"In My Words All About Me"
September 2006 a message from Beth W hat a wonderful gift I received on my 50th birthday! My husband, Jess, knew me all too well During a breast – nothing could have thrilled me self-exam, I found more than to receive a gift that a lump in my left breast. provides education and resources to After two fine needle women diagnosed with breast cancer biopsies, the results at an early age: The Beth Sanders Moore Young Breast Cancer Survivors’ Program at M. D. Anderson. were negative. My own diagnosis of breast cancer came at the prime However, I decided it of life. I was in my mid forties. Because of my mom’s should be removed breast cancer diagnosis 20 years earlier and my anyway. The surgeon previous work with breast cancer organizations, I was astonished – thought I was thoroughly educated about the disease and treatment options. I quickly learned I was not. due to my age. I had After diagnosis and subsequent treatment came just turned 27 years survivorship, which brought unexpected challenges. old and had no family Anxiety, depression, fatigue, loneliness, stress, history of breast cancer. sexual dysfunction, weight gain … weight loss … weight I selected gain, nutritional imbalance, early menopause, loss of fertility, loss of bone density, career slow down, parent- M. D. Anderson for ing limitations…. are not quite what’s expected over the rainbow. Even after triumph over disease, young survi- vors of breast cancer face these and other challenges In My Words further surgery and treatment. The first step was to have my that are over-whelming. However, there is a roadmap back to an enriched life. All About Me lymph nodes removed, The Young Breast Cancer Survivors’ Program and one node was by Kendra Kirsch positive. In August of addresses the unique needs of young survivors (age 45 and younger) and educates health care providers about 1998, I started my first round of chemotherapy followed them. Under the direction of Karin Hahn, M. D., the by six weeks of radiation. I did not know anyone with program is supported by a medical advisory board and breast cancer at the time. I had no idea how breast cancer numerous departments at M. D. Anderson. It is home to a matrix of health care professionals who collaborate to patients behaved, so I just made it up as I went along. I provide information on every topic touching a young remember asking my oncologist if chemotherapy would survivor. Through its website, brochures, newsletters, make me real sick. He answered, “only if you are highly workshops and symposia, the program provides current emotional.” I decided not to be highly emotional. I found a information about how to maneuver the road blocks. cute wig and learned to like my bald head. I didn’t miss work, As October grows near and we celebrate National Breast Cancer Awareness Month, join me in sharing continued with life, took a ski trip during chemo, and went to the gift I received. Connect the survivors in your life — New York to celebrate before my last chemo treatment. particularly the young — with the tools they can utilize continued to realize the highest quality of life possible. Spread the news that there is now at M. D. Anderson, the nation’s first comprehensive educational and research program The Beth Sanders Moore Young Breast Cancer Survivors’ Program for young breast cancer survivors … providing the path to navigate life after breast cancer. Our mission is to address the educational needs of young breast cancer survivors, their health care providers, and the public. Read More about Beth, her story, and the program by The program aims to foster collaborative research addressing issues of logging onto www.mdanderson.org/youngbreastsurvivor interest to young breast cancer survivors and their health care providers. Young Survival Coalition By Kristi Whiteside, Houston Affiliate President The Young Survival Coalition is the only newly diagnosed patients with international network of breast practical information on breast cancer cancer survivors and support- and local resources specific to young ers dedicated to the critical women. In addition, the kits include concerns and issues unique a hand-made blanket made by fellow to young women with young survivors. The kits are distributed breast cancer. Through to patients early in their treatment, action, advocacy and when their need for information and awareness, the YSC resources is greatest. seeks to educate and influence the medical, research, breast cancer and legislative communi- ties to address breast cancer in women 40 and under, and to serve as a point of contact for young women living with breast cancer. Beginning this summer, the Houston Chapter of the YSC is providing Newly-Diagnosed Resource Kits to M. D. Anderson patients who are diagnosed with breast cancer at 40 or under. The kits are designed to provide Houston YSC President Kristi Whiteside, an associate attorney at Jones Day, speaks to young women at a recent event. In 2003, my fifth anniversary visit, we found metastatic disease in my bones. It has been a wild ride. I’ve learned a whole new vocabulary: Tamoxifen, Femara®, Zoledex®, Xeloda®, Zometa®, tumor markers, pet scans and circulat- ing tumor cells. I also found new friends in the Young Survival Coalition – young women just like me with breast cancer. It’s a different world now. I am not the only one in the room with hot flashes! They know about Tamoxifen, Femara®, Xeloda®, etc. And, we are focused on reaching out to other young women who are recently diagnosed with breast cancer and let them know, they are not alone. We share information, try to make a difference and best of all ... WE LAUGH! I recently returned to college, completed my degree and accomplished a long-delayed goal. I finished my teacher certification this summer and hope to be teaching elementary school this fall. I will continue to volunteer with the Young Survival Coalition and Susan G. Komen Foundation and look forward to expanding an education outreach to high school girls throughout the Greater Houston area. I have the best support system in the world. My oncologist keeps me grounded when I become “highly emotional.” My brothers and sisters listen to me, and my parents indulge me. My nieces and nephews love me. My cats Kendra, continued from pg. 1 provide the entertainment. And my friends are truly my friends. Life is good! Beth SanderS Moore Workshop for Young Breast Cancer Survivors For the first time, a special conference addressing the issues of young breast cancer survivors will follow Anderson Network’s annual Living Fully With and Beyond Cancer Conference. The Beth Sanders Moore Workshop for Young There will be: Breast Cancer Survivors, will begin at noon • Six wellness workshops Saturday, September 9, with luncheon keynote • 28 breakout sessions on specific cancer topics speaker Leslie Mouton. • Two patient/caregiver couples sharing their experiences A news anchor and reporter at KSAT-12 in San • A medical panel focusing on the latest types Antonio, Leslie used her position to share her of cancer research journey as a young woman dealing with breast cancer to help educate other women her age to the Living Fully With and Beyond Cancer The cost for the Anderson Network’s 18th Annual importance of good breast health. Patient and Caregiver Conference entire conference Her presentation will be followed by three and workshop is $75, including all workshops, 2:30–5:00 p.m. These include “You’ve Let the activities and Lost That Lovin’ Feeling,” “Finding Freedom, Ease and Compassion for Ourselves Through Mindful- Sun Shine In meals, or $50 for Saturday only. ness” and “Healthy Eating During and After Breast September 7–9, 2006 Cancer.” Preceding this event is the 18th Annual Living For more information about the Beth Sanders Moore Program Fully Conference with the theme “Let the Sun for Young Breast Cancer Survivors, contact Anita Broxson, M.S.N., Shine In,” September 7–9. Both conferences are R.N., at (713) 792-2817, or e-mail firstname.lastname@example.org. open to all cancer patients and caregivers, regard- For more information about the Living Fully Conference, visit less of where care has been received. www.mdanderson.org/patientconference. Recent Events You Are Not Alone: An Interactive Forum for Young Survivors of Breast Cancer June 2006: The Beth Sanders Moore Young Breast Cancer Survivors’ Program and the Houston Chapter of the Young Survival Coalition (YSC) sponsored a joint educational event. Young women with a current or prior history of breast cancer and health care providers gathered for an interactive forum to view the YSC video, You Are Not Alone. Dr. Karin Hahn, breast medical oncologist, Beth Sanders Moore, breast cancer survivor and advocate, and Kristi Whiteside, president of the Houston YSC, were available for discussion following the video. The Internal Advisory Board July 2006: The Internal Advisory Board (IAB) of the Beth Sanders Moore Young Breast Cancer Survivors’ Program met to discuss future plans for the program. The IAB is a multidisciplinary team of physicians, nurses, dieticians, researchers, and patients, who share a common interest in promoting awareness, education, and research about breast cancer in young women. We are grateful to the IAB members for the dedication and guidance. What’s on Beth’s Bookshelf? The Mayo Clinic’s Guide they also address the emotional issues that tricky treatment decisions (lumpectomy develop in the setting of breast cancer. vs. mastectomy) and breast reconstruction to Women’s Cancer Many of these stories may bring a tear options (to nipple or not to nipple), (Editors: Lynn C. Hartmann, M.D. to the reader’s eye, as it did to mine. sustaining a career during chemotherapy, & Charles L. Loprinzi, M.D.) The chapter was organized in a logical marital stresses and pregnancy after An Excellent Reference fashion that encompassed a diagnostic and treatment. She is brutally honest as she (Part I: Breast Cancer) By P.K. Morrow, M.D. treatment spectrum, which proceeded from describes her feelings of anxiety and terror the prevention of breast malignancies, of dying. She mourns the loss of her breast The Breast Cancer section of the Mayo to treatment of cancer, and finally to the and her long hair in a society obsessed Clinic’s Guide to Women’s Cancer serves evaluation for recurrence of disease. with these feminine qualities. She misses as an excellent reference for women who Diagrams (which illustrated such the “old Geralyn” that she was before her are worried about the possibility of breast interventions as ultrasound-guided cancer diagnosis. cancer, women who have been diagnosed biopsies, sentinel lymph node biopsies, But throughout, Ms. Lucas fights to with breast cancer, women who are being and reconstruction techniques) further maintain a semblance of control over the treated for a breast malignancy, and improved the depth of education that this disease and her life. In an act of defiance women who have book provided. and hope, she applies bright red lipstick completed therapy. It In summary, I felt that the Breast before her mastectomy surgery so that provides an extensive Cancer section of the Mayo Clinic’s Guide her doctors will see her as a person and review of the epidemi- to Women’s Cancer presented a thorough not just “28-year old mastectomy, right ology, screening, and in-depth discussion of breast cancer, breast.” In fact, wearing lipstick becomes diagnostic strategies, and I would recommend this book for her metaphor for courage in situations treatment, and individuals who have interest in deepening where otherwise she had none. It helps her surveillance of breast their knowledge of this important disease. to find her “inner mojo” – her secret cancer. The findings strength and sexuality…something which are reported in a breast cancer cannot take away. readable manner, Why I Wore Lipstick Being a young woman with breast which is appealing to both to My Mastectomy cancer can be very isolating because health professionals and patients. by Geralyn Lucas none of your peers has any experience Reading the reference chapter provides with what you’re going through and can a thorough overview of breast cancer. A Review by Anne Kain tell you what to expect. And certainly Facts, such as the risk factors for breast When I first read Why none of the other books on breast cancer cancer, are presented in an objective I Wore Lipstick to My that I’d read before this one addressed fashion. Pertinent findings from recent Mastectomy last year, these unique issues. I appreciated the studies, such as the Women’s Health I was 35 years old and special challenges that Ms. Lucas writes Initiative (WHI), are discussed. In undergoing chemothera- about in facing this disease, like dealing addition, the importance of looking at py treatment for my with the nasty side effects of chemo, such data with a critical eye is stressed. Stage II breast cancer. To that point, the buying her first Victoria’s Secret bra This emphasis on critical evaluation is only breast cancer books that I’d after her mastectomy, whether to attend especially important in today’s society, in read were medical publications that I’d her high school reunion after so many which media coverage of cancer trials may devoured as I attempted to familiarize changes, and whether to nurse her child skew the significance of these studies. myself with my terrible diagnosis and its with her one remaining “good” breast. For example, in the case of the Women’s various treatments. For the most part, I Ms. Lucas shares the good and the bad Health Initiative study (WHI), the found the books morbid and dry and in her upfront and honest style. And importance of examining the absolute risk, strangely void of information on young there are plenty of funny and ridiculous as well as the relative risk of disease is women stricken with the disease. So I was moments (like going to a strip club the discussed. Specifically, media reports pleasantly surprised to discover Why I night before her mastectomy!) to keep emphasized that the WHI study reported Wore Lipstick to My Mastectomy, a things from becoming too gloomy. that combined estrogen-progesterone personal account of a young woman’s To summarize, reading Why I Wore therapy caused a 26% increase in the risk journey through breast cancer. Lipstick Lipstick to My Mastectomy made me of breast cancer, but few media accounts chronicles Geralyn Lucas’s sometimes sad, laugh and cry and, in the end, feel detailed the fact that this 26% increase in sometimes comical and ultimately inspired and empowered. It entertained breast malignancy translated into eight uplifting story of self-acceptance after me while highlighting for me many of the additional cases of breast cancer each year such a life-altering illness. unique issues that young women stricken among 10,000 women who were taking Ms. Lucas was only 27 years old, with the disease face. I can only hope that combined hormonal therapy. recently married and working her dream I can share some of Ms. Lucas’s pluck and This reference intersperses its informa- job at ABC News when she was diagnosed tenacity. If you’re interested in learning tion with personal stories from women who with the disease. Lipstick poignantly more about Ms. Lucas and her book, have been diagnosed with breast cancer. captures her struggle to maintain a sense see her 2004 TV interview on The The stories not only help to solidify the of self as she copes with the ravages this Today Show at http://www.msnbc.msn. points that are made in the chapter, but disease has on a young woman, like com/id/6280539. These books are available in most bookstores, through the Internet, or can be checked out at The Learning Center at M. D. Anderson http://www.mdanderson.org/departments/tlc/ Lucas G. Why I Wore Lipstick to My Mastectomy WP 870 L933w 2004 • Hartmann, L.C, & Loprinzi, C.L. Mayo Clinic Guide to Women’s Cancers WP 145 M473 2005 -upcoming Events • The Beth Sanders Moore Workshop for Young Breast Cancer Survivors A special conference addressing the issues of young breast cancer survivors following the Anderson Network’s annual Living Fully With and Beyond Cancer Conference Saturday, September 9, 2006 Houston Marriott Westchase www.mdanderson.org/youngbreastsurvivor www.mdanderson.org/patientconference • In Living Pink Gala A fundraising event for the Houston Affiliate of the Young Survival Coalition, an organization of young women diagnosed with breast cancer ≤ age 40 Wednesday, September 13, 2006 Hobby Center for the Performing Arts email@example.com • Pink Ribbons Project The Second Annual Texas pledge bike tour solely benefiting breast cancer awareness and education Dasani Tour de Pink 2006 Sunday, September 10, 2006 www.tourdepink.org • Pasta Party and Silent Auction Resources for Young Women Join the Komen Houston affiliate at the Fifth Annual Pasta Party • The Beth Sanders Moore and Silent Action for a fun-filled evening of music, eating, Young Breast Cancer Survivors’ Program mingling and bidding www.mdanderson.org/youngbreastsurvivor Thursday, September 28, 2006 • The Susan G. Komen Breast Cancer Foundation InterContinental Hotel www.komen.org www.komen-houston.org • The Komen Foundation Houston Affiliate • Komen Houston Race for the Cure® www.komen-houston.org The largest foot race in Houston with more than 25,000 • The Young Survival Coalition participants raised more than $1 million last year http://www.youngsurvival.org Saturday, September 30, 2006 • fertile Hope Sam Houston Park Downtown http://www.fertilehope.org www.komen-houston.org • Infinite Boundaries A four-day wellness program for women who have experienced breast Support cancer. Each retreat features a unique mixture of healing approaches: uplifting discussions, creative arts and outdoor adventures • IN HOuSTON… November 16-19, 2006 The Knockout Roses Breast Cancer Recovery Foundation Second Monday of the Month www.bcrf.org • E-mail: firstname.lastname@example.org 5:45 p.m. to 7:30 p.m. The Rose-Joan Gordon Center • Cancer Survivorship: Embracing the Future 3400 Bissonnet, Suite 185, Houston, TX Third Biennial Cancer Survivorship Research Conference Contact Person: Amy Rigsby (713) 660-6675 ext. 1 A conference welcoming researchers in behavioral and biomedical science, health care professionals, scientists, graduate students in • IN AuSTIN….. health-related sciences, community-based advocates, and cancer Pink Ribbon Cowgirls survivors and families Third Friday of the Month October 4–6, 2006 11:30 a.m., Central Market Café Bethesda North Marriott Hotel, Bethesda, MD 4001 N. Lamar Blvd., Austin, TX http://www.blsmeetings.net/survivorship06 E-mail: email@example.com Devon & Jones Pink Sales Benefit M. D. Anderson In 2004, Alpha Shirt Company, the largest proceeds to benefit women’s cancer initiatives wholesale distributor of imprintable sportswear at M. D. Anderson. Since August 2005, the Beth and a division of Broder Bros. Co., introduced Sanders Moore Young Breast Cancer Survivors’ Devon & Jones Pink brand made exclusively for Program has received over $170,000 from Devon women by women. The brand premiered with six & Jones Pink. styles and now has 19 styles, from We are extremely grateful to our e corporate to casual attire, designed friends at Alpha Shirt for their commit- specifically to fit women. With the ment to young breast cancer survivors. success of this line, the company Please look for the complete Devon & generously designated a portion of the Jones story in our next issue. PROTOCOLS • A randomized, double blind, two-period, placebo-controlled crossover trial of sustained-release methylphenidate in the treatment of fatigue in breast cancer patients. PI: Carmelita P. Escalante, M.D. Young women with breast cancer • A pilot study of focus groups with young breast cancer survivors PI’s: Anita Broxson, M.S.N., R.N.; Karin Hahn, M.D. may be eligible for these studies. • Biobehavioral effects of yoga during cancer treatment PI: Lorenzo Cohen, Ph.D For more information about these studies, visit www.mdanderson.org or call the • Cancer communications systems – expanding use/understanding: mentor integration project M. D. Anderson Information Line PI: Cindy Carmack-Taylor, Ph.D at (800) 392-1611 or (713) 792-3245. • Components and Couple Analysis of Cancer Communications PI: Cindy Carmack-Taylor, Ph.D • Multimodality treatment of primary breast cancer occurring concomitant with pregnancy PI: Richard Theriault, D.O. • Phase III trial evaluating the role of ovarian function suppression and the role of exemestane as adjuvant therapies for premenopausal women with endocrine-responsive breast cancer PI: Marjorie C. Green, M.D. • Phase III trail of LHRH analog administration during chemotherapy to reduce ovarian failure following standard adjuvant chemotherapy in early-stage, hormone-receptor- negative breast cancer PI: Ana Maria Gonzalez-Angulo, M.D. • SPIRIT: Reproductive peer counseling for breast cancer PI: Leslie Schover, Ph.D • Spousal relationships and pain in metastatic breast cancer PI: Hoda Badr, Ph.D Anita Broxson, Program Director of the Beth Sanders Moore Young Breast Cancer Survivors’ Program, and young breast cancer survivors. M. D. Anderson Research on Survivorship Exercise • Researchers at The University of Texas M. D. Anderson Cancer Center have found that exercise decreases pain and helps breast cancer survivors feel healthier and more able to Doesn’t participate in daily activities. Patient Education and Counseling, July 2006. • Approximately 60 breast cancer survivors, randomly placed in a lifestyle intervention group or a standard care control group, participated in the six-month, 21-session study. Researchers Need to be taught participants to incorporate short periods of moderate exercise into their daily routines, which included 30 minutes of physical exercise at least five days per week. Daunting • Lifestyle intervention participants met weekly for four months and then semi-weekly for two months to learn cognitive and behavioral skills to support effective behavioral change. to Reap • “The wonderful take-away message from this study is that simple exercises, such as walking during coffee breaks or parking further away from work, can have beneficial Significant effects on physical health and functioning,” said Basen-Engquist. “Exercise doesn’t need to be a daunting activity or even an organized outing to reap significant rewards for breast cancer survivors. We found that moderate intensity exercise improved participants’ ability Rewards to perform certain physical tasks, increased self-reports of feeling healthy and decreased pain and the degree to which their activities were limited by physical health problems,” said Basen-Engquist. • They are beginning a pilot study for women receiving chemotherapy before treatment called Project BALANCE. • Project BALANCE (Balancing Activity, Lifestyle, and Nutrition through the Cancer Experience) aims to prevent the weight gain often experienced by women after a breast cancer diagnosis. The study will recruit women who receive chemotherapy before surgery, and randomize them to receive in-person and telephone counseling about diet and exercise or written materials. Information gained in this study will help demonstrate the feasibility of a weight gain prevention intervention during breast cancer treatment. Can Computers Provide Support for Newly Diagnosed Breast Cancer Patients? • Comprehensive Health Enhancement Support System (CHESS) This study aims to find out what information and resources are most helpful to women with breast cancer and those who support them. • The goal of this research study is to find out if women who are newly diagnosed with breast cancer are helped by getting information, support and decision-making tools through a computer system called CHESS. • If you join, you may receive a computer with Internet access to use for six months at no charge, access to information and support in your home, and access to the latest information on new treatments. • You are eligible to participate in this study if you have been diagnosed with breast cancer within the past two months, are 18 years or older, are not homeless, and are comfortable reading English. If you are interested in participating, please call 1-866-415-5053. Special Recognition FRIENDS FOR LIFE...We deeply appreciate the generosity of the following individuals and families who have pledged or donated $5,000 or more through July 31, 2006. Patsy & Greg Fourticq * Barbara & Charles Hurwitz * Sara Dodd-Spickelmier & Founding Chairmen Karen & Mark Johnson * Keith Spickelmier * Jim & Holly Moore Kastleman * Patricia Alled Thomas Catherine & Peter Badger Alexandra & Brady Knight Lynda & William L. Transier * Tom Becker Amy & James Lee Gaye U. Tullos Kelli & Eddy Blanton, Jr. Frann Gordon Lichtenstein * Dede & Connie Weil * Mr. & Mrs. Bob Boykin * Betty & Waldo Luedemann Trish & Ty Whitcomb Pat & Dan Breen Mr. & Mrs. Harry E. Mach, Jr. Mr. & Mrs. William A. Wise B. Daryl Bristow & Rita & John Madden * Ann & Mathew Wolf * Rachel Capote Bristow Mr. & Mrs. J. Stephen Marks Cyvia & Melvyn Wolff * Kristen Cannon Karen & Michael Mayell * * Founding Benefactor Gracie & Bob Cavnar Vikki & Garry McClenaghan Dr. & Mrs. John B. Clemmons, Jr. * Kathy & Jody McCord * Mr. & Mrs. John B. Connally, III * Norma & Marvin Meyers Rose & Harry Cullen * Melissa & Michael Mithoff * Friends For Life is a permanent Diane & Harold Farb * Denise & Bill Monteleone * endowment established in honor of Beth Courtney Hill Fertitta & Jess & Beth Sanders Moore * Sanders Moore by individuals, foundations Jason L. Fertitta * Phoebe & Gray Muzzy and corporations desiring to develop the Janeen & Julian Fertitta Shannon & Robert O’Brien reach and expand the existence of the Christine & Bentley Fondren Kay M. Onstead Beth Sanders Moore Young Breast Cancer Gregory Fourticq, Jr. * Cabrina & Steven Owsley * Survivors’ Program. The initiative is Lisa M. Frantz Nancy & Dan Powell designed to significantly broaden the Mr. & Mrs. Michael Gamson Karen & Eric Pulaski expanse of the program more rapidly Dr. & Mrs. Gary M. Gartsman Liz & Robert Rigney than that originally envisioned. To learn Tony & Mary Gracely Regina Rogers * more about joining Friends For Life or to Linda & John Griffin Dr. Jack & Mary Jane Baldwin Sanders * provide other support to the Young Breast Janet Gurwitch * Leslie & Shannon Sasser Cancer Survivors’ Program, log onto: Laurie & Alfredo Gutierrez Melissa & Doug Schnitzer www.mdanderson.org/youngbreastsurvivor Maureen & Jim Hackett Connie & Ray Seegmiller * or contact the Development Office, Bill Hamilton Nancy & Randy Shawell The University of Texas M. D. Anderson Pamela & Adam Hamza * Suzanne Sklar Simons* Cancer Center, P.O. Box 4486, Houston, TX Mary Jo & Ronald Hatfield Alicia & Lance Smith 77210-4486, (713) 792-3450 or (800) 525-5841. Courtney & Bo Hopson * Stewart & Mary Stanton Smith * E-mail: firstname.lastname@example.org CORPORATE PARTNERS Ad Hoc The Legal Placement Company • Angel Sanchez USA • Bailey Banks & Biddle • Bill Hamilton, New York CeCe Cord • CH Carolina Herrera • Devon & Jones • PaperCity Magazine • Town & Country Magazine The University of Texas M. D. Anderson Cancer Center Non-Profit Org. Anita Broxson - Unit 1354 u.S. Postage PAID P. O. Box 301439 A quarterly publication from The Beth Permit No. 7052 Sanders Moore Young Breast Cancer Houston, Texas 77230-3721 Houston, TX Survivors’ Program at M. D. Anderson ADDRESS CORRECTION REQUESTED Karin Hahn, M.D. Director, Breast Survivorship Clinic P.K. Morrow, M.D. Associate Director, Breast Survivorship Clinic Anita Broxson, M.S.N., R.N. Program Director and Managing Editor 713-792-2817 E-mail: email@example.com www.mdanderson.org/youngbreastsurvivor Graphic Design & Photography: M. D. Anderson Medical Graphics & Photography