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Sharing Autumn 2011

with Friends

A NEWSLETTER FOR BREAST CANCER SURVIVORS

News About Breast Cancer NEW TREATMENT FOR LATE STAGE DISEASE Beaumont Cancer Center

3577 W. Thirteen Mile Royal Oak, MI 48067-6710 248-551-8585 Speaker’s Schedule 248-551-8588

In This Issue: ♥ Our Cover Story: Treatment for late stage disease ♥ Ask the Expert: Larry Norton, MD ♥ S & C Profile: Eileen Kastura ♥ Calendar of Events

You can make a difference

Sharing & Caring is a non-profit organization devoted to the education and support of breast cancer survivors. Your donation will support programs for others who follow in your footsteps. Please make your check payable to Sharing & Caring at the above address. Please call or email us at sharingandcaring@beaumont.edu if you wish to be removed from our mailing list.

The U.S. Food and Drug Administration approved Halaven (eribulin mesylate) to treat patients with metastatic breast cancer who have received at least two prior chemotherapy regimens for late-stage disease. Metastatic breast cancer refers to cancer that has spread to distant sites in the body. Treatment of metastatic breast cancer often includes chemotherapy, but options can become limited when the cancer stops responding to conventional chemotherapy regimens. Halaven is a synthetic form of a chemotherapeutically active compound derived from the sea sponge Halichondria okadai. This injectable therapy is a microtubule inhibitor, believed to work by inhibiting cancer cell growth. Before receiving Halaven, patients should have received prior anthracycline-and taxanebased chemotherapy for early or late-stage breast cancer.

regimens for late-stage disease. The study was designed to measure the length of time from when this treatment started until a patient's death (overall survival). The median overall survival for patients receiving Halaven was 13.1 months compared with 10.6 months for those who received a single agent therapy. The results of this study suggest that Halaven can extend life among women with advanced, heavily pretreated breast cancer. “There are limited treatment options for women with aggressive forms of late-stage breast cancer who have already received other therapies,” said Richard Pazdur, M.D., director of the Office of Oncology Drug Products in the FDA’s Center for Drug Evaluation and Research. "Halaven shows a clear survival benefit and is an important new option for women."

Other FDA-approved therapies used to treat late-stage, refractory breast cancer include Xeloda (capecitabine) for patients with The EMBRACE study is a Phase III clinical breast cancer resistant to paclitaxel and trial that contributed to approval of Halaven. anthracycline-containing chemotherapy; Study participants were randomly assigned Ixempra (ixabepilone) for patients with to receive either Halaven or “treatment late-stage disease after failure of an of physician’s choice”. Because there anthracycline, taxane and Xeloda; and is no single standard treatment regimen Ixempra plus Xeloda for patients with latefor women at this stage of breast cancer, stage disease after failure of anthracycline treatment of women in the comparison and taxane-based chemotherapy. group was left up to the patient’s physician. Reprinted from the FDA.gov and Halaven’s safety and effectiveness were ww5.komen.org Results of the EMBRACE established in a single study in 762 women study were publish in The Lancet, 3/3/2011 with metastatic breast cancer who had received at least two prior chemotherapy


Greetings from

Lorelei

Fall is in full swing, and the chilly weather has arrived. While most of us have no problem feeling the chill in the air, those with peripheral neuropathy may. Neuropathy can be an unwelcome side effect from chemotherapy and can be transient but still a challenge to manage. We welcome medical oncologist Dr. Laura Nadeau on October 6th at 7pm at Troy Beaumont to enlighten us on what exactly neuropathy is and how to prevent/manage it. This year, S&C has started a new support group for women with metastatic breast cancer. Personally, I have become very fond of these ladies. They are living their lives to the fullest (something we should all be doing!) and managing medical challenges as they arise. Unfortunatley, the breast cancer community tends to keep these ladies at an arms’ distance, and the focus is on “curable” breast cancer in October. With this being said, I am happy to invite ALL OF YOU to a celebration of life and awareness on October 13, Metastatic Breast Cancer Awareness Day. We will have several wonderful speakers: Dr. Nayana Dekhne Director of the Comprehensive Breast Clinic, Jennifer Martens, R.N. Oncology Nurse manager, Debra Luria Ph.D, A.P.R.N, Clinical Psychologist and survivor and my dear friend Eileen Kastura, a three year metastatic survivor. We will meet in the lovely Salisbury Garden at Royal Oak Beaumont at 3pm for tea (light snacks) and talk! Please RSVP, so we can be assured to have enough food and drink available for the celebration. “Living Downstream…Walking Upstream” A Movie Night brought to us by the Michigan Breast Cancer Coalition. This powerful documentary revolves around Sandra Steingraber, Ph.D when she receives a cancer diagnosis. She then begins to research and uncover some of the possible enviormental causes of cancer. Sandra’s personal story about her cancer journey and her discoveries is a night not to be missed! This movie viewing will be held at the PNC Bank Building in Troy. Volunteers are a big part of what makes S&C successful. Please join us for a volunteer appreciation night December 8th! If you have volunteered for us or are interested in volunteering come join us the night for a light meal, friendship, sharing and a big thank you from us! Have a wonderful Fall and Holiday Season! warm regards, Lorelei

Sharing & Caring is a non-profit organization dedicated to confronting breast cancer with knowledge , support and hope. Our programs are run entirely on contributions from people like you. We are proud to provide quality programs at no charge. Please consider a gift to S&C in honor of someone special or in support of your favorite Sharing & Caring program. All contributions are tax deductible. Thank you for sharing and thank you for caring.


Ask the Expert Our Expert:

Larry Norton, MD

Medical Director, Evelyn H. Lauder Breast Center Memorial Sloan-Kettering Cancer Center

Marissa Weiss, MD

President, www.breastcancer.org

Often women with Stage IV breast cancer feel like outsiders. Attention and focus is given to women whose breast cancer is "curable." Are there any initiatives underway across the U.S. to bring more attention to women who are living with breast cancer day in and day out? Dr. Norton: The comment is absolutely right. A lot of the communication and resources are focused on patients with primary breast cancer rather than recurrent breast cancer. However, there are efforts to correct that. One of the major changes in metastatic breast cancer over the years is conversion from an acute fatal disease to a chronic one that people can live with. I have people with metastatic breast cancer that I've cared for for 25 years. I expect that we're going to see more and more people with long survival with this disease, which is always a prelude towards disease cure. I suspect we're in that transition now. Dr. Weiss: New therapies for breast cancer are usually first introduced in clinical trials for women with metastatic disease, so women with metastatic disease truly are pioneers for new treatments and approaches in the future. I have mets to my liver and bones, and because most of the time I look great, people assume I am great when really I feel like crap and am tired. When they say, "Wow, you look so normal," it is so hard to not break down and cry and yell at them. What can I do? Dr. Norton: Basically, you need somebody to talk to about your own individual psychological situation and relationship to this illness. Many people need some individual counseling - not because you're ill or you're doing things wrong, but to gain coping skills so psychologically you can do as well as you seem to be doing physically. Dr. Weiss: Often people will take their cue from you. So if you are looking glamorous, strong, and courageous, people will want to assume that you are everything that you seem plus more. Dealing with expectations — your own, as well as others’ — is one of the challenges of living with metastatic breast cancer. Ideas from a therapist can be quite helpful in this situation. It seems to me that women with Stage IV cancer on clinical trials face a great deal of uncertainty regarding effectiveness of their treatment. Are there particular/specific ways of helping these women cope with day-today living on clinical trials? Dr. Norton: Uncertainty is part of life and if you have a serious disease, that uncertainty is heightened. Being on a clinical trial in many ways reduces that uncertainty since the schedule of testing for the status of the disease is determined by experts and adhered to carefully. It is very important when one has a serious disease to do everything possible to do well with that disease, including establishing a relationship with a doctor or nurse with whom you have a great deal of trust. When you are doing everything you can to do well, then you should turn your attention to living as full a life as possible. It is a mistake to become a professional patient. Your illness is only one part of your life; the other parts of your life also deserve your attention and respect. Make decisions and go on with your life. Enjoy the people that you love. And that's the best way to reduce fear. Dr. Weiss: Dr. Norton taught me a long time ago that there's only one of each of you, and each person deserves to be hopeful and believe that you can do well. As a physicians in practice for more than 20 years, we have both learned that the patients who may seem to have the worst prognosis can beat out the odds and show us that they too have a chance of beating the statistics and living well. There are patients I took care of 15 years ago who I was sure would never make it who are still writing me Christmas cards. Dr. Norton: I have noticed over the many decades I've done this that expecting to do well often leads to doing well. Visualizing a happy future often leads to a happy future. The only way you can guarantee that you're going to do poorly is to stop fighting. Reprinted from breastcancer.org


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.

October, November & December Support Groups: Breast Cancer Support Groups: Come join us to meet other ladies who are recently diagnosed or longtime survivors who have had similar experiences. These groups provide an opportunity for women to discuss the unique challenges facing them as breast cancer survivors. Feel free to participate and share your story or just listen and perhaps make a new friend. The sessions are led by a psychologist, social worker, or nurse practitioner.

Royal Oak Beaumont Groups meet in the Cancer Center 1st Floor Classroom Monday, October 10th at 2:00 pm. Monday, November 14th at 2:00 pm. Thursday, December 1st at 7:00 pm. Monday, December 12th at 2:00 pm. Troy Beaumont Groups meet in the Wilson Cancer Resource Center, across the bridge from the Hospital Monday, October 17th, at 10:30 am Monday, November 21st at 10:30 am.

Metastatic Breast Cancer Support Group: This very specific group is designed to meet the needs of ladies who have advanced or metastatic breast cancer. Often women with stage four breast cancer feel unable to talk about the unique challenges they face and this format provides a safe arena to discuss what is on your mind. Please join us if you have been diagnosed with metastasis, or a recurrence of breast cancer. This group meets in the Royal Oak Cancer Center 2nd Floor Administrative Conference Room, in Suite 210. Tuesday, November 1st, 7:00 pm. Facilitated by Debra Luria, Ph.D, A.P.R.N. of Psychological Institute of Michigan. 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, and get tips on choosing the right wig. Please call 248-964-3430 for reservations at Troy, or 248-551-8585 for reservations at Royal Oak. Program meets at 10:00 am at the Troy Beaumont Wilson Cancer Resource Center and at 6:00 pm at the Royal Oak Beaumont 1st Floor Cancer Center Classroom. Meeting dates are Mondays: October 10th, November 14th and December 12th.


Other Offerings This Quarter - October, November, December “My Fingers are Tingling, is this Neuropathy?”: Thursday, October 6th, 7:00 pm Troy Beaumont What is neuropathy, anyway? Please join us as Dr. Laura Nadeau, medical oncologist, discusses neuropathy, what it is, how it can be prevented, why it happens and how to manage it. We will meet in the Atrium classroom (next to the Sterling Cafe) of the Beaumont Professional Building on the East side of Dequindre. (across the bridge from Troy Beaumont Hospital. Please park in the professional building parking lot.) Metastatic Breast Cancer Awareness Day Tea: Thursday, October 13th, 3:00 - 5:00 pm Royal Oak Beaumont During the month of October, pink ribbons are everywhere, promoting a cure for breast cancer. Unfortunately, for the 155,000 survivors living with metastatic breast cancer, cure is not always an option. These women and men long for their voices to be heard, to increase research funding to find new therapies to extend their lives. Please join us in embracing these survivors! Dr. Nayana Dekhne, Director of Beaumont’s Breast Care Center, Debra Luria, Ph.D, Psychologist, Jennifer Martens, RN, along with Eileen Kastura, 3 year metastatic breast cancer survivor, will host this special recognition tea. Enjoy tea/coffee, cookies, cake and fruit at this inspirational gathering. We will meet in the Debra Saber Salisbury Memorial Garden, located on the 6th floor of the South Hospital. Take the “golden” elevators up from the South Lobby. Please RSVP!! Prevention and Management of Lymphedema: Thursday, October 13th, 7:00 pm Royal Oak Beaumont and again on Thursday, November 17th, 7:00 pm Troy Beaumont Presented by Dr. Justin Riutta, Director of the Beaumont Lymphedema Clinic. Discussion of risk factors, prevention and management of lymphedema. Bring your questions! This class will meet in the Cancer Center 1st Floor Classroom in Royal Oak, and the classroom adjacent to the atrium (Sterling Cafe) in Troy. Healthy Products for Healthy Skin!: Thursday, October 27th, 7:00 pm Royal Oak Beaumont Our skin is the largest organ of our body. It is important to treat it with the best, natural products available. Being a cancer survivor, you may have noticed changes in your skin occurring during treatment and even long into survivorship. Julie Ward, Clinical Oncology Estheetician, will provide a presentation on organic skin care facials and products. Julie, on staff at Beaumont Integrative Medicine, will help us manage some of the most common skin changes caused by cancer treatment, such as dryness and sensitivity. We will meet in the Royal Oak Cancer Center 1st floor classroom. Mindful-Awareness Stress Reduction: Thursdays, November 3rd & 10th, 6:00 pm Royal Oak Beaumont This series is taught by clinical humanistic psychologist, Donna Rockwell, Psy.D, of the Michigan School of Professional Psychology. Dr. Rockwell will outline the components of mindfulness as a tool for stress reduction, a scientifically proven method. Mindfulness helps train the mind to slow down and heighten focused attention, which leads to clearer thinking, greater interpersonal connections and genuine selfacceptance. Learning to cultivate these “wisdom skills” can lower the production of the stress hormone cortisol while enhancing health and wellness. SEATING IS LIMITED, be sure to RSVP! Meets in the Royal Oak Cancer Center 1st floor classroom. Movie Night! “Living Downstream...Walking Upstream” by Sandra Steingraber, Ph.D: Wednesday, November 9th, 7:00 pm This poetic film follows Sandra during one pivotal year as she travels across North America, working to break the silence about cancer and its environmental links. This is a can’t-miss evening with Maria Lyzen, RN, MPH, who will lead a discussion about the film after we view it. We will meet at the PNC (Top of Troy) Building, 755 W. Big Beaver Road, in the 2nd floor classroom. Please RSVP, as space is limited and we expect a large audience. For more information about this evening, please see page 8. Volunteer Appreciation Night!: Thursday, December 8th, 6:00 pm Royal Oak Beaumont Calling all of our wonderful volunteers, past, present and future! Please join us for this special evening to greet old friends and meet new ones over a light dinner and dessert. We’ll talk about volunteer opportunities for the coming year and find out how you might like to help. Please call to RSVP, and THANK YOU for another great year! We will meet in the Royal Oak Cancer Center 1st floor classroom.


faces of S e h T harin g & Caring Greetings, The position of Program Assistant for Sharing & Caring was designed to help you. I am generally the first voice you hear when calling our office. Whatever the reason for your call, I am always so glad to hear from you, and will try to help in any way I can.

Linda Lintner

Another way to communicate with Sharing & Caring is by e-mail. Our address is sharingandcaring@beaumont.edu. Won’t you take a moment to e-mail us so that we have your e-mail address and can send the newsletter to you electronically? If you change your mind and decide you prefer “snail mail”, that’s ok - just let us know. To those of you who have already furnished us with your e-mail address, we thank you. Many e-mails have been coming back to us as “undeliverable” or “blocked”. In some cases it might be that your spam catcher is being a bit “over-protective”. If we find we can’t get the newsletter to you by e-mail, we will continue sending it to you through the post office. Please remember to let us know about changes to your e-mail address and postal mailing address. I have been blessed to meet many of you during my two years with Sharing and Caring and hope to see more of you at our support groups and Knowledge Night programs. Think about joining us at the Sharing & Caring Volunteer Appreciation Night on Thursday, December 8th. The evening is both a thank you to the wonderful ladies who have helped us in the past and a welcome to anyone who might want to help in the future. We will enjoy a light dinner while discussing volunteer opportunities. Would love to see you there. OOO’s Linda

I know that many of you have met Lorelei, or spoken with Linda, but I’m sure that most of you probably don’t know me. I have been part of Sharing & Caring from the very start. Any Jeanne Seitz time you’ve seen this newsletter, noticed a flyer, or opened an invitation to a Sharing & Caring event, you’ve “met” me. I’m the behindthe-scenes person responsible for all of the printed material that Sharing & Caring needs. I began working for Dr. John Ingold, Founder of Sharing & Caring in 1998. It was from his office, in 1999, that Sharing & Caring was launched. For nearly two years, it was run from the office, and all of the staff had a part in it. However, it soon became apparent that Sharing & Caring was growing so quickly, that it needed to become its own entity if it were to continue to fulfill its commitment to confront breast cancer with knowledge, support and hope. Maryl Balgenorth came on board as Executive Director, and Rose Daniels came along shortly thereafter. These two dedicated women became Sharing & Caring and except for assisting with the annual symposia, I wasn’t very involved with Sharing & Caring. In early 2001, I decided to leave my job at the Beaumont Breast Care Center. As luck would have it, Sharing & Caring had grown so much that they needed a 3rd person to help and I was thrilled to be offered a position with the group. Over time, my responsibilities evolved from special events coordinator, to graphic designer. I work from home now, and don’t get to meet as many of you as I used to, and that is the only part of my job that I don’t like. It is SUCH an honor for me to be a part of this group of strong, caring, wise women. I particularly enjoy our special events, as those are the times that I get to meet many of you, and hear your stories. Please look for me at this year’s Symposium on October 1st, and come introduce yourself if I haven’t already met you. The people of Sharing & Caring are what makes my job so rewarding. Warm regards, Jeanne


g&C n i r a arin Sh

Three years ago in July 2008 I laid down on my bed thinking about my daughter starting her senior year of high school and what changes would occur within the next 12 months. I had no idea just how many changes there would be and how my life would be transformed. That night I noticed, shall we say, that my left breast was acting more like a 23 year old breast and not a 43 year old breast, as it did not “flop” as the right one did. Upon examination I found my lump (lovingly referred to as Lovttie). Well you all know the story of the next three weeks…test, test, and how about another test. August 11, 2008, I was diagnosed stage III, triple negative, BRCA1 positive breast cancer.

August 30, 2008 - my 44th birthday. Thoughts for the day… Will I see my daughter graduate? Will I see a 45th birthday? Will I see my youngest daughter start her senior year? Reflection on the past year…Why didn’t I make that trip? Why didn’t I attend that gathering? Why did I work two jobs and so many hours? Why didn’t I slow down? Will I see another birthday?

g Profile

Eileen Kastura

August 30, 2009 - my 45th birthday. Thought for the day…So happy I saw my daughter graduate. So grateful for the love and support of my husband, family, friends, and new Beaumont associates. So excited to take daughter off to college!! Reflection on the past year… Can’t believe I made it through 20 week of chemo. I don’t look half bad bald if I do say so myself. I survived port surgery, double mastectomy, implants, radiation, oophorectomy and a revision. WOW what a year. September 8, 2009…It’s back!! Yes, back! Metastasis to my right lymph nodes and dermis. Stage IV. Will I see another birthday? August 30, 2010 - my 46th birthday. Thought for the day…Youngest daughter is starting her senior year, will I see her graduate? I have now lost my hair three times…still looking good. Husband still continues to provide daily doses of love and understanding. Reflection on the past year…I am so lucky that through programs and seminars I come to meet the most amazing, beautiful and inspiring women. They have changed my outlook, opened my eyes and filled my heart with love, hope and determination to march forward. I have now had over 30 chemo treatments and not sure if they will ever end. Still smiling and enjoying each day I am given. Will I see another birthday? TODAY is August 30, 2011 my 47th birthday. CELEBRATE!! Yes the gift of another birthday has been given to me and I am enjoying every single moment. I am sharing it with my family and friends. But today I also share it with all the women who have walked this path before me, those who walk with me and those yet to travel. I celebrate you all. Thought for the day... I will have another birthday. I love the word remission. I love seeing my youngest graduate and head off to college. I love being involved in local and national organizations. Reflection on the past year…I had the honor of carrying a flag in the survivor circle at the 3Day. I finished 52 chemo treatments. I have my hair back, but to be honest the morning was much easier without it. I am making a difference in the world. I have found my passion. My passion is changing this disease through clinical trials, through lobbying efforts on “The Hill” and through giving encouragement to those newly diagnosed. I am the face of metastatic disease and I matter. I have made lemonade out of this lemon and I am enjoying every sip! I will have another birthday!

Make sure you save the date for the inspirational tea honoring those of you living with metastatic disease. Thursday, October 13th from 3:00 - 5:00 pm. Details on page 5!


breast cancer fronting with n o C know ope... ledge, support and h

6th Annual Beaumont Breast Health Fairs: Royal Oak: Tuesday, October 11th, 10:30am - 1:30pm in the Suite 100 Hallway, 1st floor, South Hospital. Troy: Tuesday, October 18th, 10:30am - 1:30 pm in the 2nd Floor Atrium, Main Hospital. Great information on breast cancer treatment, cancer genetics, lymphedema, diet and more! Come shop the Boutique Pink for unique breast cancer awareness jewelry, cards, art and clothing. Girl’s Night Out - An Evening in Paris: Thursday, October 20, 6:00 - 9:00 pm at the Grosse Pointe Yacht Club, 788 Lake Shore Road, Grosse Pointe Shores. Gather your friends for a fun night of French treats, can-can dancing, pampering, health screenings and more. Learn the latest in breast health and stress reduction while boutique shoopping and consulting Beaumont experts. $10 per person, advance sales only. for more information, or to register by phone, please call 800-633-7377, or online at www.beaumont.edu/spirit-of-women Silver Linings: Silver Linings teaches meditation (Mindfulness Based Stress Reduction), gentle yoga, mindful eating and mindful communication skills to women who have completed breast cancer treatment. Research shows that the program improves quality of life and post-cancer symptoms. Facilitated by Dr. Ruth Lerman. Mandatory registration and informational meeting for autumn session workshops is scheduled for Thursday, November 3rd at 6:30 pm in the 3rd Floor Cancer Center “lobby”. Autumn workshop dates are Thursdays starting November 10th through December 15th at 6:30 pm. (no workshop on November 24th). Silver Linings Retreat will be held on Sunday, December 11th, from 8:30am - 1:00pm. For more information, please contact Pam at pjablonski@ beaumonthospitals.com or call her at 248-551-4645. Movie Night! “Living Downstream...Walking Upstream” by Sandra Steingraber, Ph.D Wednesday, November 9th, 7:00 pm PNC (Top of Troy)Building, 755 W. Big Beaver Road, Troy. (located between Livernois and Crooks) Please join us for this special evening! This poetic film follows Sandra during one pivotal year, as she travels across North America, working to break the silence about cancer and its environmental links. After a routine cancer screening, Sandra receives some worrying results and is thrust into a period of medical uncertainty. Thus, we begin two journeys with Sandra: her private struggle with cancer and her public quest to bring attention to the urgent human rights issue of cancer preventioin. But Sandra is not the only one who is on a journey - chemicals against which she is fighting are also on the move. We follow these invisible toxins as they migrate to some of the most beautiful places in North America. We see how these chemicals enter our bodies and how, once inside, scientists believe they may be working to cause cancer. This is a “can’t miss” evening. Maria Lyzen, RN, MPH will be with us to lead a discusion after viewing the film. Please call at 248-551-8585 to RSVP, as space is limited. New Cancer Survivorship Exercise and Wellness Program at Beaumont Troy! The Cancer Survivorship Exercise & Wellness Program promotes fun, fitness, function and friendship for people during and after cancer treatment. It is run by Physical Therapists who will work with you to create an individualized wellness & exercise program. To get started, call 248-964-0700 to be scheduled for a free “Fitness” Screen.


Royal Oak Campus October 11, 2011 10:30 am - 1:30 pm Suite 100 Hallway South Hospital First Floor ď‚Š Troy Campus October 18, 2011 10:30 am - 1:30 pm Main Hospital, 2nd floor Atrium We are pleased to once again host the Lilly Oncology on Canvas art exhibit, which honors the journey of those whose lives have been affected by cancer. We hope that the art provides hope and inspiration to all who view it!

Featuring Information On Sharing & Caring Breast Cancer Education and Support Programs, Breast Cancer Treatment, Cancer Genetics, Lymphedema, Diet and much more!

Don’t miss Boutique Pink ! Promote breast cancer awareness and help fund education and support services. We will have beautiful jewelry, art, cards and more available for purchase from several area shops and artists. A portion of all proceeds will be donated to Sharing & Caring. For more information, please call 248-551-8585

Sharing with Friends - Fall 2011  

A newsletter for breast cancer survivors

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