessing what is and isn’t reliable information. Your health care team can also verify or determine whether information should be considered in your situation. We recommend the following sites for reliable, accurate information, but you should speak to any members of your health care team for immediate responses to your questions and concerns.

The American Cancer Society (www.cancer.org) has a link to help you determine if information you find on the Web is trustworthy.

General Cancer Information Cancer Education

www.cancereducation.com

Oncology Channel

www.oncologychannel.com

General Information American Cancer Society (Columbia location)

www.cancer.org

(803) 750-1693

American Society of Clinical Oncology

www.cancer.net

(571) 483-1780

Clinical Trial Listing (U.S. National Institutes of Health)

www.clinicaltrials.gov

Duke Cancer Institute

www.cancer.duke.edu

1-888-275-3853

LMC Community Health Information Library

www.lexmed.com

(803) 791-2426

National Cancer Institute (NCI)

www.cancer.gov

1-800-422-6237

National Coalition for Cancer Survivorship

www.canceradvocacy.org

1-877-622-7937

National Comprehensive Cancer Network

www.nccn.org

1-215-690-0300

Coping American Cancer Society Cancer Survivors Network

www.csn.cancer.org

CancerCare

www.cancercare.org

1-800-813-4673

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Legal / Insurance U.S. Department of Labor Office of Disability Employment Policy

www.dol.gov/odep/

1-866-487-2365

www.scvrd.net/offices/lexington_richland.php S.C. Vocational Rehabilitation Department

Lexington County

1-866-206-5184

Richland County

1-866-206-5280

S.C. Human Affairs Commission

www.state.sc.us/schac

(803) 737-7800

S.C. Department of Insurance

www.doi.sc.gov

(803) 737-6160

U.S. Social Security Administration

www.ssa.gov

1-800-772-1213

U.S. Department of Labor Employee Benefits Security Administration

www.dol.gov/ebsa

1-866-444-3272

S.C. Health Insurance Pool

www.doi.sc.gov

1-800-868-2500

U.S. Pre-existing Condition Insurance Plan

www.pcip.gov

1-866-717-5826

U.S. Medicare

www.medicare.gov

1-800-633-4227

Bladder Bladder Cancer WebCafé

www.blcwebcafe.org

Breast Breast Cancer Information

www.breastcancer.org

Young Survival Coalition

www.youngsurvival.org

Susan G. Komen for the Cure

www.komen.org

1-877-465-6636

www.carcinoid.org

1-888-722-3132

www.nccc-online.org

1-800-685-5531

Colon Cancer Alliance

www.ccalliance.org

(202) 628-0123

Colorectal-Cancer Net

www.colorectal-cancer.net

Carcinoid The Carcinoid Cancer Foundation

Cervical National Cervical Cancer Coalition

Colorectal

Head and Neck www.spohnc.org

1-800-377-0928

National Institute of Diabetes and Digestive and Kidney Diseases

www.niddk.nih.gov

(301) 496-3583

National Kidney Foundation

www.kidney.org

1-800-622-9010

Support for People with Oral and Head and Neck Cancer

Kidney

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Liver LiverTumor.org

www.livertumor.org

Lung American Lung Association

www.lungusa.org

(202) 785-3355

LungCancer.org

www.lungcancer.org

1-800-813-4673

www.lymphomainfo.net

1-877-399-6937

International Myeloma Foundation

www.myeloma.org

1-800-452-2873

Multiple Myeloma Research Foundation

www.multiplemyeloma.org

Lymphoma Lymphoma News, Support and Information

Myeloma

Ovarian National Ovarian Cancer Coalition

www.ovarian.org

1-888-682-7426

Ovarian Cancer National Alliance

www.ovariancancer.org

(202) 331-1332

S.C. Ovarian Cancer Foundation Riverbanks Chapter

ovariancancermidlands.org

(803) 926-3462

Pancreatic Cancer Action Network

www.pancan.org

1-877-272-6226

Pancreatica

www.pancreatica.org

(831) 658-0600

National Alliance of Prostate Cancer Coalitions

www.naspcc.org

1-877-627-7228

Phoenix 5

www.phoenix5.org

Pancreatic

Prostate

Quitting Tobacco Centers for Disease Control & Prevention, How to Quit S.C. Tobacco Quitline / Quit for Keeps Tobacco Free.org

www.cdc.gov/tobacco www.scdhec.gov www.tobaccofree.org

1-800-232-4636 1-800-784-8669 (310) 577-9828

American Academy of Dermatology

www.aad.org

(866) 503-7546

Melanoma Research Foundation

www.melanoma.org

1-800-673-1290

Skin

Testicular The Testicular Cancer Resource Center

www.tcrc.acor.org

Thyroid Thyroid Cancer Survivors’ Association

www.thyca.org

1-877-588-7904

www.wcn.org

1-800-444-4441

Women’s Cancers Foundation for Women’s Cancer © 2013 Lexington County Health Services District, Inc. (Rev. 6/2013)

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PATIENT’S RIGHTS AND RESPONSIBILITIES We consider you a partner in your hospital care. When you are well-informed, participate in treatment decisions and communicate openly with your doctor and other health professionals, you help make your care as effective as possible. Lexington Medical Center encourages respect for the personal preferences and values of each individual. As a patient, you have many rights that we are committed to protecting and promoting. Whenever possible, we will inform you of your rights before furnishing or discontinuing your care. These rights apply to your representative in the event you are unable to exercise them.

For Cancer Patients

For Family Members

• I have the right to be told the truth about my disease.

• I have the right to enjoy my own good health without feeling guilty. It is not my fault that someone I love has cancer.

• I have the right to feel bad if I receive bad news. • I have the right to talk to my doctor and my family about cancer. And I have the right to privacy in refusing to talk with others about it if that is my choice. • I have the right to be treated as a person and not merely as a “patient” while I am sick. The fact that I am sick does not give others the right to make decisions for me. • I have the right to ask others for help in the things I cannot do for myself, within reason. • I always have the right to hope for a full cure, a longer life or a happier life here and now. • I have the right and it is okay to be angry with people I love. My anger does not mean I have stopped loving them. • I have the right to cope with cancer in my own way, and my family has the right to cope with it in theirs. Our ways may be different, but that is okay. • I have the right to be free of pain if that is my choice.

• I have the right to choose with whom I will talk to about cancer. If I hurt others’ feelings because they are asking too many questions, it is not my fault. • I have the right to know what is going on in our family, even if I am a child. I have the right to be told the truth about the cancer in words that I can understand. • I have the right to disagree with the patient even if he or she has cancer. I can feel angry with someone and not always feel guilty, because sickness does not stop someone from being a real person. • I have the right to feel what I feel now, not what someone else says I “should” feel. • I have the right to look after my own needs, even if they do not seem as great as the patient’s. I am permitted to take “time out” from dealing with the cancer without feeling disloyal. • I have the right to get outside help for the patient if I cannot manage all the responsibilities of home care myself. • I have the right to get help for myself, even if others in the family choose not to get help. © 2013 Lexington County Health Services District, Inc. (Rev. 6/2013)

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LEXINGTON MEDICAL CENTER FOUNDATION The Lexington Medical Center Foundation was founded in 1990 to develop resources for providing quality health services that meet the needs of the many patients served by Lexington Medical Center.

Today, through the generous donations received from individuals and corporations, the Foundation continues to touch the lives of those throughout the Midlands each day.

Cancer Care Fund The Foundation supports many areas of cancer care at LMC, including the purchase of vital medications and supplies for patients in need as well as assistance with utilities and other living expenses. This fund also provides items for the hospital’s Infusion Center to make treatment more comfortable for cancer patients.

Crystal Smith Fund The Crystal Smith Fund provides breast cancer patients with essential items and services, including necessary supplies and medication during treatment, and wigs and prostheses. The Foundation ensures that women have what they need, regardless of their ability to pay, and provides post-surgical kits for every mastectomy patient at Lexington Medical Center.

Mobile Mammography Unit The state-of-the-art Mobile Mammography Unit screens more than 2,500 women each year. Made possible by an inaugural gift of more than $100,000 from the Foundation, the Mobile Mammography Unit enables women to receive the high-quality mammography services available at Lexington Medical Center at even more convenient times and locations. The Foundation continues to support this vital program, which saves the lives of women in our community. Š 2013 Lexington County Health Services District, Inc. (Rev. 6/2013)

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Relaxing Rhythms Relaxing Rhythms provides soothing and relaxing music for inpatients. Available on Tuesdays from 10:00 a.m. to 12:00 noon, patients may request a visit from a music practitioner and determine the duration of each visit. For more information or to request a Relaxing Rhythms music session, please call Volunteer Services at (803) 791-2573.

Palliative Care Palliative Care is a patient- and family-centered care approach that focuses on the physical, emotional and spiritual needs of patients with serious illnesses. Treatment plans emphasize comfort and quality of life. For more information call (803) 791-2687.

PATIENT INITIATIVES & CLASSES Healing IconsÂŽ This program demonstrates the importance and value visual arts have in healing. Through participatory workshops, retreats, seminars and lectures, patients create a visual reminder of their journey and develop new coping strategies. Please call Lexington Oncology Associates at (803) 794-7511 for information.

Look Good... Feel Better Presented in collaboration with the American Cancer Society, the National Toiletry and Fragrance Association, and the National Cosmetology Association. Offered six times a year, this class helps women deal with the cosmetic effects of cancer treatment. Participants receive a gift box of make-up appropriate for their skin tone. For more information, contact Kelly Jeffcoat at (803) 791-2521.

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LIVING WILL DECLARATION OF A DESIRE FOR A NATURAL DEATH STATE OF SOUTH CAROLINA

COUNTY OF

I,_________________________________________ ( _______ - _____ - ________ ), Declarant, being at least 18 years Social Security Number

of age and a resident of and domiciled in the City of _______________________, County of ______________________, State of South Carolina, make this Declaration this _______ day of _____________________, 20_____ . I willfully and voluntarily make known my desire that no life-sustaining procedures be used to prolong my dying if my condition is terminal or if I am in a state of permanent unconsciousness, and I declare: If at any time I have a condition certified to be a terminal condition by two physicians who have personally examined me, one of whom is my attending physician, and the physicians have determined that my death could occur within a reasonably short period of time without the use of life-sustaining procedures or if the physicians certify that I am in a state of permanent unconsciousness and where the application of life-sustaining procedures would serve only to prolong the dying process, I direct that the procedures be withheld or withdrawn, and that I be permitted to die naturally with only the administration of medication or the performance of any medical procedure necessary to provide me with comfort care.

INSTRUCTIONS CONCERNING ARTIFICIAL NUTRITION AND HYDRATION INITIAL ONE OF THE FOLLOWING STATEMENTS If my condition is TERMINAL and could result in death within a reasonably short time, ____ I direct that nutrition and hydration BE PROVIDED through any medically indicated means, including medically or surgically implanted tubes. OR ____ I direct that nutrition and hydration NOT BE PROVIDED through any medically indicated means, including medically or surgically implanted tubes. INITIAL ONE OF THE FOLLOWING STATEMENTS If I am in a PERSISTENT VEGETATIVE STATE or other condition of permanent unconsciousness, ____ I direct that nutrition and hydration BE PROVIDED through any medically indicated means, including medically or surgically implanted tubes. OR ____ I direct that nutrition and hydration NOT BE PROVIDED through any medically indicated means, including medically or surgically implanted tubes. In the absence of my ability to give directions regarding the use of life-sustaining procedures, it is my intention that this Declaration be honored by my family and physicians and any health facility in which I may be a patient as the final expression of my legal right to refuse medical or surgical treatment, and I accept the consequences from the refusal. I am aware that this Declaration authorizes a physician to withhold or withdraw life-sustaining procedures. I am emotionally and mentally competent to make this Declaration. Page 1 of 3

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LIVING WILL APPOINTMENT OF AN AGENT (OPTIONAL) 1. You may give another person authority to REVOKE this declaration on your behalf. If you wish to do so, please enter that person’s name in the space below. Name of Agent with Power to Revoke:___________________________________________________________________ Address:__________________________________________________________________________________________ Telephone Number:_________________________________________________________________________________ 2. You may give another person authority to ENFORCE this declaration on your behalf. If you wish to do so, please enter that person’s name in the space below. Name of Agent with Power to Enforce:___________________________________________________________________ Address:__________________________________________________________________________________________ Telephone Number:__________________________________________________________________________________

REVOCATION PROCEDURES THIS DECLARATION MAY BE REVOKED BY ANY ONE OF THE FOLLOWING METHODS; HOWEVER, A REVOCATION IS NOT EFFECTIVE UNTIL IT IS COMMUNICATED TO THE ATTENDING PHYSICIAN: (1) BY BEING DEFACED, TORN, OBLITERATED, OR OTHERWISE DESTROYED, IN EXPRESSION OF YOUR INTENT TO REVOKE, BY YOU OR BY SOME PERSON IN YOUR PRESENCE AND BY YOUR DIRECTION. REVOCATION BY DESTRUCTION OF ONE OR MORE OF MULTIPLE ORIGINAL DECLARATIONS REVOKES ALL OF THE ORIGINAL DECLARATIONS; (2) BY A WRITTEN REVOCATION SIGNED AND DATED BY YOU EXPRESSING YOUR INTENT TO REVOKE; (3) BY YOUR ORAL EXPRESSION OF YOUR INTENT TO REVOKE THE DECLARATION. AN ORAL REVOCATION TO THE ATTENDING PHYSICIAN BY A PERSON OTHER THAN YOU IS EFFECTIVE ONLY IF: (A) THE PERSON WAS PRESENT WHEN THE ORAL REVOCATION WAS MADE; (B) THE REVOCATION WAS COMMUNICATED TO THE PHYSICIAN WITHIN A REASONABLE TIME; (C) YOUR PHYSICAL OR MENTAL CONDITION MAKES IT IMPOSSIBLE FOR THE PHYSICIAN TO CONFIRM THROUGH SUBSEQUENT CONVERSATION WITH YOU THAT THE REVOCATION HAS OCCURRED. TO BE EFFECTIVE AS A REVOCATION, THE ORAL EXPRESSION CLEARLY MUST INDICATE YOUR DESIRE THAT THE DECLARATION NOT BE GIVEN EFFECT OR THAT LIFE-SUSTAINING PROCEDURES BE ADMINISTERED; (4) IF YOU, IN THE SPACE ABOVE, HAVE AUTHORIZED AN AGENT TO REVOKE THE DECLARATION, THE AGENT MAY REVOKE ORALLY OR BY A WRITTEN, SIGNED AND DATED INSTRUMENT. AN AGENT MAY REVOKE ONLY IF YOU ARE INCOMPETENT TO DO SO. AN AGENT MAY REVOKE THE DECLARATION PERMANENTLY OR TEMPORARILY; (5) BY YOUR EXECUTING ANOTHER DECLARATION AT A LATER TIME. ______________________________________________________ Signature of Declarant Page 2 of 3 © 2013 Lexington County Health Services District, Inc. (Rev. 6/2013)

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LIVING WILL AFFIDAVIT STATE OF ________________________________ COUNTY OF _______________________________________________ We, ____________________________ and ___________________________, the undersigned witnesses to the foregoing Declaration, dated this __________ day of____________________________, 20________, at least one of us being first duly sworn, declare to the undersigned authority, on the basis of our best information and belief, that the Declaration was on that date signed by the declarant as and for his DECLARATION OF A DESIRE FOR A NATURAL DEATH in our presence and we, at his request and in his presence, and in the presence of each other, subscribe our names as witnesses on that date. The declarant is personally known to us, and we believe him to be of sound mind. Each of us affirms that he is qualified as a witness* to this Declaration under the provisions of the South Carolina Death with Dignity Act in that he is not related to the declarant by blood, marriage, or adoption either as a spouse, lineal ancestor, descendant of the parents of the declarant, or spouse of any of them; nor directly financially responsible for the declarant’s medical care; nor entitled to any portion of the declarant’s estate upon his decease, whether under any will or as an heir by intestate succession; nor the beneficiary of a life insurance policy of the declarant; nor the declarant’s attending physician; nor an employee of the attending physician; nor a person who has a claim against the declarant’s decedent’s estate as of this time. No more than one of us is an employee of a health facility in which the declarant is a patient. If the declarant is a resident in a hospital or nursing care facility at the date of execution of this Declaration, at least one of us is an ombudsman designated by the State Ombudsman, Office of the Lieutenant Governor.

_______________________________________________

_______________________________________________

Witness

Witness*

Subscribed before me by __________________________________, the declarant, and subscribed and sworn to before me by the witness(es), ____________________________________________________________________________________ this ______ day of ___________________________, 20_____.

_______________________________________________ Signature of Notary Public

(SEAL)

Notary Public for _________________________________ My commission expires:____________________________

*If qualified as a witness, the Notary Public may serve as a witness.

SC Code of Laws Sec. 44-77-10 (Rev. 6/91) Page 3 of 3

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SOUTH CAROLINA HEALTH CARE POWER OF ATTORNEY INFORMATION ABOUT THIS DOCUMENT This is an important legal document. Before signing this document, you should know these important facts: 1. This document gives the person you name as your agent the power to make health care decisions for you if you cannot make the decision for yourself. This power includes the power to make decisions about life-sustaining treatment. Unless you state otherwise, your agent will have the same authority to make decisions about your health care as you would have. 2. This power is subject to any limitations or statements of your desires that you include in this document. You may state in this document any treatment you do not desire or treatment you want to be sure you receive. Your agent will be obligated to follow your instructions when making decisions on your behalf. You may attach additional pages if you need more space to complete the statement. 3. After you have signed this document, you have the right to make health care decisions for yourself if you are mentally competent to do so. After you have signed this document, no treatment may be given to you or stopped over your objection if you are mentally competent to make that decision. 4. You have the right to revoke this document, and terminate your agent’s authority, by informing either your agent or your health care provider. 5. If there is anything in this document that you do not understand, you should ask a social worker, lawyer or other person to explain it to you. 6. This Power of Attorney will not be valid unless two persons sign as witnesses. Each of these persons must either witness your signing of the Power of Attorney or witness your acknowledgment that the signature on the Power of Attorney is yours. The following persons may not act as witnesses: A. Your spouse, your children, grandchildren and other lineal descendants; your parents, grandparents and other lineal ancestors; your siblings and their lineal descendants; or a spouse of any of these persons. B. A person who is directly financially responsible for your medical care. C. A person who is named in your will or, if you have no will, who would inherit your property by intestate succession. D. A beneficiary of a life insurance policy on your life. E. The person named in the health care power of attorney as your agent or successor agent. F. Your physician or an employee of your physician. G. Any person who would have a claim against any portion of your estate (persons to whom you owe money). If you are a patient in a health care facility, no more than one witness may be an employee of that facility. 7. Your agent must be a person who is 18 years old or older and of sound mind. It may not be your doctor or any other health care provider who is now providing you with treatment; or an employee of your doctor or provider; or a spouse of the doctor, provider or employee; unless the person is a relative of yours. 8. You should inform the person that you want him or her to be your health care agent. You should discuss this document with your agent and your physician, and give each a signed copy. If you are in a health care facility or a nursing care facility, a copy of this document should be included in your medical record. Page 1 of 5

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SOUTH CAROLINA HEALTH CARE POWER OF ATTORNEY 1. DESIGNATION OF HEALTH CARE AGENT I, ____________________________________________________________________________, hereby appoint: (Principal) (Agent’s Name) _______________________________________________________________________ (Agent’s Address) ______________________________________________________________________ Telephone: home: _____________________ work: _____________________ mobile __________________ as my agent to make health care decisions for me as authorized in this document. Successor Agent: If an agent named by me dies, becomes legally disabled, resigns, refuses to act, becomes unavailable, or if an agent who is my spouse is divorced or separated from me, I name the following as successors to my agent, each to act alone and successively, in the order named: a. First Alternate Agent: _________________________________________________________________ Address: __________________________________________________________________________ Telephone: home: ____________________ work: ____________________ mobile: ___________________ b. Second Alternate Agent: _______________________________________________________________ Address: __________________________________________________________________________ Telephone: home:______________________ work:____________________ mobile: ___________________ Unavailability of Agent(s): If at any relevant time the agent or successor agents named here are unable or unwilling to make decisions concerning my health care, and those decisions are to be made by a guardian, by the Probate Court or by a surrogate pursuant to the Adult Health Care Consent Act, it is my intention that the guardian, Probate Court or surrogate make those decisions in accordance with my directions as stated in this document. 2. EFFECTIVE DATE AND DURABILITY By this document I intend to create a durable power of attorney effective upon, and only during, any period of mental incompetence, except as provided in Paragraph 3 below. 3. HIPAA AUTHORIZATION When considering or making health care decisions for me, all individually identifiable health information and medical records shall be released without restriction to my health care agent(s) and/or my alternate health care agent(s) named above including, but not limited to, (i) diagnostic, treatment, other health care, and related insurance and financial records and information associated with any past, present or future physical or mental health condition including, but not limited to, diagnosis or treatment of HIV/AIDS, sexually transmitted disease(s), mental illness, and/or drug or alcohol abuse and (ii) any written opinion relating to my health that such health care agent(s) and/or alternate health care agent(s) may have requested. Without limiting the generality of the foregoing, this release authority applies to all health information and medical records governed by the Health Information Portability and Accountability Act of 1996 (HIPAA), 42 USC 1320d and 45 CFR 160-164; is effective whether or not I am mentally competent; has no expiration date; and shall terminate only in the event that I revoke the authority in writing and deliver it to my health care provider. Page 2 of 5 © 2013 Lexington County Health Services District, Inc. (Rev. 6/2013)

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SOUTH CAROLINA HEALTH CARE POWER OF ATTORNEY 4. AGENT’S POWERS I grant to my agent full authority to make decisions for me regarding my health care. In exercising this authority, my agent shall follow my desires as stated in this document or otherwise expressed by me or known to my agent. In making any decision, my agent shall attempt to discuss the proposed decision with me to determine my desires if I am able tocommunicate in any way. If my agent cannot determine the choice I would want made, then my agent shall make a choice for me based upon what my agent believes to be in my best interests. My agent’s authority to interpret my desires is intended to be as broad as possible, except for any limitations I may state below. Accordingly, unless specifically limited by the provisions specified below, my agent is authorized as follows: A. To consent, refuse or withdraw consent to any and all types of medical care, treatment, surgical procedures, diagnostic procedures, medication, and the use of mechanical or other procedures that affect any bodily function, including, but not limited to, artificial respiration, nutritional support and hydration, and cardiopulmonary resuscitation; B. To authorize or refuse to authorize any medication or procedure intended to relieve pain, even though such use may lead to physical damage, addiction or hasten the moment of, but not intentionally cause, my death; C. To authorize my admission to or discharge, even against medical advice, from any hospital, nursing care facility, or similar facility or service; D. To take any other action necessary to making, documenting and assuring implementation of decisions concerning my health care, including, but not limited to, granting any waiver or release from liability required by any hospital, physician, nursing care provider or other health care provider signing any documents relating to refusals of treatment or the leaving of a facility against medical advice, and pursuing any legal action in my name, and at the expense of my estate to force compliance with my wishes as determined by my agent, or to seek actual or punitive damages for the failure to comply. E. The powers granted above do not include the following powers or are subject to the following rules or limitations: ____________________________________________________________________________________ ____________________________________________________________________________________ ____________________________________________________________________________________ 5. ORGAN DONATION (INITIAL ONLY ONE) My agent may ___; may not ___ consent to the donation of all or any of my tissue or organs for purposes of transplantation. 6. EFFECT ON DECLARATION OF A DESIRE FOR A NATURAL DEATH (LIVING WILL) I understand that if I have a valid Declaration of a Desire for a Natural Death, the instructions contained in the Declaration will be given effect in any situation to which they are applicable. My agent will have authority to make decisions concerning my health care only in situations to which the Declaration does not apply. 7. STATEMENT OF DESIRES CONCERNING LIFE-SUSTAINING TREATMENT With respect to any life-sustaining treatment, I direct the following: (INITIAL ONLY ONE OF THE FOLLOWING 3 PARAGRAPHS) (1) ____ GRANT OF DISCRETION TO AGENT. I do not want my life to be prolonged nor do I want life-sustaining treatment to be provided or continued if my agent believes the burdens of the treatment outweigh the expected benefits. I want my agent to consider the relief of suffering, my personal beliefs, the expense involved and the quality as well as the possible extension of my life in making decisions concerning life-sustaining treatment. OR Page 3 of 5 © 2013 Lexington County Health Services District, Inc. (Rev. 6/2013)

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SOUTH CAROLINA HEALTH CARE POWER OF ATTORNEY (2) ___ DIRECTIVE TO WITHHOLD OR WITHDRAW TREATMENT. I do not want my life to be prolonged and I do not want life-sustaining treatment: a. if I have a condition that is incurable or irreversible and,without the administration of life-sustaining procedures, expected to result in death within a relatively short period of time; OR b. if I am in a state of permanent unconsciousness. OR (3) ___ DIRECTIVE FOR MAXIMUM TREATMENT. I want my life to be prolonged to the greatest extent possible, within the standards of accepted medical practice, without regard to my condition, the chances I have for recovery or the cost of the procedures. 8. STATEMENT OF DESIRES REGARDING TUBE FEEDING With respect to nutrition and hydration provided by means of a nasogastric tube or tube into the stomach, intestines or veins, I wish to make clear that in situations where life-sustaining treatment is being withheld or withdrawn pursuant to Item 7 (INITIAL ONLY ONE OF THE FOLLOWING THREE PARAGRAPHS): (a) ____ GRANT OF DISCRETION TO AGENT. I do not want my life to be prolonged by tube feeding if my agent believes the burdens of tube feeding outweigh the expected benefits. I want my agent to consider the relief of suffering, my personal beliefs, the expense involved and the quality as well as the possible extension of my life in making this decision. OR (b) ____ DIRECTIVE TO WITHHOLD OR WITHDRAW TUBE FEEDING. I do not want my life prolonged by tube feeding. OR (c) ____DIRECTIVE FOR PROVISION OF TUBE FEEDING. I want tube feeding to be provided within the standards of accepted medical practice, without regard to my condition, the chances I have for recovery or the cost of the procedure, and without regard to whether other forms of life-sustaining treatment are being withheld or withdrawn. IF YOU DO NOT INITIAL ANY OF THE STATEMENTS IN ITEM 8, YOUR AGENT WILL NOT HAVE AUTHORITY TO DIRECT THAT NUTRITION AND HYDRATION NECESSARY FOR COMFORT CARE OR ALLEVIATION OF PAIN BE WITHDRAWN. 9. ADMINISTRATIVE PROVISIONS A. I revoke any prior Health Care Power of Attorney and any provisions relating to health care of any other prior power of attorney. B. This power of attorney is intended to be valid in any jurisdiction in which it is presented.

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SOUTH CAROLINA HEALTH CARE POWER OF ATTORNEY BY SIGNING HERE, I INDICATE THAT I UNDERSTAND THE CONTENTS OF THIS DOCUMENT AND THE EFFECT OF THIS GRANT OF POWERS TO MY AGENT. I sign my name to this Health Care Power of Attorney on this _____ day of _____________________, 20____. My current address is ________________________________________________________________ Principal’s Signature: ________________________________________________________________________ Print Name of Principal: ______________________________________________________________________ I declare, on the basis of information and belief, that the person who signed or acknowledged this document (the principal) is personally known to me, that he/she signed or acknowledged this Health Care Power of Attorney in my presence, and that he/she appears to be of sound mind and under no duress, fraud or undue influence. I am not related to the principal by blood, marriage or adoption, either as a spouse, a lineal ancestor, descendant of the parents of the principal or spouse of any of them. I am not directly financially responsible for the principal’s medical care. I am not entitled to any portion of the principal’s estate upon his decease, whether under any will or as an heir by intestate succession, nor am I the beneficiary of an insurance policy on the principal’s life, nor do I have a claim against the principal’s estate as of this time. I am not the principal’s attending physician nor an employee of the attending physician. No more than one witness is an employee of a health facility in which the principal is a patient. I am not appointed as Health Care Agent or Successor Health Care Agent by this document. Witness No. 1 Signature:_____________________________________________________________Date:__________________ Print Name:________________________________________________ Telephone: _______________________ Address: ____________________________________________________________________________________ ____________________________________________________________________________________ Witness No. 2 Signature:_____________________________________________________________Date:__________________ Print Name:________________________________________________ Telephone: _______________________ Address: ____________________________________________________________________________________ ____________________________________________________________________________________ (This portion of the document is optional and is not required to create a valid health care power of attorney.) STATE OF SOUTH CAROLINA COUNTY OF ___________________________________________________ The foregoing instrument was acknowledged before me by Principal on ______________________, 20 ______. Notary Public for South Carolina ________________________________________________________________ My Commission Expires:__________________________ Page 5 of 5 © 2013 Lexington County Health Services District, Inc. (Rev. 6/2013)

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