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Sharing Winter 2014

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A NEWSLETTER FOR BREAST CANCER SURVIVORS

CHEMO BRAIN or HORMONAL THERAPY BRAIN?

Many women who get chemotherapy to treat breast cancer say they have problems remembering, thinking, and Beaumont Cancer Center concentrating during and after treatment. These problems are commonly called Mailing Address: “chemo brain” or “chemo fog” -- doctors 3577 W. Thirteen Mile Royal Oak, MI 48073-6710 call these issues “cognitive impairment” or “cognitive problems.” Some women may 248-551-8585 email: sharingandcaring@ have trouble with: • learning new tasks beaumont.edu • remembering names • paying attention and concentrating In This Issue: • finding the right words • multitasking ♥ Our Cover Story: • organizing thoughts Chemo Brain or HT • making decisions Brain? • remembering where things are ♥ Our Expert explains: (keys, glasses, etc.) Hormone Therapy A small study suggests that hormonal following Active therapy medicines may contribute to Treatment chemo brain more than chemotherapy ♥ Calendar of Events does. Breastcancer.org Professional Advisory Board member Hope Rugo, M.D., clinical professor of medicine at the University of California-San Francisco You can make Helen Diller Family Comprehensive a difference Cancer Center, led the study. The study was presented at the 2013 Breast Cancer Sharing & Caring is Symposium on Sept. 10, 2013. a non-profit organization devoted After surgery and other treatments, to the education women diagnosed with early-stage, and support of hormone-receptor-positive breast cancer breast cancer survivors. usually take some type of hormonal Donations support therapy medicine to lower the risk of programs for others recurrence (the cancer coming back). who follow in the same Tamoxifen is the hormonal therapy footsteps and can be medicine that has been approved the made by a check payable longest and is approved to treat both pre to Sharing & Caring and post-menopausal women. Research at the above address. has shown that taking tamoxifen for 10 years instead of 5 offers more benefits; so many women are now taking tamoxifen

for 10 years. The other main type of hormonal therapy medicines is aromatase inhibitors, which are approved to treat only postmenopausal women. Most women take an aromatase inhibitor for 5 years.

Women who’ve received chemotherapy to treat breast cancer have long complained about chemo brain. Still, doctors haven’t been able to find physical evidence that allowed them to diagnose the condition. Others wondered if chemo brain really exists. Some doctors think the condition is related to depression and anxiety instead of chemotherapy. This study was a prospective study, which is the strongest type of study. A prospective study means the researchers followed a group of similar people over time to see if specific treatments predicted who would have cognitive problems. There were 69 women in the study who were classified according to the type of treatment they received after surgery to remove early-stage breast cancer: • chemotherapy and 5 years of an aromatase inhibitor (33 women) • 5 years of an aromatase inhibitor only (22 women) • chemotherapy only (14 women) Women who had received chemotherapy or radiation to the central nervous system in the past, or women who had a history of psychiatric illness, serious head injury, brain/nervous system disease, or substance abuse were excluded from the study. The researchers tested the women’s cognitive functions, as well as their mood and fatigue, at the beginning of the study continued on page 3...


Greetings from

Lorelei

Greetings! I would like to thank so many of you for contributing to S&C at the years end! I would like you to know, donations go directly to programming costs, notebooks, printing the newsletter and special events. Thank you all for giving from the heart! I would also like to give a special thank you to all of you that went above and beyond to organize fundraisers for us. From cookies to makeup, we were covered! Thank you for your support and generosity. Now that winter is upon us, how about coming out for a S&C program! We have an exciting first quarter planned for you. In January we have some stellar programs. January 16th, Sister Charlotte Huettman will be talking with us about “Exploring Spirituality in the Face of a Cancer Diagnosis.” This program is for people of any faith. The 23rd brings us out for a “Field Trip” to the Ministrelli Heart Center. Dr. Anna Marandici will teach us about the effects of cancer therapies on our heart and what we can do to be heart healthy. Heart disease is the number one killer of women in our country, so this is an evening not to miss! Another concern for many women is hormonal therapy drugs which are often prescribed after surgery, chemo, and radiation. Please join us on January 30th to listen to Cancer Care Associates, Medical Oncologist Dr. Joseph Anderson. Dr. Anderson has specialized in treating breast cancer for many years and will be able to answer your questions on these therapies.

me, that you do not need to be artistic in order to make these tiles. There is a nominal charge $8 for this event to help offset the cost of the supplies. Please do not hesitate to contact us if you would like to attend but funding is an issue for you. We have slots allocated for ladies who cannot pay the supply fee. February 13th we need sewers, cutters, and scrap bookers! We will be helping to make pillows for the Angel Pillow Project. This is a perfect way to give from your heart. Read more about it in our S&C profile of Sabrina Mayhew, founder of the APP. March events bring us to two programs of interest. Medical Oncologist Dr. Laura Nadeau will be discussing Neuropathy. This is a little talked about side effect of many chemotherapies. Dr. Nadeau is an expert in this area of oncology so come with your questions! She will teach us about what neuropathy is, what you can do to potentially avoid it and how to manage it! This event will be held across from the Troy Hospital. March 13th one of our talented Genetic Counselors, Jennifer Fulbright will be presenting “Genetics with Jen.” Jen will help us navigate the world of BRCA1/2 and what’s new on the horizon in this ever changing field! Lastly, I would like to mention our Spring Symposium will be held Saturday May 3rd at the Village Club in Bloomfield Hills, So mark your calendars and save the date! More information to come. Hope to see you all soon!

Regards, Lorelei

Don’t forget to “like” us on Facebook where you’ll always find the latest goings-on at Sharing & Caring!

February brings a fun new event for S&C! February 4th we will be gathering at Song & Spirit at 3pm in Berkley. S&S is a wonderful studio where we will learn to make glass mosaic tiles. Art Director, Mary Gilhuly assured

myBeaumontChart Did you know you can get lab and imaging results online through myBeaumontChart? It’s easy. You can get test results, make an appointment for a screening mammogram, view appointment information and more online, anytime, from anywhere around the world. myBeaumontChart give you secure access to portions of your medical record. Sign up today by visiting www.mybeaumontchart.com 2


Ask t he Expert

Joseph Anderson, MD Cancer Care Associates

1. My Oncologist said I have to be on hormones for 5 years or more. Why so long? I thought my surgery and chemo took care of the cancer. For early stage breast cancer, there may be seeds that have escaped the tumor with the potential to eventually grow in other parts of the body. Many of these seeds need estrogen in order to grow. By giving medications that either decrease estrogen, or prevent estrogen from getting to these cancer seeds, the cells will eventually be starved. This process takes about 5 years in most cases 2. I was talking to another woman who has breast cancer and she is on tamoxifen but I am on Arimidex. What’s the difference? Is one better than the other? Tamoxifen does not reduce estrogen levels, rather, it prevents estrogen from activating cancer cells. Arimidex reduces the measurable level of estrogen in the blood to nearly zero. The end result for cancer suppression is similar. Arimidex does not work in premenopausal woman, because there is too much estrogen to begin with. 3. I am a bit worried about going on this medication. I have heard the side effects are horrible! My friend said her joints ache, she is depressed and she has horrible hot flashes. Are they really that bad? All medications can have side effects, including the anti hormone therapies used for breast cancer. Many patients on these medications report no side effects. It is common, especially in younger women, to experience symptoms that are typically associated with menopause, including hot flashes, sweats, and decreased libido. 25-33% of patients taking Arimidex or Femara report joint aches. Often these regress over time, and most cases can be controlled with Advil or Aleve, but a small percentage of patients choose to switch to a different preparation due these symptoms. The vast majority of patients on hormonal therapy are able to tolerate these products well, though most are happy to stop when their 5 years are up. 4. Are there any new hormonal therapies on the horizon? For patients with advanced breast cancer, hormonally resistant cancers can sometimes be made sensitive or responsive by the addition of a second drug called an mTOR inhibitor. Everolimus has recently been FDA approved for this indication.

Chemo Brain or Hormonal Therapy Brain?

continued from page 1

and then again 1 month, 9 months, and 18 months after the study started. One month after the study started, about 25% of the women had lower test scores than they did when the study started. After 9 months, 35% of the women had lower scores, and after 18 months, 30% of the women had lower scores. The scores for decision-making and language function were affected the most. Using a math formula, the researchers determined that hormonal therapy seemed to be the only factor linked to cognitive problems. Chemotherapy, fatigue, and depression weren’t linked to cognitive problems. The researchers concluded that hormonal therapy seems to be a risk factor for memory and thinking problems. The good news is that most women who have memory and thinking problems during breast cancer treatment recover and are able to remember and think clearly after treatment is done. Still, a small number of women continue to have problems for a year or more after treatment ends. From breastcancer.org, October 14, 2013 3


ALL Sharing & Caring events are RESERVATIONS REQUIRED! Please call 248-551-8585 and let us know you plan to attend. If no one is available to take your call, a message with your name, phone number and which program you want to attend will complete your registration.

January, February and March Breast Cancer Support - There’s something just right for you! Breast Cancer Support Group: Mondays, January 20th, February 17th and March 17th - 10:30am - Troy Beaumont Receiving a cancer diagnosis can be a complete derailment to life. The sudden and unexpected upheaval is very stressful. This group provides an opportunity to discuss your diagnosis and treatment with others who are going through the same experience. Feel free to attend one or all meetings. You are welcome to share your story, or simply sit back and listen. Facilitated by Oncology social worker Laurel Martinez, LMSW, LCSW, OSW-C. We will meet in the Wilson Cancer Resource Center, located in the Professional Building, 44344 Dequindre Road, first floor conference room. The building is located across the pedestrian bridge from Troy Beaumont. STAGE 4 - A Group for Women with Metastatic Breast Cancer: Tuesdays, January 21st, February 18th and March 18th - 7pm - Royal Oak Beaumont This group provides an opportunity for survivors who have metastatic breast cancer to discuss the unique challenges and issues they face. Women with stage four breast cancer often feel unable to talk about their cancer. This format provides a safe arena to converse about what is on your mind and in your heart. You are welcome to attend one or all meetings. We will be meeting in the Resource Center on the first floor of the Rose Cancer Center, Royal Oak. This meeting will be facilitated by Psychologist Dr. Sally Smolen of Mercy Works in Farmington Hills and Jennifer Martens, Oncology Nurse Clinician. Other Programs of Interest Lymphedema: Signs, Symptoms & Management: Thursday, January 9th, 7pm Royal Oak Beaumont Did you know that you should avoid hot tubs after an axillary lymph node dissection? If you didn’t, this is a great class for you! Join us as Dr. Justin Riutta will be teaching us all about lymphedema. He will be bringing Lymphedema PT, Cynthia Tan with him too. Cynthia is specially trained in lymphedema wrapping techniques and will be showing us how to properly wrap. The class will meet in Beaumont Royal Oak Rose Cancer Center in the first floor classroom. Please call to register 248-551-8585. Exploring Spirituality When Coping with Cancer: Thursday, January 16th, 7pm Royal Oak Beaumont We welcome Beaumont Chaplain, Sister Charlotte this evening. We will be discussing the difference between spirituality and religion, the role of beliefs regarding illness, the practices of spirituality in the quest for wellness. We will also examine the healing effects of spiritual practices such as: music, journaling, poetry, silence sacred stones etc. Sister Charlotte suggests bringing your own personal item” talisman” that helped you cope with your cancer. This evening is designed for people of all Faith backgrounds. We will meet in the Rose Cancer Center, first floor classroom. Please call to register 248-551-8585. Your Heart Health after Cancer Treatment: Thursday, January 23rd, 7pm Royal Oak Beaumont FIELD TRIP!! Many women who have breast cancer are treated with lifesaving chemotherapy treatment and even more are treated with radiation. Some of these treatments may have an affect on the heart. Beaumont Cardiologist Dr. Anna Marandici will teach us about good heart health after breast cancer treatments. We will take a tour of the beautiful state of the art Ministrelli Women’s Heart Center in Royal Oak. The Ministrelli Center is located just inside the East entrance to the hospital. Please call to register 248-551-8585. Whole Foods Grocery Store-West Bloomfield: Tuesday, January 28th, 3pm FIELD TRIP!! Join us as Community Relations Director Renee Mahon takes us on a tour of Whole Foods. We will discuss topics such as the benefits of locally grown foods and explain just what organic is and is it truly beneficial? Come have your questions answered and feel more comfortable in the store that can be a tad bit intimidating to many. We will meet at the Whole Foods store 7350 Orchard Lake Road, West Bloomfield 48322. Please call 248-551-8585 4


to register for the program-space is limited! What is Hormonal Therapy for Breast Cancer, and Do I REALLY NEED IT?: Thursday, January 30th, 7pm Royal Oak Beaumont S&C welcomes a new-to-Beaumont Medical Oncologist and speaker, Dr. Joseph Anderson from Cancer Care Associates. Dr. Anderson will be presenting the latest information on how these “hormonal” drugs work, the optimal duration of therapy, why some women need hormonal therapies and others none. He will also review possible side effects and pass along a few tips on how to manage them. The class will meet in the Royal Oak Rose Cancer Center first floor classroom. Please call to register at 248-551-8585 Art Workshop at Song and Spirit Institute for Peace: Tuesday, February 4th, 3pm FIELD TRIP!! Learn to make beautiful glass mosaic tiles. You need not be an artist to create an amazing piece, art can be a very therapeutic and cathartic experience. The workshop setting is a wonderful fellowship time with other survivors. We hope you will join us for this incredible opportunity! S&C has received a donation from a survivor to offset the cost of this program, so we are able to offer this for just the cost of supplies, which is $8. To register by credit card please call Physician Referral 1-800-633-7377, or online at classes.beaumont.edu or call Sharing & Caring at 248551-8585 to send a check. If you would like to attend this program but cannot afford the cost please call S&C at 248-551-8585 to discuss options. Also, due to the type of event, capacity is strictly limited to 20 people! You must call to register so we can reserve your work space! Song and Spirit Institute for Peace is an ecumenical nonprofit dedicated to creating art to promote peace and is located at 2599 Harvard, Berkley 48072. Cancer Survivorship Exercise & Wellness: Thursday, February 6th, 7pm FIELD TRIP!! The Beaumont Cancer Survivorship program is designed by physical therapists that specialize in cancer. They offer a supervised exercise program, individual wellness plan and more. Join us to learn all the program has to offer along with some basic safe, easy, arm exercises that can be done post breast surgery! Cynthia Tan, PT and lymphedema specialist will be there teaching us. We will meet at the Beaumont Health Center 4949 Coolidge Highway Royal Oak. Please call to register at 248-551-8585. Angel Pillow Project Sewing Night!: Thursday, February 13th, 7pm Royal Oak Beaumont In honor of Valentine’s Day come make a heart shaped pillow for a woman who is recovering from breast cancer! The Angel Pillow Project was created in an effort to bring support and comfort to newly diagnosed breast cancer patients. The pillows are used to soothe both physical and emotional pain immediately after surgery. Breast Cancer is hard to face; these pillows let women know they are not alone! Each pillow includes a pretty handwritten note of encouragement from a survivor. We will provide sewing machines, material, batting, scissors, ribbon and card supplies, but donations of these items are also appreciated! If you would like to participate and do not sew, please come anyway, as there will be plenty that you can do! Please rsvp so we know how many machines to bring. Please call to register at 248-551-8585. Meets in the Rose Cancer Center 1st floor classroom in Royal Oak. Coffee (Hot Cocoa?), Chocolate & Chat - Newly Diagnosed Meeting: Tuesday, February 25th, at 7pm Royal Oak Beaumont There is no “How-To guide” when dealing with breast cancer. There are always so many questions to ask, and at times we all feel we don’t even know what to ask! This is a low key evening to discuss the emotional roller coaster ride receiving a breast cancer diagnosis can bring. If you have been diagnosed with breast cancer in the last year and would like to meet others who share the same experience, please join us in the Rose Cancer Center first floor classroom in Royal Oak. Psychologist, OCN, APRN, Dr. Debra Luria will be helping us navigate the roller coaster. Please call to register at 248-551-8585. Neuropathy after Breast Cancer Treatment: Thursday, March 6th, at 7pm Troy Beaumont Neuropathy is the unspoken side effect that many women endure after chemo therapy. It’s difficult to know where to turn to learn more about that numbness and tingling in your fingers or toes. Join us to learn more from medical oncologist Dr. Laura Nadeau. We will be meeting in the Troy atrium classrooms, which are located on the East side of Dequindre across from Troy Beaumont. Enter through the middle entrance (atrium), walk past the information desk and the classroom will be down a short hallway on your left behind the Sterling Café. Please call to register 248-551-8585. Genetics with Jen: Thursday, March 13th, at 7pm Royal Oak Beaumont Ever wonder what the difference is between genetically inherited breast cancer and familial breast cancer? Or if breast cancer and other cancers (prostate, pancreas, ovarian) in a family might somehow be related? This evening Jennifer Fulbright, one of Beaumont’s Certified Genetic Counselors, will be discussing genetics and cancer. Get a full update on what’s new in the world of cancer genetics along with answering your questions. Meets in the Rose Cancer Center 1st floor classroom in Royal Oak. Please call to register at 248-551-8585 5


The U.S. Preventive Services Task Force is a group of experts that makes recommendations to the U.S. Department of Health and Human Services on policies to prevent diseases. They have recommended that women with a high risk of breast cancer but who haven’t been diagnosed be offered medicines that can lower that risk. “Medications for Risk Reduction of Primary Breast Cancer in Women: U.S. Preventive Services Task Force Recommendation Statement.” was published on On Sept. 24, 2013, at breastcancer.org. The task force reviewed many studies on medicines to reduce breast cancer risk to develop its recommendation statement. The recommendations suggest that doctors should offer the medicines tamoxifen and Evista (chemical name: raloxifene) to women aged 35 and older with a high risk of breast cancer who have never been diagnosed to reduce their risk. The task force didn’t recommend that women at average or low risk of breast cancer be offered these medicines. Both Evista and tamoxifen are SERMs (selective estrogen receptor modulators). SERMs block the action of estrogen in breast and certain other cells by sitting in the cells’ estrogen receptors. SERMs don’t affect all estrogen receptors the same way because they’re selective (as the name says). In bone cells, SERMs interact with the receptors the way estrogen does and strengthen bones. In breast cells, SERMs block the receptors’ interaction with estrogen and limit cell growth. Tamoxifen and Evista are pills taken by mouth. In July 2013, the American Society of Clinical Oncology (ASCO) released new guidelines on using hormonal therapy medicines to reduce risk on postmenopausal women with higher-than-average risk. Besides tamoxifen and Evista, the ASCO guidelines recommend that doctors talk to high-risk postmenopausal women about using the aromatase inhibitor Aromasin (chemical name: exemestane) to reduce risk. Aromasin works by stopping the body from producing estrogen, which limits the amount of estrogen available to stimulate hormone-receptor-positive breast cancer cells to grow. The hormonal therapy medicines don’t lower the risk of hormone-receptor-negative breast cancer. Tamoxifen, Evista, and Aromasin all may cause side effects, some of them severe. Hot flashes and night sweats are side effects of all three medicines, though they’re more common with tamoxifen and Evista. Joint pain is a more common side effect of Aromasin. Aromasin also may weaken bones and make women more likely to break a bone. All three medicines can sometimes cause dangerous blood clots in rare cases. This complication is more common with tamoxifen and Evista. Studies show the effectiveness of these medicines, but other research has found that they’re not widely prescribed by doctors or taken by women at high risk of breast cancer because of concerns about side effects. If you have a higher-than-average risk of breast cancer, it makes sense to do everything you can to keep your risk as low as it can be. There are lifestyle choices you can make, including: • maintaining a healthy weight • exercising regularly at the highest intensity possible • limiting or avoiding alcohol • limiting processed foods and foods high in sugar • eating healthy, nutrient-dense food • not smoking You and your doctor also may be considering medicine to reduce your risk. Talk to your doctor about your preferences as well as the risks and benefits of each medicine.

Chemo Tip...

“If you experience a metallic taste while eating, try switching your utensils to plastic wear to minimize this side effect.” Rosa, Oncology Nurse Navigator at WCRC 6


g & Caring n i r a h Profi S le I was diagnosed with breast cancer in November of 2011, and received a heart- shaped pillow in the hospital after my double mastectomy. The surgery was very difficult. I was afraid, disappointed and scared. Many people were coming and going, offering local resources and information. In the midst of all of this, I was given a pillow sewn by Lorraine Stevens, whose daughter had breast cancer. I was so touched by the gesture. It was such a wonderful and practical gift, and it really lifted my spirits. With pain pumps, drainage tubes, surgery incisions and bandages, finding a comfortable position was extremely challenging. The nurses suggested rolling up towels to provide cushion and support, but the heart pillow was the perfect solution. It provided much needed padding and so much comfort to me in the weeks following my surgery. The pillow truly improved my recovery and was invaluable as I healed from my breast cancer treatments.

Sabrina Mayhew

I continue to use my pillow today. It helps me get a more restful sleep at night, and I even take it with me when I travel. It’s been by my side and helped me through some really rough times. If fact, the pillow helped me so much during my recovery that I wanted to share it with others. My initial reaction to learning that I had cancer was that of deep sorrow and grief. Over time, however, I began to see my cancer as more of a turning point in my life. Change is never easy, but I began to learn that my struggles and pain would help me grow and become much stronger. I began searching for ways to turn the negative into something positive. I got involved with breast cancer advocacy groups and had the opportunity to meet some incredible survivors who were passionate about making a difference in the fight against cancer. I shared their passion, and was even more inspired to find ways I could contribute. My hope is that the Angel Pillow Project will connect breast cancer survivors together in a unique way, so that they can support one another through the cancer journey, and beyond. When you get a chance, visit my Angel Pillow Project web site to learn more www.angelpillow.org

SAVE THE DATE !!

nual n A 15th

Sharing & Car ing B sium o p reast C ancer Sym Saturday, May 3rd, 2014 The Village Club, Bloomfield Hills

Shhhhhh...we can’t give you any of the details just yet, but we know it’ll be worth waiting for! 7


Programs and Ev l a n o ents iti of Interest... Add Look Good Feel Better: This program is presented in conjunction with the American Cancer Society to help

women who are currently undergoing cancer treatment to improve their appearance and self image by teaching them hands-on beauty techniques to overcome the appearance-related side effects of cancer treatments. We will also learn how to tie head scarves, get tips on choosing the right wig, and even bring home a beautiful kit filled with new makeup. Reservations for LGFB for both Troy (10 am meeting time) and Royal Oak (6 pm meeting time) must be made by calling the American Cancer Society at 1-800-227-2345. Meeting dates are Mondays: January 13th, February 10th and March 10th.

Silver Linings, Winter 2014: Silver Linings teaches meditation, gentle yoga, mindful eating, and mindful

communication skills to women who have completed cancer treatment. The Information/Registration dates for the Winter Silver Linings class will be Tuesday, January 7 OR Tuesday January 14, 2014 at 6:30 pm in the Yoga Room, Employee Fitness Center. For more information about the program, please call Pam Jablonski at 248-551-4645, or email pjablonski@beaumont.edu.

Southeast Michigan YSC Face 2 Face Networking Group

This peer led networking group is designed for women diagnosed with breast cancer in their 40’s or younger, regardless of your current age. Whether you have just been diagnosed, are still undergoing treatments or are several years out, join us to connect with other young women who have faced breast cancer. In this laid back setting, you can connect with other survivors, find out about available resources, ask questions, make new friends and be assured that you are not alone. For more information call 313-515-8854 or email katrinastudventum@gmail.com REACH TO RECOVERY For more than 40 years, the American Cancer Society’s Reach to Recovery program has helped people (female and male) cope with their breast cancer experience. This experience begins when someone is faced with the possibility of a breast cancer diagnosis and continues throughout the entire period that breast cancer remains a personal concern. Talking with a specially trained Reach to Recovery volunteer at this time can give a measure of comfort and an opportunity for emotional grounding and informed decisionmaking. Volunteers are breast cancer survivors who give patients and family members an opportunity to express feelings, talk about fears and concerns, and ask questions of someone who is knowledgeable and level-headed. Most importantly, Reach to Recovery volunteers offer understanding, support, and hope because they themselves have survived breast cancer and gone on to live normal, productive lives. Volunteers are trained to give support and up-to-date information. To be a volunteer for Reach for Recover, or have a phone or personal visit by a volunteer, please call 800-227-2345.

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The information in this newsletter is not intended as a replacement for medical care. The advice of your physician should take precedence in your health care matters.


Sharing with Friends - Winter 2014