Issuu

Survivorship Resources Guide 2024

This guide is intended to provide supportive information and helpful resources to individuals with a history of cancer, at any point along the way. Although it is not an exhaustive list, we hope you find it beneficial to your treatment journey. If you don’t find what you’re searching for, please discuss your needs with you provider team. Our goal is to update this guide regularly, so if you have any suggestions please contact Amy Litterini at amy.litterini@mainehealth.org

Table of Contents Head & Neck Cancers…54 Screening Resources…4 Genetic Counseling…5 Breast & Cervical Screening…8 Lung Screening…9

Treatment Support & Health Promotion…10 Clinical Trials…11 Navigation…12 Social Work…13 Nutrition…15 Rehabilitation…17 Physical Activity…19 Addressing Fatigue…21 Smoking Cessation…23 Spritual Care…25 Interpreter Services…26 My Chart…27

Resources By Diagnosis…28 Adolescents & Young Adults…29 Bladder Cancer…40 Blood Cancers…42 Breast Cancer…44 Colorectal Cancer…50 Gynecological Cancers…52

Liver Cancer…57 Pancreatic Cancer…59 Prostate Cancer…61 Skin Cancers…64 Thoracic Cancers…68

Financial, Insurance & Work Resources…70 Financial Navigation…71 National Organizations…72

Additional Resources…73

Supportive Care Community Partners

Post-Treatment Resources…85 Network Partner Locations…90 Locations close to home…..

Screening Resources

Treatment Support & Health Promotion Resources

Clinical Trials As you consider treatment options for yourself or your loved one, you may consider participation in a clinical trial. Click here to access more information and see a list of open clinical trials locally: For Patients - MHIR (mmcri.org). For a complete list of trials open in the U.S. and abroad, visit www.clinicaltrials.gov.

MAINEHEALTH INSTITUTE FOR RESEARCH 81 Research Drive Scarborough, Maine | 04074 207.396.8100 MMCRIINFO@mainehealth.org

Patient Navigation A patient navigator is an oncology nurse or social worker who specializes in working with patients diagnosed with cancer. The navigator is here to make sure you and your family have all the information you need to make the most informed and timely decisions about your treatment plan. The service is free and provided at many MaineHealth locations.

What services does the patient navigator provide? As part of your health care team, the patient navigator will:

• Ease your concerns and answer any questions you may have. • Explain the different treatment options for your cancer based on nationally and locally endorsed treatment guidelines. • Discuss any clinical trials that may be available to you. • Schedule consultations for you and your family with specialists as needed. • Provide information and literature relative to your specific diagnosis, treatment, and follow-up care. Click HERE to learn more.

Patient Navigator Amber O’Leary, RN (l), chats with patient Karen Burt (r)

Oncology Social Work The oncology social workers in the MaineHealth Cancer Care Network help people with cancer and their families deal with the emotions, stress and changes that come with a cancer diagnosis. People with a cancer diagnosis face a lot of new information and decisions that can feel overwhelming. Social workers have the information that can make tasks easier for people and help them better cope. The oncology social workers in the MaineHealth Cancer Care Network are Masters-level and licensed clinical social workers who specialize in working with people with cancer. They help patients and their families address issues such as adjusting to a cancer diagnosis, trouble sleeping; worries about the future; medical costs and job concerns; and how to talk with family, friends, and co-workers about their experience. If you would like more information on how to access social work services, please speak to your provider for a referral and/or click here.

Nutrition Guidelines for Cancer Survivors Recommendations from the American Cancer Society

Some of the most important cancer risk factors that can be changed by an individual include consuming a healthy diet, maintaining a healthy body weight, being physically active, and avoiding tobacco use. In future editions, we’ll include some easy-tomake, healthy recipes. In the interim, feel free to learn more by checking out the American Cancer Society Guideline for Diet and Physical Activity for Cancer Prevention

Oncology Rehabilitation Cancer and cancer treatment can cause survivors to experience various challenges throughout their daily lives. These challenges are often physical, with the most common being cancer-related fatigue. For some, cancer-related fatigue can be associated with muscle weakness, and/or loss of cardiovascular endurance (loss of capacity in the heart and lungs). Some cancer medications have an impact on the muscles (such as steroids), while others may impact heart function directly (certain chemotherapies). Other physical complaints can be tightness of the joints and muscles, which can be associated with surgery and/or radiation therapy. Tightness can lead to lost range of motion, which may impact daily activities like getting dressed or even chewing.

Some survivors may experience balance problems or difficulty with fine motor tasks (e.g. tying shoes or buttoning buttons), which can be seen with neuropathy, or loss of nerve function, in the hands and feet from certain types of chemotherapy. Some survivors will experience lymphedema, a chronic swelling condition, following the removal of lymph nodes and/or radiation therapy to lymph nodes. Other survivors may experience symptoms associated with the muscles of their pelvic floor, such as incontinence (loss of bowel or bladder function), or pelvic pain.

Speech language pathologists also provide care to address communication and swallowing. The rehab teams across the MaineHealth Cancer Care Network offer a full spectrum of services to meet the needs of cancer survivors. Teams of experienced physical, occupational and speech therapists can address a variety of cancer-related symptoms and conditions to help to improve the life of cancer survivors across the state. Ask your provider about rehab services including physical therapy to address balance issues and pelvic health therapy, occupational therapy to provide lymphedema management and support for activities of daily living,, and speech therapy for head and neck cancer survivors to address speech and swallowing function. Click HERE to see rehab services by facility.

Physical Activity in Cancer Survivorship Activity Guidelines from the American College of Sports Medicine

The American Cancer Society has collaborated with the American College of Sports Medicine (ACSM) Moving Through Cancer Initiative to develop a new, evidence-based booklet for cancer survivors called Moving Through Cancer: A Guide to Getting and Staying Active During Cancer Treatment . The booklet explains the how, what, why, and when of physical activity during and after cancer treatment.

Addressing Cancer-Related Fatigue

From the Oncologic Academy of the American Physical Therapy Association What is cancer-related fatigue? Cancer-related fatigue (CRF) is defined by the National Comprehensive Cancer Network (NCCN) as a “distressing, persistent, subjective sense of physical, emotional, and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning. Compared with the fatigue experienced by healthy individuals, CRF is more severe, more distressing, and less likely to be relieved by rest.” 1 CRF is reported more frequently than any other symptom of cancer and cancer treatment and affects 70-80% of cancer survivors at all stages of disease and recovery – during treatment, in advanced disease, and in remission. 2 What causes cancer-related fatigue? CRF can be a side effect of many common cancer treatments such as chemotherapy, radiation, surgery, and stem cell transplant. In some cases, it may also be due to the cancer process itself. Other preexisting health conditions may also increase fatigue symptoms related to cancer or cancer treatment. How do I know if I have cancer-related fatigue? There is no single way to diagnose CRF as it is experienced differently by different people. Signs and symptoms of CRF can include but are not limited to: • Feeling tired, weary, exhausted even after a good night’s sleep • Lack of energy/prolonged tiredness after activity • Weakness, heaviness in arms/legs • Listlessness or irritability • Trouble starting or finishing tasks due to tiredness • Needing to sleep during the day • Unable or needing help to do usual or desired activities • Being too tired to eat • Difficulty with concentration and memory • Limiting social activities due to tiredness Treatment for Cancer-Related Fatigue To date, the only intervention for CRF supported by research evidence is exercise. In particular, aerobic endurance training in combination with moderate resistance strength training have been shown to improve physical performance and reduce fatigue and are recommended as essential components of treatment by the NCCN.3 Full publication and references available here: CRF-Fact-Sheet-for-Consumers.pdf (oncologypt.org)

Tips for Addressing Cancer-Related Fatigue Communication is key: Discussing symptoms with your providers is the first step. They may consider testing (e.g. lab work), and/or recommend you see one or more specialists. Eating a healthy diet, staying hydrated, having good sleep habits, and getting regular physical activity are also important. Tracking symptoms can help: Providers may ask about the frequency (how often) and intensity (how severe) your symptoms of fatigue may be. Your provider may ask how intense your fatigue is on a 0-10 scale, where 0 is no fatigue and 10 is the most severe fatigue possible. Having an understanding of trends can also be helpful to know how symptoms change over time. A monthly calendar for recording your fatigue level can work well to keep track, identify patterns, and help to remember when discussing symptoms with your provider.

Fatigue Scale

Moderate 4-6

Mild 1-3 0

Severe 7-10 7

For more information about cancer-related fatigue and how to manage it, click here for an informative video: Cancer Related Fatigue – YouTube For information on how physical activity can help cancer-related fatigue, please check out this helpful guide from the American Cancer Society and the American College of Sports Medicine: Moving-through-Cancer-booklet-DIGITAL_2023.pdf (exerciseismedicine.org)

Need Help with Tobacco Cessation? Contact the Maine Quit Link

Spiritual Care

What we do:

• Chaplains of many faiths are available to speak to, or pray with patients who so desire. • Chaplains are also available to administer special sacraments of faith. • The Alexander B. Cairns Memorial Chapel, located on the first floor of the Maine General Building, is available at all hours for prayer and reflection. Devotional materials are available. • Denominational and ecumenical services are held weekly and seasonally for patients, families, and employees. In addition, special services are held to commemorate special events. • We recognize the importance of the relationship between spirituality and physical health and the role that pastoral and spiritual caregivers provide in this process.

Virtual Prayer Book The Chaplains at Maine Medical Center have a tradition of praying for our patient, staff, and community needs during our daily meetings. You can request prayers by entering them either in the prayer book kept in our Chapel, via email or using our webform. Please use first names only and keep your request brief. Requests will be monitored daily and will be placed on the prayer list for our next meeting. Your request for prayer is a sacred trust and will be kept confidential.

Well-Wish Link If prayer is not your need or custom, our Spiritual Care department is happy to receive your wish for well-being. This can be for a specific individual or more generally for our health care staff. You can send a message of encouragement and support via email or use our webform. Please keep your message positive and brief. Our Chaplain staff rounds in the hospital daily and will share your message with the appropriate person or group. All messages shared will be edited to remove any personal information about the sender. Please know that we will receive your well-wish with gratitude, and share it in a spirit of honor and trust.

MyChart What does MyChart allow you to do? • Manage Your Appointments • Review Visit Notes • Access Test Results • Access a Loved One’s MyChart • Receive MaineHealth announcements • Pay your bill online Sign up here: MyChart - Sign Up (m ainehealth.org ) Already signed-up? Log in here to access your information: MyChart - Login Page (mainehealth.org)

Diagnosis-Specific Resources

Adolescent & Young Adult (AYA) Resources

P A TIENT

E D U C A TION

Adolescent-Young Adult (AYA) Survivor Internet Resources Community Building and General Information: Website Address

Description

Open your smartphone camera and aim it at this QR code.

https://cactuscancer.org/

Cactus Cancer Society’s mission is to provide a safe space where young adults facing cancer can connect, cope, and thrive with one another in an online community through creativity and expression.

https://elephantsandtea. com/

Elephants and Tea’s mission is to help adolescent and young adult (AYA) patients, survivors, and caregivers know they are not alone in their fight with cancer. The “Elephant” in the room is cancer. “Tea” is the relief conversation provides. They have the only magazine written for and by the AYA cancer community where they can tell their story in their own words.

https://stupidcancer.org/

Stupid Cancer helps to empower everyone affected by adolescent and young adult (AYA) cancer by ending isolation and building community. Cancer survivors can connect with other cancer survivors with the same diagnosis.

https://www.cancer.net/ navigating-cancer-care/ young-adults-and-teenagers

The American Society of Clinical Oncologists has patient information on AYA survivorship.

https://www.nccn.org/ patients/guidelines/content/ PDF/aya-patient.pdf https://www.youngsurvival. org/

National Comprehensive Cancer Network has a guideline for adolescents and young adults with cancer.

Young Survival Coalition is a group focused on facing breast cancer in young adults together. They have local chapter meetings in Portland. Continued

MAINEHEALTH

Website Address https://www. manuptocancer.com/

Description Man Up to Cancer inspires men to connect and avoid isolation throughout their cancer journeys. They are changing what it means to “Man Up” in the face of cancer.

https://cancerdudes.org/ about/

Cancer Dudes empowers men to thrive after cancer.

https://ulmanfoundation. org/#

The Ulman Foundation changes lives by creating a community of support for young adults and their loved ones who are impacted by cancer.

https://www. cancersupportcommunity. org/

The Cancer Support Community, or Gilda’s Club, offers support for cancer survivors beyond treatment.

Healthy Behaviors:

Website Address

Description

Cancer Screening https://www.cdc.gov/ cancer/dcpc/prevention/

All cancer survivors should follow the routine screening recommendations from their doctor. The recommendations will be based on the diagnosis and cancer treatment history. The goal is to help prevent new cancers through screening and early detection.

Healthy Living https://www.nccn.org/ patients/guidelines/content/ PDF/survivorship-hl-patient. pdf

Survivorship care includes recovering from cancer and promoting health. This guide from the National Comprehensive Cancer Network includes information on physical activity, food and supplements, weight, and preventing infections.

Stopping Tobacco Use and Vaping https://mainequitlink.com/

Maine Quit Link provides evidence-based support for quitting all forms of tobacco and vaping.

Continued

MAINEHEALTH

Website Address

Description

Nutrition https://www.cancer.org/ healthy/eat-healthy-getactive/eat-healthy.html

Good health starts with good nutrition. The American Cancer Society has tips and recipes to help you and your family make healthy food choices.

Physical Activity https://www. exerciseismedicine.org/ assets/page_documents/ EIM_Rx%20for%20Health_ Cancer.pdf

Physical activity plays an important role in cancer prevention, recovery, and treatment. The American College of Sports Medicine has done research and has released exercise guidelines for cancer survivors.

Sleep https://www.cancer.gov/ rare-brain-spine-tumor/ living/symptoms/sleepdisturbance

A brain or spine tumor, side effects from treatment, or cancerrelated anxiety can all be reasons for having problems with your sleep. Talk to your physician about your treatment options.

Mindfulness MaineHealth.org/ LendingLibrary

Contact the Learning Resource Center to request physical, electronic and audiobooks relating to Mindfulness Based Stress Reduction.

Managing Symptoms: Website Address

Description

Anxiety https://www.cancer .gov/ about-cancer/coping/ feelings/anxietydistress- pdq https:// www.mainehealth. org/cancer/cancersupport-resources/ oncology-socialworkers

The National Cancer Institute offers support for anxiety.

MaineHealth Oncology Social Workers offer services to help cope with anxiety.

Continued

MAINEHEALTH

3 2

Website Address

Description

Anxiety

Meditation and Relaxation Apps: available for download on Google Play: https://play.google.com/ store/apps or the Apple App Store: https://www.apple.com/ app-store/ https://mainehealthlrc. overdrive.com/ The Generalized Anxiety Disorder Workbook: https:// mainehealthlrc.overdrive. com/media/2517961

Learning skills such as meditation and mindfulness can be helpful in survivorship. There are several apps available to practice these skills:

• Insight Timer: Meditation • Calm: Sleep, Meditate, Relax • Headspace: Mindful Meditation The MaineHealth Learning Resource Center makes it easy to get the information you need to make health decisions for yourself and your loved ones. They have a wide variety of resources available, including health and wellness books, eBooks and audiobooks.

The Worry Workbook: https://mainehealthlrc. overdrive.com/ media/3750712

Physical Rehabilitation https://www.cancer.org/ treatment/survivorshipduring-and-after-treatment/ be-healthy-aftertreatment/what-is-cancerrehabilitation.html

Cancer and its treatment can cause physical, psychological, and cognitive problems. These problems can make it harder to do daily activities or return to work. Cancer rehabilitation can help with these problems, which can happen during and after cancer treatment. The American Cancer Society has more information about physical rehabilitation. Referral is recommended and you can discuss your options with your physician.

Lymphedema (swelling) www.lymphnet.org

The National Lymphedema Network is dedicated to promoting the awareness of lymphedema (swelling) and empowering people with lymphedema to live life to the fullest.

Continued

MAINEHEALTH

3 3

Website Address

Description

Cognitive Issues https ://www.cancer.g ov/ aboutcancer/treatmen t/ sideeffects/memory/ cognitive-impairm entpdq

Neuropsychology testing may be helpful to assess information processing, attention, memory and executive functions. For some people, school or work accommodations may be needed to support daily activities. Interventions such as cognitive behavioral therapy may be helpful. You can find more information about cognitive issues on the National Cancer Institute webpage. You can discuss your options with your physician or counselor.

Tinnitus (Ringing in the ears) Tinnitus Retraining may help with ringing in the ears, and is offered by some audiology centers. Referral is required. You can discuss this option with your physician.

• Northern Light Mercy Hospital ENT, Portland (207-535-1150) https://www.nidcd. nih.gov/ health/tinnitus

• Fagan Center for Audiology, Portland (207-228-9758) • Audiology Center of Maine, Ellsworth (207-430-3714)

Genetics Website Address

https://www.maine health. org/maine-medicalcenter/ services/cancer-inst itute/ cancer-riskprevention- clinic

Description The Cancer Risk and Prevention Clinic at Maine Medical Center’s Cancer Institute is for people who are concerned about their own risk or other family members’ risk of cancer. Although most cancers are not “inherited,” some families have a higher risk of cancer and could benefit from early detection or steps to lower their risk. The experts at the clinic help patients and their families understand how their genes may affect their risk for cancer and how they can manage this risk. They can help you to understand your options and to choose the best one for you and your family.

Continued

MAINEHEALTH

3 4

Website Address

Description

https://www.facingourris k. org

FORCE’s (Facing our Risk of Cancer Empowered) mission is to improve the lives of individuals and families affected by hereditary breast, ovarian and related cancers. FORCE also has a peer navigator program for peer support.

Sexuality, Body Image, and Fertility: Website Address

Description

Sexuality in People Assigned Female at Birth https://www.cancer.gov/ about-cancer/treatment/ side-effects/sexualitywomen

People assigned female at birth being treated for cancer may experience changes that affect their sexual life during, and sometimes after, treatment.

Sexuality in People Assigned Male at Birth https://www.cancer.gov/ about-cancer/treatment/ side-effects/sexuality-men

People assigned male at birth being treated for cancer may experience changes that affect their sexual life during, and sometimes after, treatment.

Sex Therapy https://www. psychologytoday. com/us/therapists/ maine?category=sex therapy

Licensed Sex Therapists address the physiological processes associated with sexual dysfunction. You can speak with your physician about this option.

LGBTQIA+

https://www.escapeayac. org/

The mission of Escape is to provide a sense of escape for LGBTQIA+ adolescent and young adult cancer patients, survivors, and caregivers.

Body Image https://www.cancer.gov/ about-cancer/coping/selfimage

Cancer and its treatment can change how you look and feel about yourself. You can check out the National Cancer Institute for some ways to cope.

Continued

MAINEHEALTH

3 5

Website Address

Description

Fertility

https://www.savemyfertility. org/

https://www.livestrong. org/what-we-do/program/ fertility http://www. allianceforfertility preservation.org/

https://www.reprotech.com/ vernas-purse/

SaveMyFertility.org is an authoritative resource for adult cancer patients and the parents of children with cancer who want to learn more about preserving their fertility before and during cancer treatment. They also provide information and guidance to oncologists, endocrinologists, and other health care providers concerned with the reproductive health of cancer patients and survivors.

Livestrong Fertility is dedicated to providing reproductive information, resources, and financial support to survivors whose cancer and its treatment present risks to their fertility. The Alliance for Fertility Preservation is a nonprofit organization. The Alliance is made up of a team of professionals who have chosen to join together to advance the field of fertility. ReproTech strives to make fertility preservation services available to all individuals who are facing fertility-threatening treatment. They are proud to offer a generous financial assistance program to patients faced with financial challenges, particularly at a time when it is hardest to handle.

Work, Finances, Scholarships and Grants: Website Address

Description

Work

https://triagecancer.org/

https://www. cancerandcareers.org/en

Triage Cancer is a national, nonprofit organization that provides free education on the legal and other day to day issues that may impact individuals diagnosed with cancer and their caregivers, through events, materials, and resources. The mission of Cancer and Careers is to empower and educate people with cancer to thrive in their workplace by providing expert advice, interactive tools, and educational events. Continued

MAINEHEALTH

3 6

Website Address

Description

Finances https://www.mainehe alth. org/cancer/cancersupport-resources/ oncologysocial-workers http://www.thesamf und. org/ https://www.mainehe alth. org/Cancer/CancerSupport-Resources/ Oncology-FinancialCounselors

MaineHealth Oncology Social Workers offer support to address financial concerns and help to access appropriate financial resources and services. Samfund programs provide support for young adult cancer survivors in the United States as they recover from the financial impact of cancer treatment. Through direct financial assistance and free online support and education, Samfund grants help young adults move forward towards their personal, professional, and academic goals. MaineHealth Oncology Patient Financial Navigators can answer any questions you may have about paying for treatment and help with billing and payments. This is a free service.

Scholarships

https://cancerforcoll ege. org/ https://www.scholars hips. com/financial-aid/ collegescholarships/ scholarships-bytype/ cancerscholarships/ https://www.lls.org/ll sscholarship-bloodcancer- survivors

Cancer for College provides need-based college scholarships and educational experiences to cancer survivors. To help students fighting cancer afford an education, numerous cancer foundations have created scholarships. To find additional awards, you may search for free college scholarships at Scholarships.com.

The Leukemia & Lymphoma Society (LLS) Scholarship for Blood Cancer Survivors provides up to $7,500 to cover tuition for virtual (online) or in-person vocational, two-year, or four-year undergraduate education.

Grants

https ://allysonwhitney.org/

The Allyson Whitney Foundation primarily provides young adult cancer patients, between 16 and 36 years old with “Life Interrupted Grants™” to ease their financial burden so that they can focus their energy on healing. Continued

MAINEHEALTH

3 7

Support programs and Camps: Website Address

Description

The Dempsey Center is a local center for AYA support groups, adult counseling, wellness activities, grief and bereavement, and the buddy to buddy program. The Healing Tree Youth and Family Services provides www.dempseycenter programs and services for children, teens, parents and guardians. They have locations in South Portland, Lewiston and a virtual center called .org Dempsey Connects.

https://www.crcofw m.org/

Cancer Resource Center of Western Maine provides resources and services that enhance the lives of individuals and loved ones facing cancer. This resource is only available for those in Oxford county.

https://www. bethwrightcancer center. org/

The Beth C. Wright Cancer Resource Center grew from their vision of providing education and support for cancer patients and their families by offering free programs in a warm and welcoming environment. They have a location in Ellsworth as well as some virtual (online) options.

https://ww w.

Camp Sunshine provides retreats combining respite, recreation, and support, while enabling hope and promoting joy. This program is for children with life- threatening illnesses and their families, through the various stages of a child’s illness.

campsunshi ne.org/

First Descents (FD) is a recognized leader in outdoor adventure programming. Through outdoor adventures, skills development, and local adventure communities FD improves the long-term survivorship of young adults https://firstdescents. impacted by cancer. org/ Our participants experience free outdoor adventure programs that empower them to climb, paddle, and surf beyond their diagnosis, reclaim their lives, and connect with others doing the same.

This list is for you to use as a helpful tool to find resources and information. This does not mean we endorse any particular provider, concept or resource listed in this document.

150527 12/22

MAINEHEALTH

551841-22

3 8

Pediatric, Adolescent and Young Adult Survivorship Clinics

Our clinics are devoted to improving the health and well-being of people who have been treated for cancer. We offer two separate programs: • Pediatric Cancer Survivorship Clinic: Under age 18: 207-396-7565 • Adolescent and Young Adult (AYA) Cancer Survivorship Clinic: Age 18 and older: 207-396-7788 • Adult Survivorship Care: Please discuss any questions or concerns directly with your oncology and primary care providers. We recognize that everyone's experience with cancer is unique. Some individuals will have few, if any late effects while others may have late effects for which they will need long term management. Our goal is to help you find your “new normal” and to live your life to its fullest. We can help you understand and cope with: • Managing body image issues • Regaining your physical strength and how to live as actively as possible • Reducing the risk of additional cancers and chronic diseases though improvements in diet and lifestyle • Returning to work

Bladder Cancer Resources

The Bladder Cancer Advocacy Network, or BCAN, was founded in 2005 and is the only national advocacy organization devoted to advancing bladder cancer research and supporting those impacted by the disease. BCAN is on the front-lines advocating for greater public awareness and increased funding for research to identify effective treatments and eventually, a cure for bladder cancer. Click HERE to access.

The National Comprehensive Cancer Network® (NCCN®) is a notfor-profit alliance of 32 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. By defining and advancing high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers around the world. Click HERE to access.

Blood Cancer Resources

The Leukemia & Lymphoma Society (LLS) was born out of a family's grief following the death of their teenage son. Robert "Robbie" Roesler de Villiers, son of a well-to-do New York family, was only 16 when he quickly succumbed to leukemia in 1944. Five years later, frustrated by the lack of effective treatments for what was then considered a hopeless disease, parents Rudolph and Antoinette de Villiers started a fundraising and education organization in their son's name. Headquartered in a small Wall Street office, the Robert Roesler de Villiers Foundation had only a few volunteers and a tiny budget. The task was daunting. Most leukemia patients, especially children, died within three months. Even by the mid-1950s, when the first-generation chemotherapy drugs began appearing, the disease remained a stubborn challenge. The Foundation reported in its 1955 annual report: "As of this date, Leukemia is 100% fatal. This is almost a unique situation among the many diseases to which man is susceptible." Driven by the de Villiers' nearly boundless belief that leukemia and other blood cancers were indeed curable, the Foundation grew steadily, opening its first chapters in the New York City area. The organization, after changing its name to The Leukemia Society, was renamed The Leukemia Society of America in the 1960s to communicate a broad, national reach. Click HERE to access.

Breast Cancer Resources

P A TIENT

E D U C A TION

Breast Cancer Internet Resources Good overview:

QR Code Website Address

Description Open

your smartphone camera and aim it at this QR code.

www.lbbc.org

Living Beyond Breast Cancer is an organization that provides up to date information and support for people with breast cancer. They have programs specifically designed for young women, Latinas, AfroAmerican women.

www.breastcancer.org

A good site for overall information.

www.Breast360.org

American Society of Breast Surgeon’s patient education site.

www.cancer.org

American Cancer Society’s site has good general information and resources for all cancers.

www.cancer.gov

The National Cancer Institute’s website has good information about all cancers. It also lists current clinical trials.

www.cancer.net

Patient information from the American Society of Clinical Oncologists.

Dr. Susan Love’s research foundation. Excellent www.drsusanloveresearch.org source for understanding results of new trials. Good resource for making decisions regarding types of therapy. Continued

MAINEHEALTH

Breast Reconstruction: QR Code

Website Address www.breastfree.org

Information about the decision of whether or not to have breast reconstruction after a mastectomy.

www.plasticsurgery.org/ reconstructive-procedures/ breast-reconstruction

Information about the reconstruction process.

www.cancer.org/ cancer/breast-cancer/ reconstruction-surgery.html

Information from the American Cancer Society.

Lymphedema : QR Code

Description

Website Address

Description

www.lymphaticnetwork.org

Lymphatic Education & Research Network. FAQs about lymphedema, opportunity to connect with experts and get other resources.

www.lymphnet.org

The National Lymphedema Network is dedicated to promoting the awareness of lymphedema and empowering people with lymphedema to live life to the fullest.

See Breast Cancer-Related Lymphedema handout included in this binder.

The handout has information about breast-cancer related lymphedema for patients who have NOT been told they have lymphedema.

Continued

MAINEHEALTH

Advocacy: QR Code

Local supports: QR Code

Website Address

Description

www.stopbreastcancer.org

National Breast Cancer Coalition. Advocacy and educational groups for those affected by breast cancer.

www.komen.org

Education, support and advocacy for breast cancer.

Website Address

Description

www.dempseycenter.org

Local center for support groups, adult counseling, wellness activities, grief and bereavement and the buddy to buddy program. The Healing Tree Youth and Family Services provides programs and services for children, teens and parents and guardians.

www.cgcmaine.org

The Center for Grieving Children has a Tender Living Care Program for children who have a loved one with a serious illness.

www.youngsurvival.org

A group focused on facing breast cancer in young adults together. Local chapter meetings in Portland.

Continued

MAINEHEALTH

Genetics/hereditary breast cancer: QR Code

Website Address

Description

www.breastcancer.org/ symptoms/testing/genetic

Discussion of hereditary risks of breast cancer.

www.facingourrisk.org

Click on “Cancer Risk & Prevention Clinic” in the left-hand column. Information about Maine Medical Center’s Cancer Risk and Prevention clinic. www.mmc.org/cancerinstitute The clinic can help you learn about your risk for hereditary cancer and whether genetic testing is right for you or your family.

Fertility: QR Code

Website Address

Description

www.fertilehope.org

Organization that gives information regarding options for preserving fertility. Now part of the Lance Armstrong Foundation.

www.savemyfertility.org

A good site for information on preserving fertility both before and after treatment for cancer.

This list is for you to use as a helpful tool to find resources and information. This does not mean we endorse any particular provider, concept or resource listed in this document. 4 148138 12/22

MAINEHEALTH

591666-22

Click HERE to learn more about lymphedema and treatment strategies.

Colorectal Cancer Resources

In both men and women combined, colorectal cancer is the second-leading cause of cancer deaths, yet it can be prevented or detected at an early stage. The disease forms in the colon or rectum. MaineHealth provides screening, diagnosis, and treatment for colon cancer and all gastrointestinal (GI) cancers. Screenings for colon cancer can be close to home at community hospitals and specialty practices. Our physician specialists include board-certified colorectal surgeons. Click HERE to access.

At the American Cancer Society, we have a vision to end cancer as we know it, for everyone. We're improving the lives of cancer patients and their families through advocacy, research, and patient support to ensure that everyone has an opportunity to prevent, detect, treat, and survive cancer. Click HERE to access information on colorectal cancer.

Welcome to the Androscoggin Ostomy Support Group. We are a local support group for people who have or will have ostomy surgery. Our group provides hope, support, encouragement, and understanding. We provide an opportunity to meet fellow ostomates, have questions answered, and participate in or listen to informal sharing. Meetings are free and open to anyone interested in receiving help or information about ostomies. Agendas usually include an informational speaker or a representative from an ostomy supplier. A certified ostomy nurse is present at most meetings. Ostomates, Relatives, Caregivers, and Friends are welcome. If you choose to become a member, you can do so at any meeting. Click HERE to access.

Colorectal cancer is a disease in which cells in the colon or rectum grow out of control. Sometimes it is called colon cancer, for short. The colon is the large intestine or large bowel. The rectum is the passageway that connects the colon to the anus. Sometimes abnormal growths, called polyps, form in the colon or rectum. Over time, some polyps may turn into cancer. Screening tests can find polyps so they can be removed before turning into cancer. Screening also helps find colorectal cancer at an early stage, when treatment works best. Click HERE to access.

Gynecological Cancer Resources

The Foundation for Women’s Cancer (FWC) is a 501(c)(3) nonprofit organization dedicated to increasing research, education and awareness about gynecologic cancer risk, prevention, early detection and optimal treatment. The FWC is the official foundation of the Society of Gynecologic Oncology (SGO). Click HERE to access.

. Since our beginnings in 1991, the National Ovarian Cancer Coalition has grown from an impassioned grassroots effort into a major force in raising awareness. We support survivors and caregivers, and fund research to advance treatment and find a cure.

At the Society for Gynecological Oncology (SGO), our mission is to serve patients with gynecologic cancer and work to eradicate the disease in the future. We want patients, survivors and caregivers to be part of that mission. Our educational resources and tools provide crucial information for your progress. Our programs help you connect. Click HERE to access

Head, Neck & Oral Cancer Resources

SPOHNC, a not-for-profit 501 (c) (3) organization, has become a vital component of the healing process for head and neck cancer patients. It has had an enormous positive impact on meeting the psychosocial needs of patients as well as preserving, restoring, and promoting physical and emotional health. A support organization, such as SPOHNC, can also be the foundation for patient and family education and awareness. Click HERE to access.

Our Mission: Is to advance prevention, detection, treatment and rehabilitation of oral, head and neck cancer through public awareness, research, advocacy and survivorship. Click HERE to access. Click HERE for survivorship education videos.

HNC Living Foundation is an independent 501(c)(3) nonprofit organization dedicated to helping head and neck cancer patients live life fully during and after treatment by providing financial aid. Our grants fund services and programs that directly benefit head and neck cancer patients, supporting their treatment and recovery. Click HERE to access.

WebWhispers was started in 1996 for those who had questions about larynx cancer treatments, surgery, recovery, and what life is like after laryngectomy surgery. We are now the largest support group for individual laryngectomee survivors of larynx and other throat cancers. We offer advice from those who have been there and education at the time it is needed. Our membership is composed of patients, caregivers, medical professionals and suppliers. Come join us in order to use our full facilities. It’s free to join and no dues to pay. Click HERE to access.

The National Cancer Institute (NCI) is the federal government's principal agency for cancer research and training. Our team of approximately 3,500 is part of the National Institutes of Health (NIH), one of 11 agencies that make up the Department of Health and Human Services (HHS). NCI is deeply committed to the core values of equity, diversity, and inclusion that allow all staff to reach their potential and fully contribute to the institute’s cancer mission. Click HERE to access.

Liver Cancer and Cholangiocarcinoma Resources

If you have liver cancer or are close to someone who does, knowing what to expect can help you cope. Here you can find out all about liver cancer, including risk factors, symptoms, how it is found, and how it is treated. Click HERE to access.

Bile duct cancer is a rare disease in which malignant (cancer) cells form in the bile ducts. Bile duct cancer is also called cholangiocarcinoma. A network of tubes, called ducts, connects the liver, gallbladder, and small intestine. This network begins in the liver where many small ducts collect bile (a fluid made by the liver to break down fats during digestion). The small ducts come together to form the right and left hepatic ducts, which lead out of the liver. The two ducts join outside the liver and form the common hepatic duct. The cystic duct connects the gallbladder to the common hepatic duct. Bile from the liver passes through the hepatic ducts, common hepatic duct, and cystic duct and is stored in the gallbladder. Click HERE to access.

Pancreatic Cancer Resources

PanCAN Patient Services is the place to contact when facing pancreatic cancer. Our highly trained and compassionate Case Managers provide free, personal one-to-one support and information about the disease. We can also find resources for any questions you have related to pancreatic cancer. No organization supports pancreatic cancer patients like we do. Through our Patient Services, we provide more resources and speak with more pancreatic cancer patients and caregivers than any other organization in the world. Click HERE to access.

The Lustgarten Foundation is the largest private funder of the world’s preeminent pancreatic cancer researchers. To date, we have funded more than $250 million in research grants and been a leading force in every major advancement in pancreatic cancer research. Progress is paramount. We drive bold, innovative research with the singular mission: transforming pancreatic cancer into a curable disease. Click HERE to access.

Prostate Cancer Resources

The MaineHealth Cancer Care Network provides our patients with the most up-to-date prostate cancer care. Our healthcare providers help patients make informed choices about a prostate cancer diagnosis and treatment. Urologists within the MaineHealth Cancer Care Network can diagnose prostate cancer through physical exams, blood tests, prostate MRI, and prostate biopsy. Click HERE to access.

Prostate cancer is the most common cancer among men (after skin cancer), but it can often be treated successfully. If you have prostate cancer or are close to someone who does, knowing what to expect can help you cope. Here you can find out all about prostate cancer, including risk factors, symptoms, how it is found, and how it is treated. Click HERE to access.

ZERO Prostate Cancer is the leading national nonprofit with the mission to end prostate cancer and help all who are impacted. ZERO advances research, provides support, and creates solutions to achieve health equity to meet the most critical needs of our community. Click HERE to access.

The Prostate Cancer Research Institute (PCRI), a 501(c)(3) not-for-profit organization that is dedicated to helping you research your treatment options. We understand that you have many questions, and we can help you find the answers that are specific to your case. All of our resources are designed by a multidisciplinary team of advocates and expert physicians, for you. We believe that by educating yourself about the disease, you will have more productive interactions with your medical professionals and receive better individualized care. Feel free to explore our website or contact us at help@pcri.org with any question that you have. Click HERE to access.

We support urologic research and strive to provide the most current, comprehensive and reliable urologic health information for patients and the public. Founded in 1987, the Foundation: Supports research professionals through grant programs, clinical trials and the publishing of the National Urology Research Agenda (NURA) Offers a vast repository of patient education materials on urological conditions Engages in public awareness campaigns, special events and community programs to help further the cause of educating those at risk and those already suffering from urological conditions Supports and advocates on a variety of issues pertaining to patient urological health, industry standards and access to care Is supported by a wide variety of corporate sponsors, endowments and individual donors Publishes Urology Health Extra magazine as a service to patients, health care professionals and the public. Click HERE to access.

Skin Cancer and Melanoma Resources

The Skin Cancer Foundation saves and improves lives. We empower people to take a proactive approach to daily sun protection and the early detection and treatment of skin cancer. Click HERE to access.

Learn about skin cancer prevention, types, and treatment options from the American Academy of Dermatology Association. Click HERE to access.

Learn about melanoma prevention, detection, types, and treatment options from Impact Melanoma. Click HERE to access. See next pages for additional information

PARTNERS IN PREVENTION. WHERE SUPPORT IS NEEDED, SUPPORT IS GAINED

By coming together with others at support groups, patients and

We know full well that a melanoma diagnosis can be a vulnerable time in a person’s life. It’s hard to grasp, and often, it’s even more difficult t o k n o w where to tu rn wh e n looking for some shouldered support. IMPACT Melanoma recognizes the strength that group settings can have when people come together to share sensitive feelings and concerns about their illness. Thus, we’ve long been on the forefront of offering support groups for patients and caregivers as an outlet to address fears and uncertainties surrounding a lifealtering diagnosis.

• Gain information about this disease

caregivers can:

• Reduce feelings of isolation • Develop coping skills

All of our support groups offered through IMPACT melanoma are free of charge and are available in multiple locations, including virtual support groups for those who may not be able to attend an in-person group.

ARE YOU IN NEED OF A SUPPORT GROUP? “Our support group has been key to my well-being through my diagnosis and healing. We learn so much from each other’s experiences regarding treatment decisions and how a diagnosis effects every aspect of life. It’s so immensely helpful to receive the unique support from others who also have a melanoma diagnosis.”

- Frank

We have many support groups in place to help you navigate your personal journey with people who have walked down a similar path, including a virtual group open to all patients regardless of where they seek treatment.

For more information about our Support Group program(s), www.impactmelanoma.org/get-support.

Thoracic Oncology Resources

Lung Cancer and Esophageal Cancer

The American Lung Association is saving lives by improving lung health and preventing lung disease. We were founded over 115 years ago by a group of volunteers dedicated to ending the lung health threat at the time: tuberculosis. With TB largely controlled in the United States, we have extended that mission to other respiratory diseases. And thanks to our donors, volunteers, program and event participants, and staff, we are America's trusted source for lung health education, lung disease research, support, programs, services and advocacy. Click HERE to access.

LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of all people diagnosed with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support, and education for all those affected by the disease. Click HERE to access.

The Esophageal Cancer Education Foundation’s mission is to bring awareness and educate the public and medical community about this dreaded disease. To walk the journey with patients who have this disease. To financially support research projects that focus on the development of an early warning test for this disease. Click HERE to access.

Financial, Insurance and Work Resources

Oncology Patient Financial Navigation What is Financial Toxicity? According to the National Cancer Institute, financial toxicity (also called financial stress, financial hardship, or economic burden) describes problems a cancer survivor has related to the cost of treatment. Research has found that cancer survivors are more likely to have financial toxicity, and usually report higher out-of-pocket spending, than people without cancer. The impacts of financial toxicity vary from person to person as cancer treatment can affect one’s ability to work and pay bills. Some cancer survivors report spending more than 20% of their annual income on medical care. 1 How can an oncology patient financial navigator help? Oncology Patient Financial Navigators help to simplify a complex journey. We know that a cancer diagnosis is scary and emotional. You might be feeling overwhelmed with new information about your diagnosis, tests, treatment options, medicines, symptoms, office visits. Many patients tell us they are also worried about how much their treatment will cost and how they will pay for it. We are here to help: You will have the opportunity to connect 1-on-1 with an Oncology Patient Financial Navigator. They will help by: • Answering your insurance questions and explaining your benefits and out-of-pocket costs • Setting up payment plans • Connecting with the billing teams to deal with questions or issues • Applying for additional financial resources, including medicine cost assistance, Social Security benefits, and Medicaid coverage How much does this cost? This is a completely free service for you and your loved ones. To Connect with an Oncology Patient Financial Navigator: Call 207-661-0161 or 207-661-0160 to speak with one of our Oncology Patient Financial Navigators. 1. PDQ® Adult Treatment Editorial Board. PDQ Financial Toxicity (Financial Distress) and Cancer Treatment. Bethesda, MD: National Cancer Institute. Updated 9/20/2019. Available at: https://www.cancer.gov/about-cancer/managing-care/track-care-costs/financial-toxicity-pdq. Accessed 2/8/2023. [PMID:

The mission of Cancer and Careers is to empower and educate people with cancer to thrive in their workplace by providing expert advice, interactive tools, and educational events. Click HERE to access.

Working During Cancer Treatment:

The American Cancer Society offers tips on communicating with your employer and co-workers, tips for working during treatment, and legal protections for people working with cancer. Click HERE to access.

Additional Resources

Each spring, the American Cancer Society releases the latest information available about cancer in the US. In addition to cancer facts, it includes information about cancer risk factors and a special section on lung cancer. Click HERE to read.

Every few years, the American Cancer Society releases the latest information available about cancer survivorship in the US. Click HERE to read.

Expert information and supportive resources from a trusted source over the phone (1800-227-2345) or at their interactive website: cancer.org Survivorship: During and After Treatment (cancer.org) The American Cancer Society uses the term cancer survivor to refer to anyone who has ever been diagnosed with cancer no matter where they are in the course of their disease. In this section you'll find information and tips on staying active and healthy during and after cancer treatment. You can also get information on managing your health care as a cancer survivor. Cancer Survivors Network Our Cancer Survivors Network provides a safe online connection where cancer patients and caregivers can find others with similar experiences and interests. As a member, you can participate on discussion boards, join a chat room or build your own support network. To become a member, visit csn.cancer.org Caregiver Resource Guide | American Cancer Society The American Cancer Society developed the Caregiver Resource Guide for people who are caring for a loved one impacted by cancer. This tool can help to learn how to care for yourself as a caregiver, better understand what your loved one is going through, develop skills for coping and caring, and take steps to help protect your health and wellbeing.

Coping and Living Well During Cancer Treatment Learn about how to prepare for treatment and how to adjust to life with cancer. Here you'll find information on what to eat and how to stay active during treatment, as well as ideas and resources to help you manage stress. Survivorship Videos | American Cancer Society More people than ever are surviving cancer and thriving after treatment. Watch this video series to learn how to cope with the physical and emotional challenges that come during cancer treatment and beyond, and find inspiration in the experiences of other survivors. Nutrition and physical activity guidelines for cancer survivors - 2012 - CA: A Cancer Journal for Clinicians - Wiley Online Library Cancer survivors often ask questions about food choices, physical activity, and dietary supplements. They want to learn whether nutrition and physical activity can help them to live longer or feel better. These guidelines are meant to answer some of those questions. Developed by an American Cancer Society (ACS) panel of experts, they will give you as a cancer survivor and your family the information you need to make informed decisions about your food and physical activity choices Nutrition and Physical Activity Guidelines for Cancer Survivors Cancer survivors are often highly motivated to seek information about food choices, physical activity, and dietary supplements to improve their treatment outcomes, quality of life, and overall survival. This report summarizes the evaluation of the scientific evidence and best clinical practices by a group of experts in nutrition, physical activity, and cancer survivorship.

Living Well After Cancer Treatment The end of cancer treatment can be both stressful and exciting. Here you'll find information about life after cancer, including eating well, being active, and returning to work from the American Cancer Society.

Our Mission at Livestrong: Which everyday cancer problem will we fix today? We have a Mission Question, not a Mission Statement, because we believe that we can only achieve the best solutions through asking the right questions. We ask survivors and caregivers what they need, we ask the system how it can be more person-centered, we ask innovators how we can bring impossible ideas to life. Click HERE to access.

The National Comprehensive Cancer Network® (NCCN®) is a not-for-profit alliance of 32 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. By defining and advancing high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers around the world. Click HERE to access.

The best cancer care starts with the best cancer information. With nearly 45,000 members who are leaders in advancing cancer care, the American Society of Clinical Oncology (ASCO) is the voice of the world’s cancer physicians. ASCO’s patient information website -- Cancer.Net (www.cancer.net) -- brings the expertise and resources of ASCO to people living with cancer and those who care for and care about them. Well-informed patients are their own best advocates and invaluable partners for physicians. Cancer.Net provides timely, comprehensive information to help patients and families make informed health care decisions. Cancer.Net is supported by Conquer Cancer ® The ASCO Foundation. Click HERE to access.

The Centers for Disease Control and Prevention provide videos from cancer survivors from different backgrounds and with different diagnoses. Click HERE to access.

Resources for Survivors and Caregivers A central place to coordinate meals and help for friends and family. LotsaHelpingHands.org Learn about cancer, diagnosis, treatment, coping and survivorship. Oncolink CancerCare.org (online, phone support services). Professional oncology social workers provide free emotional and practical support for people with cancer, caregivers, loved ones and the bereaved. The National Alliance for Caregiving’s mission is to contribute to research, advocacy and innovation to make life better for caregivers. Several guidebooks are available on their website: www.caregiving.org

https://www.cancersupportcommunity.org/ Through the Cancer Support Community, MyLifeLine csc.mylifeline.org provides professional programs of emotional support, education and hope for people impacted by cancer at no charge so that no one faces cancer alone. Also available: Cancer Support Helpline (888-793-9355)

Learning Resource Center: Lending Library

Browse eBooks, audiobooks and more. We are always adding new ones! OverDrive is our virtual library where you can check out eBooks and audiobooks and download them to your device. Email us your name and mailing address at learningcenter@mainehealth.org for a library card number. If you’d like to see more books about a certain health topic, please let us know!

The Beth C. Wright Cancer Resource Center Serving Hancock and Washington Counties

The Beth C. Wright Cancer Resource Center provides compassion, support, wellness groups, advocacy and education for patients, families, and friends in the midst of a cancer diagnosis, treatment and/or remission. We strive to enhance cooperation, collaboration, and connection among medical providers, other nonprofit groups, social support, and educational resources in Hancock and Washington counties. Established in 2004 and located in Ellsworth, the nonprofit resource center was born from an organization created by Beth C. Wright, who died of breast cancer in 2000. Over the years, our educational, supportive, and wellness programs have expanded to several additional locations in Washington and Hancock counties. Email: info@bethwrightcancercenter.org Phone: (207) 664-0339 Address: 23 Commerce Park, Ellsworth, ME 04605

Cancer Resource Center of Western Maine Serving Oxford County and virtually statewide

199 Main St, Norway, ME 04268

The Cancer Resource Center of Western Maine is a 501c3 non-profit organization funded by private foundations, individual and corporate donations, and fundraisers. We embrace anyone affected by cancer in a community that offers hope and caring through support, education and concepts in healthy living. We offer one to one support; resource navigation services; in-person, virtual and recorded wellness programs and activities; support groups for men and women; complementary therapy; travel and food assistance; and a variety of comfort items - all FREE - to anyone impacted by cancer....because no one should face cancer alone. EMAIL ADDRESS: info@crcofwm.org PHONE: 207-890-0329 ADDRESS: 59 Winter Street Norway, ME 04268

The Dempsey Center

Locations in Lewiston and South Portland, and virtually statewide

29 Lowell St., 5th Floor, Lewis ton, Me, ME 04240

778 Main Street, 2nd Floor South Portland, ME 04106

Making Life Better for People Impacted by Cancer

Founded by actor Patrick Dempsey in 2008, the Dempsey Center provides personalized care through counseling, support groups, nutrition, integrative therapies, movement and fitness, and more—at no cost. Phone:1-877-336-7287 Please click here for their program brochure: Program Brochure | Dempsey Center by Dempsey Center - Issuu

Man Up to Cancer is the helpful and headstrong community built to inspire men — and the people who love them — to connect and avoid isolation throughout our cancer journeys. Too often, men “check out” after a cancer diagnosis. We struggle with shame, depression, and loss of identity, all of which can lead to poor outcomes. Man Up to Cancer provides a wide range of digital content, as well as an insanely engaged Facebook group, to tackle the isolation problem head-on. Founded by stage IV colon cancer survivor Trevor Maxwell, Man Up to Cancer operates as a purpose-driven company. It combines the revenuegenerating engine of a for-profit enterprise with the fierce heart of a nonprofit. We’re on a mission to change the definition of “Man Up.” For us, it means reaching out instead of isolating, and having the courage to accept help. Manning up isn’t just about being tough. It’s about knowing we are smarter and stronger as a pack than we are as lone wolves. Click HERE to access.

Post-treatment Survivorship Resources

P A TIENT

E D U C A TION

Life After Cancer Treatment

Now that you have completed your active cancer treatment, you may be wondering –what comes next? This handout has information about the transition into life after cancer treatment and suggestions to help you be as healthy as possible as you get back to your daily life routines.

Common Concerns Life after treatment can be filled with lots of questions and mixed emotions. While you may be relieved to be done with treatment, you may feel disconnected, alone, or worried. There may be new medical needs and difficult changes as you transition back to your daily life. All of this can make recovery stressful. While everyone is different, the following are some common concerns:

• Ongoing fatigue or feeling worn-out for up to a year or more. • Depression, anxiety and worry about such things as health, finances, or returning to work. • Changes in your thinking such as trouble concentrating or forgetting things. • Physical changes to your body that make some daily activities difficult.

After Treatment Visit and Survivorship Care Plan Once your active cancer treatment has ended, you may be scheduled for a visit with a member of your cancer care team to learn about the plan for your ongoing care and discuss any remaining concerns or issues you may have. You will receive a summary of your follow-up plan, usually called a Survivorship Care Plan. Keep this for your records and share it with your primary provider. The visit usually includes a conversation about:

• The plan for your follow-up, including a schedule for future office visits and tests. • A plan to manage any ongoing symptoms. • Possible side effects from your cancer treatment that might happen in the future. • Referrals to specialists to help with specific concerns, if needed. • Living a healthy lifestyle to help reduce your future cancer risk and to feel as well as possible. • Other supportive services that can help address some of the needs that arise after treatment. Continued MAINEHEALTH

Supportive Services There are specialists who can address some of the needs that arise after treatment ends. The following is a list of common specialists. Ask your provider about services that might be right for you.

• Social Workers: can help you cope with stress, as well as other concerns such as returning to work or talking with family.

• Dietitians: offer information about the best foods to improve your overall health. • Financial counselors: answer questions about bills and help find resources. • Physical, occupational and speech therapists: help with things like chronic pain, mobility, dressing and other functions such as swallowing and speaking.

More Information There are lots of places to get helpful information as you transition to life after cancer treatment. Below are some reliable and accurate resources. Before making any changes however, always discuss any information you find with your provider. Websites

• MaineHealth: www.mainehealth.org/cancer/survivorship • Livestrong: www.livestrong.org Learning Resource Center Through the MaineHealth Learning Resource Center, you can find information on specific cancers, complementary therapies, mindfulness-based stress reduction, nutrition, talking to kids about cancer, caregiving, survivorship, and more. The Learning Resource Center has health educators who can find you reliable health information and local resources as well as a library of books you can borrow. Visit MaineHealth.org/LRC or call 866-609-5183. Cancer community support centers around Maine offer a wide variety of services for people with cancer and their families. Ask a member of your cancer care team or the American Cancer Society (1-800-227-2345) about community centers near you.

2 MAINEHEALTH 146083 1/23

635251-23

Facing Forward This National Cancer Institute booklet was written to share common feelings and reactions that many people have had after treatment ended. It also offers some practical tips to help survivors through this time. Click HERE to access.

Survivorship Care for Healthy Living This National Comprehensive Cancer Network publication was written to discuss helpful strategies for health in the post-treatment period. Sections include: survivorship; physical activity; food and supplements; weight and metabolism; preventing infections; resources and words to know. Click HERE to access.

Survivorship Care for Cancer-Related Late and Long-Term Effects This National Comprehensive Cancer Network publication was written to discuss the potential effects of cancer treatment. Sections include: survivorship; hormones and hot flashes; cardiovascular disease; lymphedema; cognitive dysfunction; sexual dysfunction; fatigue; sleep; pain; distress and mental health; resources; and words to know. Click HERE to access.

Cancer Survivorship This American Society of Clinical Oncology publication was written to discuss the concepts for posttreatment survivors. Sections include: what is survivorship?; follow-up care; life after treatment; and support for coping with challenges. Click HERE to access.

Network Partners

Chapter

Our Network Partners • • • • • • • • • • •

Franklin Memorial Hospital, Farmington LincolnHealth-Miles, Damariscotta MaineGeneral Medical Center, Augusta Maine Medical Center, Portland Memorial Hospital, North Conway, NH Mid Coast Hospital, Brunswick Pen Bay Medical Center, Rockport Southern Maine Health Care, Biddeford St. Mary’s Regional Medical Center, Lewiston Waldo County General Hospital, Belfast Western Maine Health, Norway