Peer Support Throughout Your Journey

InsightWINTER 2013/2014 Supporting Each Other: Peer Support Throughout Your Journey

By Josh Fernandez

eresa Li of Chicago, Ill., was shocked to learn she had stage III breast cancer.

QUALITY OF LIFE T A 39-year-old mother of two children This type of support can take the form of phone calls, who were younger than 8 at the electronic messaging through online chat rooms or time of her diagnosis, she felt forums, one-on-one or group in-person meetings, and troubled by the treatment through social media sites including Facebook. decisions she had to make, the David Spiegel, MD, director of the Center on Stress uncertainty of her future and and Health and professor of psychiatry and behavioral how to tell her children about sciences at Stanford University, says this type of support her diagnosis. is important because people are social creatures and a “It all seemed so over- cancer journey can be isolating, especially if you feel you whelming, and I knew I couldn’t are burdening family and friends with your worries.

TE handle it all by myself,” Teresa, “Part of what is helpful with peer emotional support RE SA LI now 41, remembers. and counseling is that you feel less alone with your Then she discovered a breast cancer hotline. Speaking disease,” Dr. Spiegel says. “It helps you learn to treat your with a volunteer with a similar diagnosis eased her emotions as friends rather than enemies, and that your worries. From there, she became involved in a monthly in- feelings are not something to be suppressed for your person support group for women with cancer and, soon family and friends. Furthermore, you learn that you can after, discovered the extensive network of online and give as well as receive advice and support — your cancer social media resources available to her for peer support. experience can become an asset, not just a problem.” The more peer emotional support Teresa received, At times, Doreen Bailey, 50, of Clarkson, the better she felt. Mich., withheld her feelings not just to protect Y E L I her loved ones, but also because she did not A B think they could relate to what she was N What Is Peer Emotional E E

R experiencing.

Support? D “My family and friends were very According to Peers for Progress, a program supportive, but it’s difficult for someone of the American Academy of Family who hasn’t gone through a breast cancer Physicians Foundation, peer emotional diagnosis to completely understand what support is when “people with a common you’re feeling,” Doreen says. illness are able to share knowledge and Peer support differs not only from the experiences — including some that many health kind of support that loved ones can offer, but workers do not have.” also from the type of support healthcare providers can extend. Rosa Canosa, MSW, MPA, LCSW-R, program

Continued on page 10

NEWS • INFORMATION • EDUCATIONAL RESOURCES • LEARN MORE ONLINE AT LBBC.ORG LBBC Staff Jean A. Sachs, MSS, MLSP Chief Executive Officer Joanne Bursich Chief of Staff Dear Friends, Arin Ahlum Hanson, MPH, CHES Kathy Arocho I am pleased to share exciting news of a milestone. Last month we Lindsay M. Beckmeyer celebrated the 1-year anniversary of live answering hours, Monday – Michelle Bielko Friday, 9 a.m. to 5 p.m ET, on our Breast Cancer Helpline. Throughout Ashley Burczak, MDiv the past year, we at LBBC have seen the positive way in which the Catherine Creme Henry, MA expansion of answering hours brought comfort and support to an Josh Fernandez increasing number of people, demonstrated by an 87 percent increase Lynn Folkman, CMP Caryn Freas in call volume compared with calls received 1 year ago today. Kevin Gianotto Amy B. Grillo To date, 99 dedicated volunteers affected by breast cancer have been Janine E. Guglielmino, MA trained to offer callers peer emotional support, as well as practical Dominique Holland information, through caring and confidential telephone exchanges. Nicole Katze, MA Vicki Klopp As part of our commitment to actualizing our vision — a world where Claudia Lilley, MPH no one impacted by breast cancer feels uninformed or alone — a Sandra E. Martin caller can be matched with a Helpline volunteer who shares similar Mary Beth Mills, MS characteristics including age, stage of diagnosis, or treatment type. Brittaney Shade Anna Shaffer Celeste C. Terrinoni, CPA Whether you are newly diagnosed, in active treatment, or years Christine Ware, MEd beyond treatment, one thing is constant: We will continue to be here Byron Hewett for you through our Helpline so you never feel alone. Chair, Board of Directors With this commitment comes news of further expansion. I am thrilled to share that you can now call (888) 753-LBBC (5222) Monday – Friday, Living Beyond Breast Cancer’s Insight newsletter is designed for education and from 9 a.m. up until 9 p.m. ET and will be connected to a live volun- information purposes only. The informa- teer. We look forward to serving many more people through those tion provided is general in nature. For four additional hours of live support each weekday. answers to specific healthcare questions, consult with your healthcare provider, as treatment for different people varies with As 2013 draws to a close, please make a donation to LBBC and know individual circumstances. The content is it is through your generosity that we can continue to expand our not intended in any way to substitute for support services, just like our Breast Cancer Helpline, to better serve professional counseling or medical advice. all people affected by breast cancer. Secure donations can be made online at lbbc.org/gift or sent to our office. Living Beyond Breast Cancer® 354 West Lancaster Avenue Suite 224 Warmly, Haverford, PA 19041 Breast Cancer Helpline (888) 753-LBBC (5222) Voice: (610) 645-4567 Fax: (610) 645-4573 Email: [email protected] Website: lbbc.org Jean A. Sachs, MSS, MLSP Blog: livingbeyondbc.wordpress.com facebook.com/ livingbeyondbreastcancer

@LivingBeyondBC Laurie Beck Photography

youtube.com/LBBC1991

pinterest.com/livingbeyondbc living Beyond Breast Cancer Newsletter design: Masters Group Design To connect people with trusted breast cancer information Main cover photo: Laurie Beck Photography and a community of support. profile bREAST CANCER HELPLINE (888) 753-LBBC (5222) 3

ou learn so much more information you can oung Survival Coalition’s Face 2 Face network. oung Survival Coalition’s

National Breast Cancer LEAD, a program of the National Breast Project W C4YW at women 15 of group inaugural an of Part we could do when we got were charged with what “We and sought a second to her word, she went home True realized TeMaya herself, for advocating Through the reluctance to discuss also was acutely aware of TeMaya and reluctant“My mother was shocked with the diagnosis have now expanded from speaking Her advocacy efforts received science-based advocacy training in 2013 TeMaya world when you start getting into a whole different “It’s Delta Sigma She is using that training to help her sorority, has other plans as well. “I hope to start a family in TeMaya , TeMaya Advocate program Young participating in LBBC’s ways to speak up for breast cancer issuesreceived training on personally and publicly. and concerns — both do was advocate forhome. And I said the first thing I would says. myself,” TeMaya entirelyan assembling steps, treatment next about opinion oncologist. Shenew medical team, except for her medical decided to have both breasts removed. has health insurance,inequities in care exist. Although she or underinsured andshe began thinking about the uninsured would they fight tothose without disability coverage. “How beat the disease?” she asks. having experiencedbreast cancer among African-Americans, that unwillingness in her own family. familyother with cancer breast had daughter her share to members,” she says revive helping is She others. for advocating to herself for up , a nationalan Atlanta affiliate chapter of the Sisters Network by breast affected organization of African-American women TeMaya’s reflects credo, “Stop the Silence,” The group’s cancer. own commitment to increasing breast cancer awareness and acceptance among African-Americans. She also participates in the local Y from Coalition, and wants to participate in more research-focused activities. the research. Y share with people,” she says. “If they’re not pleased with their medical care, you can give them hope to see where a possibility.” there’s Theta, work on breast cancer awareness. Her goal: “to get young African-American women talking about the disease, planning for prevention and getting out of the denial stage.” 2014,” she says.

oung Survival Coalition. She attended the

is still surprised by her role as an advocate for, by her role as an advocate for, is still surprised eMaya Eatmon or supporter of, those diagnosed with breast cancer, and by her her and by cancer, those diagnosed with breast or supporter of, An operations manager from Atlanta, TeMaya could not could from Atlanta, TeMaya An operations manager “I want it to be over with, Her view now is much different. about a month when was married for At age 36, TeMaya she miscarried. When TeMaya A few weeks later, discovered theDuring the procedure, the surgeon Conference presentations helped her understand how have to just I realized I didn’t “When I went to C4YW, “For me to go and see other women who were young and

ago, when diagnosed, how centralhave imagined 1 year she At the time today. life her in be would work advocacy to be over and my life to go backthought, “I want everything be,” she says. to the way it used to be over with.” won’t but until breast cancer is eradicated, it She contacted her OB/ she noticed discharge from her breast. reveal the problem, butGYN who sent her for tests. They didn’t The discharge continued, was pregnant. she discovered TeMaya with pregnancy. was told it was associated but TeMaya she was to her doctor, mentioned the continuing discharge A mammogram and ultrasound sent to a breast center. (non-cancerous) showed she had a papilloma, a benign scheduled to removebreast growth. Surgery that had been caused the miscarriagea uterine fibroid believed to have papilloma.would now also involve removing the ductal carcinoma inpapilloma was covering widespread TeMaya then had situ, cancer confined to the breast ducts. could not get cleartwo lumpectomies because the surgeons Still, aftermargins, areas of healthy tissue around the DCIS. were not clear. the margins the second lumpectomy, willingness to talk with others about her breast cancer experience. cancer experience. with others about her breast willingness to talk says TeMaya. “If I hadn’t been to the conference, I wouldn’t conference, I wouldn’t been to the “If I hadn’t says TeMaya. be as comfortable with where I am now.” important a role she had in her own care. get a second opinion,” I could listen to my [first] doctor.

other young women and, specifically, African-Americans.” other young women and, specifically, to the breast center was overwhelming because I never saw hear the stories, that was amazing,” she says. “Even going

cancer like herself. first time she had been around women affected by breast first time she had been around women affected annual event only 2 months after her diagnosis. It was the by LBBC and Y , hosted Women for Young Conference learned about C4YW: lbbc.org, our website, to look for information. There she Knowing she had decisions to make, TeMaya accessed Knowing she had decisions to make, TeMaya Finding Connections at C4YW for Herself andfor Other Women

SHAW, FOR LBBC RSHAW, by ROBIN WA

Young Advocate SpeaksYoung Up T

living Beyond Breast Cancer cancer information connect people with trusted breast To and a community of support. Recognizing the Unfamiliar: A Survey of Less Common Breast Cancers

by nicole katze, ma

he American Cancer Society estimates 232,340 new cases of invasive breast cancer — T cancers able to travel to distant parts of the body — will be diagnosed by the end of 2013. Many cancers will be found after a woman discovers a in the nipple or areola itself, which explains why a small hard, uneven lump during a breast self-exam or an annual number of women with Paget disease of the nipple do MEDICAL INFORMATION mammogram shows a suspicious shadow. not have a primary tumor in the breast or have a separate, yet for women who develop some of the breast cancers unrelated tumor from the disease in the nipple. highlighted in this article, which account for roughly 2 to By the end of 2011, Ivy had surgery to remove the nipple 14.5 percent of all diagnoses each year, these common and areola — sometimes called a central lumpectomy — stories may not hold true. and radiation. Because Paget disease can be hormone “These rare cancers can take many women by surprise receptor-positive or HER2-positive, treatment plans follow because they aren’t garden-variety,” says Anees Chagpar, the standard of care for those subtypes and are influenced MD, an associate professor of surgery at the Yale School by whether the cancer has traveled to lymph nodes. of Medicine and director of the Breast Center at Smilow “People automatically think that breast cancer presents Cancer Hospital at Yale-New Haven. as a lump,” says Ivy. “I walked around with cancer for a year without knowing. If you have a sore, no matter how small, Paget Disease of the Breast see a doctor and ask them to rule out Paget.” “We women believe we have good knowledge of breast cancer with the amount of information that’s Malignant Phyllodes Tumor available today,” says Ivy Szematowicz, 63, Carey Persico, 52, of Massapequa Park, N.Y., is one of Brandon, Fla. “But so often we’re of the estimated 500 to 1,000 women living in hearing broad generalizations and we America each year who are diagnosed with could be ignoring serious symptoms.” a malignant phyllodes tumor, according to Ivy first noticed a flaking of the skin Richard J. Barth, Jr., MD, associate professor of of her nipple during a breast self-exam. surgery and section chief of general surgery at At first she was unalarmed. The sore left the Geisel School of Medicine at Dartmouth. I V by the flaking seemed unremarkable. But Y Two weeks before an annual mam- S z e when it didn’t heal with time, she went to m mogram and ultrasound, Carey felt at ow her gynecologist. icz something unusual but dismissed it “He seemed unconcerned and told me to use because, like many women, she has Eucerin cream to moisturize the dry areas,” Ivy recalls. fibrocystic breasts — naturally lumpy due “I felt a little foolish for being there because I thought I to the way tissue grows. was worrying for no reason.” “When the radiologist told me there

After an annual mammogram came back clear, Ivy still Ca co was ‘something’ on my scan, I assumed that rey Persi had no answer as to why the skin around her nipple was ‘something’ would be defined,” says Carey. “It flaking. Several months later, her gynecologist sent her to a was only after a core-needle biopsy was performed and [a dermatologist who ordered a biopsy. The biopsy confirmed tumor sample was] sent to [The] Mount Sinai Department Paget disease of the nipple — also called Paget disease of of Pathology for further [analysis] that I was informed of the breast — nearly a year after she first noticed symptoms. this rare phyllodes tumor.” In Paget disease of the nipple, cancer cells travel from While malignant breast tumors usually feel jagged a tumor inside the breast — most often from the ducts, or and hard, a phyllodes tumor is unique in that, whether pathways that carry milk, but also from the lobules, or milk malignant or benign, it feels smooth and moveable — like glands — to the skin of the nipple and the areola, the dark a benign breast tumor called a fibroadenoma. Pathology circle around it. This can cause symptoms similar to many tests must confirm the lesion as phyllodes, because it looks skin conditions including itching, tingling, redness or flaking similar to a fibroadenoma on imaging tests. skin. In some cases, a yellowish or bloody liquid may leak Unlike most other breast cancers that grow in the from the nipple, or the nipple might invert and become flat. lobules or ducts of the breast, phyllodes tumors arise in the LBBC. org l e a rn m ore at Some experts believe in other cases cancer cells form connective tissue. Tumors often grow so quickly that they 4 MEDICAL INFORMATION bREAST CANCER HELPLINE (888) 753-LBBC (5222) 5

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had pain in her right breast and a small lumphad pain in her right breast and a small above nipple. Her doctor ordered a mammogram,her , a testShe eventually had a coned down mammogram Alvarez calls an In the cancer world, IBC is what Dr. Morgan Welch Alvarez and colleagues at the Dr. “Clinical trials are the best way for IBC to be treated,” For a list of resources about these four breast cancers, “IBC usually appears in younger women, and the in younger women, and the “IBC usually appears tissue, causes the sameMastitis, an infection of breast but all it showed was a spot slightly denser than the rest ofbut all it showed was a spot slightly denser the breast. A more thoroughly. able to check one portion of the breast biopsy later confirmed IBC. have a specific “orphan” disease — one that doesn’t molecular signature, clear targeted treatment options or diagnosesand aggressive also It’s prevention. of means seem to be on the rise. Inflammatory Breast Cancer Research Program and Clinic are working toward a better understanding of IBC and how date, they believe there may be as many as 10 to treat it. To from one another. subtypes of IBC, all different he says. “Subtyping has brought about a new era for the treatment of not only common and rare breast cancers, but all cancers.” newsletter our within List” “Resources article’s this visit archive online at lbbc.org/About-LBBC/LBBC-Newsletter- and-Publication-Archive/National-Newsletter Inflammatory Breast Cancer 4,000 approximately affects breast cancer Inflammatory says year, each people atoncology medical breast of department the in professor Center and in Anderson Cancer MD of Texas the University Cancer Breast Inflammatory Welch Morgan the of the Like Paget disease and Clinic in Houston. Program by symptoms a woman might notice butnipple, it is marked not attribute to cancer. in a very short period of time, in as fewsymptoms come on familiar says. “Not all physicians are as 3 to 4 weeks,” he women are told it may be mastitis.” with it, so in many cases and tenderness as IBC. However, redness, swelling, warmth an antibiotic and the symptoms don’t if a doctor prescribes issue is unlikely mastitis. the go away,

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l medical ho Nic et, whether it is Linked to a mutation in the BRCA1 gene, Nichole Daegele, of New Haven, Conn., was diagnosed but cancer, “I learned I had triple-negative breast Criteria for identifying this cancer are “not necessarily “Mine really seems to be a sporadic case. No one knows Given the low number of people diagnosed each year, year, diagnosed each low number of people Given the likelook tumors what phyllodes know “Pathologists respond well to chemotherapy Phyllodes tumors don’t that are usually triple-negative. Under the microscope,that are usually triple-negative. Under — unlike normaltheir cells appear poorly differentiated specialized —breast cells that are well developed and and are arranged in sheets without glands. are often associatedmedullary breast cancers commonmore than better outcomes with invasive ductal cancers — those that begin in is becauseand travel beyond the milk ducts. This traveledthey are usually found before cancer has to the lymph nodes. Only 10 percent of individuals nodesin the lymph have cancer medullary disease with at diagnosis. in 2011 at age 26. with medullary triple-negative disease says Nichole. “It’s nothing about it also being medullary,” not a lot of information about it, and not only rare. There’s what there is, you have to look for.” L. Smith, MD, MPH, standardized,” says Karen oncologist and clinical associate of the breast cancer “However, Center. Cancer Kimmel Johns Hopkins program at no evidence that treatment decisions should be there’s than for other forms of breast cancer.” made differently 6 months of chemo, nichole had a double mastectomy, and 5 weeks of radiation in 2012. She underwent genetic testing due to her young age and because the tumor was negative tested but medullary, and triple-negative both for mutations to both BRCA1 and BRCA2. The negative result left her with more questions. she says. “No matter what, how or why it formed this way,” you should be proactive and persistent about your health. No matter how young you are.” Medullary Breast Cancer massesMedullary breast cancers are soft, well-contained can be as large as 3 or 4 centimeters when first found. Theyfirst found. when centimeters as 3 or 4 as large can be along with surgery, through removed be promptly must to prevent healthy tissue, of surrounding a wide margin the breast if malignant. traveling beyond them from are someto pursue, so there are difficult clinical trials about the disease. unknowns Barth. “Sometimes they says Dr. and can identify them,” or progesterone receptor- are estrogen receptor-positive have the clinical evidence to know positive, but we don’t most likely to work as we [do] withwhat treatments are other breast cancers.” so surgery is the primary treatment. or hormonal therapy, Y also be offered. Radiation therapy may necessary is still a controversy, one Dr. Barth is studying in studying is Barth Dr. one a controversy, still is necessary phase II clinical trials. LBBC Presents at Major Conferences, Updates Publication and Expands Helpline

by JOSH FERNANDEZ

Save the Date – Sunny Florida! December. This survey engaged both women with triple-negative breast cancer and women LBBC and Young Survival Coalition invite with hormone-positive breast cancer. you to ditch the snow and 30-degree The goal of the online survey was to temperatures and join us in sunny Orlando, gather information from nearly 1,000 women Fla., for our Annual Conference for Young nationwide to learn about the gaps in Women Affected by Breast Cancer (C4YW)! resources, support and information for women The conference takes place Friday, living with early-stage and metastatic triple- February 21 – Sunday, February 23, negative breast cancer. 2014, at the Hilton Orlando Lake Results are being compiled and analyzed. update news and education Buena Vista Hotel in the Walt Disney LBBC anticipates publishing our findings by World Resort. Our general sessions early spring 2014. are Armchair Discussion with the Medical Experts, Resiliency after Breast Cancer and Cooking with Fit and Flair. For more information Conference Round Up about the general sessions and our LBBC’s Arin Alum Hanson, MPH, CHES, man- workshop offerings, visit c4yw.org. ager, Young Women’s Initiative, attended the Advanced Breast Cancer Second International Consensus Conference, also called ABC2, in Lisbon, New Edition of Emotions Portugal, from November 7 – 9 to present “Defining the Unique and Persistent Needs of Young Women in the U.S. Guide Now Available Living With Metastatic Breast Cancer Through a Multi- LBBC is excited to inform you that a new Phased Needs Assessment.” edition of our Guide to Understanding The abstract, based on the YWI needs assessment Your Emotions was produced this fall research, was presented to hundreds of medical and can be ordered in print or accessed professionals from more than 60 countries worldwide. in PDF format online at lbbc.org. The biannual conference is the only event that brings Guide to Understanding Your Emo- together international experts to develop a set of tions will help you make sense of and established guidelines for metastatic breast cancer. LBBC learn ways to successfully manage the presented its research report Silent Voices at the first range of complex emotions you might ABC conference in 2011. experience whether you are newly Two of our research posters were accepted at the fourth diagnosed with breast cancer, beginning annual Academy of Oncology Nurse Navigators Conference treatment or about to begin your “new in Memphis, Tenn., from November 15 – 17. “What Young normal” after your initial treatment Women Want: A National Needs Assessment of Young ends. Learn how treatments can impact your emotions, how Women Affected By Breast Cancer” is an overview of the YWI to recognize the signs of anxiety and depression, where to needs assessment. “Developing Culturally Relevant Breast go for community and professional support, and strategies Cancer Resources: Getting Connected: African-Americans for coping with and responding to your emotions. Living Beyond Breast Cancer” showcased LBBC’s publication by the same name, and raised awareness of the importance of culturally-specific resources for women with breast cancer. Triple-Negative Update LBBC’s Catherine Creme Henry, MA, outreach coordinator, presented both posters at the AONN conference. In the fall, we finished phase II of our triple-negative breast We thank Arin and Katie for all their hard work in cancer research initiative. After interviewing our four representing us at these events! focus groups totaling 30 women, we launched the Survey of Breast Cancer Information and Support Needs online

LBBC. org l e a rn m ore at in early November — which stayed open through early News and Education Update continued on page 7 6 Featured Podcasts: in the upcoming year, including new videos, publications, news and education update projects, website content tailored to young women Fall Conference and to healthcare providers and more recruitment Did you miss our annual fall and training of women for the YWI’s Young Advocate conference, News You Can Use: Program. Breast Cancer Updates for Living • Arin Ahlum Hanson, MPH, CHES, manager of the YWI, Well? Do not worry — podcasts and continues to represent LBBC as liaison member to the transcripts of numerous workshops Centers for Disease Control and Prevention’s Advisory are now available online. Committee on Breast Cancer In Young Women (ACBCYW), Learn the latest in breast cancer research and established by the Education and Awareness Requires updates from the nation’s leading breast cancer experts Learning Young (EARLY) Act, to develop evidence-based specializing in treatment and quality-of-life issues. approaches to advance understanding and awareness Access the presentations at lbbc.org/Events/ of breast cancer among young women through Annual-Fall-Conference/2013-10-26- prevention research, public and health profes- Annual-Fall-Conference. sional education and awareness activities, and emerging prevention strategies. Young Women’s Update Our Young Women’s Initiative kept Volunteer and Helpline News busy this fall: November was a big month for our volunteer programming and Breast Cancer Helpline. Late this year, LBBC launched the Community Outreach Volunteer Program, an initiative in which volunteers make their communities aware of the programs and services LBBC offers. Each outreach volunteer is given a kit, which contains LBBC publications, brochures and promotional material, to help us reach more women affected by breast cancer. • Since their debut in summer 2013 through early November also marked our one-year October, the first three installments of the Young anniversary of live answering hours, Monday – Women’s Initiative’s “Let’s Talk About It” video Series Friday, 9 a.m. to 5 p.m. ET. Our Helpline expanded even have been viewed by many! “What Young Women further, as we now answer calls live until 9 p.m. ET! LBBC Should Know About Bone Health” and “Hear Me: will host a second National Helpline Volunteer Training in Communicating With Your Healthcare Team” have the first quarter of 2014. The recruitment and selection been watched by several hundred viewers and the most process for the training begins in January. popular video, “Let’s Talk About Sex (and Breast Cancer)”, The Breast Cancer Helpline is free and confidential;

has been viewed by thousands. The video series features Spanish-language speakers are available. If you have bRE AST CA N C ER H E LPLI NE (888) 753-LBBC (5222) interviews with young women and healthcare providers. questions, need to talk, or just need someone to listen, Check them out yourself by visiting lbbc.org/Audiences/ call (888) 753-LBBC (5222). We can help. Young-Women/Let-s-Talk-About-It-Video-Series • LBBC will host a YWI symposium for healthcare providers on May 27 in Baltimore. This event will be held prior to the Association of Oncology Social Work annual conference. The symposium aims to help providers build their skill sets to work with young women affected by breast cancer. All healthcare providers are welcome! E-mail [email protected] for more information. • We have entered our third and final year of our cooperative agreement with the Centers for Disease Control and Prevention as of October 2013. You can News and Education Update continued on page 7 expect many new programs and resource enhancements Photos: Bryan Mead, Zachariah N. Orchard, Lynn Folkman 7 7 Highlights From LBBC’s Annual Gala, The Butterfly Ball

By Kevin Gianotto and Lindsay Beckmeyer

n Saturday, October 12, Living Beyond Breast Cancer hosted its annual gala, The Butterfly gi v ing update Ball, presented by White House | Black Market. By the end of the evening, over $700,000 Owas raised in support of LBBC’s programs and services! 1 2

3 4 During the event, Amy Lessack, Marni Manko, Rev. Dr. Lorina Marshall-Blake and Susannah Wolf were each presented with LBBC’s Going Beyond Award, given to recognize individuals who have used their personal experience with breast cancer to help others. Among the highlights of the evening was the presen- tation of our highest honor, The Founders Award, to Ellyn Golder Saft and her father, Robert Golder, recognizing their philanthropic support of women recovering from or in treatment for breast cancer. ellyn and Robert established the Cis B. Golder Quality of Life Grant in memory of mother and wife Cis B. Golder 5 who passed away in May 2006 from complications of breast cancer. Grants of up to $2,000 per applicant are awarded to help individuals in the Philadelphia area who are diagnosed with breast cancer with immediate financial needs, with the goal of supporting a better quality of life.

1 Founders Award recipient Ellyn Golder Saft (left) and gala committee co-chair Donna Feinberg.

2 LBBC CEO Jean Sachs (third from left) and White House | Black Market president and event mistress of ceremonies Donna Noce Colaco (far right) with Going Beyond Award recipients (from left) Amy Lessack, 6 7 Susannah Wolf, Rev. Dr. Lorina Marshall-Blake and Marni Manko.

3 Dr. Steven Copit with 2012 Founders Award recipient and wife, Dr. Debra Somers Copit.

4 2013 Founders Award recipients Ellyn Golder Saft and father, Robert Golder.

5 Co-chairs John McDonald and wife Kristin are joined by their children Jack and Annie.

LBBC. org l e a rn m ore at 6 2013 event co-chairs Jeanne Marren Egan and husband Michael Egan. 8 7 Guests bid during the live auction. Donor Spotlight: gi v ing update Zac and Elizabeth Goldberg, MD

By Josh Fernandez Eager to make a donation to an organization serving those affected by breast cancer, Zac and Elizabeth Goldberg, MD, of Providence, R.I., carefully sifted through the organizations listed on Charity Navigator’s website until they found Living Beyond Breast Cancer. “It became clear that LBBC focused not just on research news and updates, but more on immediately helping people who are newly diagnosed, currently living with breast cancer or are on the road to recovery,” Zac, 31, says. “That appealed to both of us.” The Goldbergs generously donated $5,000 to us by the time their year-long pledge ended in the summer of 2013, helping us continue to fund comprehensive programs and resources for those affected by breast cancer. LBBC makes it easy to give by accepting donations in monthly installments. Providing this donation was especially important to Elizabeth, who recently finished her residency in emergency medicine at Rhode Island Hospital. At age 47, her mother was diagnosed with triple-negative breast cancer, which eventually became metastatic. She died when Elizabeth was 20 years old. “My mother never had this kind of support when she was “I was able to spend her last 6 weeks of life with her in diagnosed in the 1990s. Resources and information such as Berlin, Germany, where she had been living at the time,” what you offer would’ve been a major comfort for her,” Elizabeth, now 30, says. “She was one of the major reasons Elizabeth says. I always knew I wanted to give back to people affected by zac and Elizabeth encourage others who are affected breast cancer and their families.” by breast cancer, or who know someone dealing with zac and Elizabeth appreciated the range of programs the disease, to consider donating to LBBC because of the and resources we offer — our community meetings, support we offer. webinars, conferences and publications — and, especially, “There’s a lot a physician can do to help, but one of our current triple-negative breast cancer research initiative major things you can do to improve your happiness and to expand our programming for women affected by triple- ability to live with the disease is become an advocate for negative disease. The couple was especially fond of our yourself,” Elizabeth says. “LBBC does an excellent job of website, lbbc.org, which showcased all this information. helping women do that.”

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Thank you to our August 1, 2013 – October 31, 2013 contributors:

$100,000+ AstraZeneca Andrea and Abraham Morris $2,500–$4,999 The McIntyre Group Centers for Disease Control Comcast-Spectacor Charitable Fund AbbVie Meridian Bank and Prevention Donna and Barry Feinberg Cline Cellars Jacqueline L. Allen/ QVC Greenberg Traurig, LLP Lauren and John Colabelli BJNB Foundation ReedSmith LLP $25,000–$99,999 The Jewish Women’s Cozen O’Connor AmerisourceBergen John Reilley Eisai Inc. Foundation of Greater Renee and Robert Dubin Corporation Retail Resource Group, LLC Novartis Oncology Philadelphia: Women Louise and Peter Havens Andrea M. Barsevick and Ribbons Express The Sherman Sobin Group of Vision The Hylton Charitable Rudy Sprinkle Muriel Robinson Golf Tournament Kristin and John McDonald Golf Tournament Beneficial Bank Roxborough Memorial White House | Black Market The Plastic Surgery Rachel and Neil Malhotra Lida and Mac Bonner Hospital Foundation Timothy McKinney Heidi and James Boudreau Nancy and Phil Siegel $15,000–$24,999 Myriad Genetics, Inc. Liane and Philip Browne David R. Trinkley and 17th Annual Paddle Rally $5,000–$9,999 Esperanza and David Neu Donna and Frank Colaco Kevin M. Gianotto Customers of Chico’s FAS 5th Annual Rally for Life Andrea D. Pedano, DO Larry Colangelo Valley Green Bank GIV Foundation Abramson Cancer Center Schooner Investment Group Debra and Steven Copit Judith and David Wachs of the University of Tillsonburg Company Dover Downs Fans Family Foundation $10,000–$14,999 Pennsylvania (USA) Inc. Kim Kubek/Diagnostic Ann N. McDonald Memorial Albert Einstein Healthcare Janie and Mickey Zolot Breast Center Basketball Tournament Network Margaret and Andy Zuccotti 9 Continued from cover diagnosed with stage II breast cancer in November 2012. division director of CancerCare, oversees online, tele- Additional screening in May of 2013 determined the cancer phone and group peer support programs and says that had become metastatic. although healthcare providers can certainly “A lot of times you feel very lonely, like a dark cloud is be compassionate and warm with those following you around,” Susan says. “I didn’t really affected by breast cancer, the empathy know anybody that had breast cancer, so it was and bond between peers who share a important for me to be able to talk to anyone similar diagnosis is very powerful. who would listen.” “A peer, for example can feel Of course, in today’s technology-driven QUALITY OF LIFE freer to refer to specific providers world, peer emotional support encompasses whereas a medical professional more than just in-person support groups may be more inhibited to do and telephone helplines for those so,” Ms. Canosa says. “The bond diagnosed with breast cancer. among peers provides a safe place According to a recent study published

for someone newly diagnosed to R in Patient Education and Counseling, 31.5 O N communicate and grapple with gritty D percent of women affected by breast cancer A W A issues.” L used an online breast cancer community at some KE R W This desire to connect with other women EAVER point in time, and about 17.8 percent used social affected by breast cancer is precisely what led media, specifically Facebook, to connect with peers also Ronda Walker Weaver, 54, of Orem, Utah, to actively seek facing the disease. support from peers even though she was already blessed Seeking support via the Internet and social media was with the support of family and friends. especially important to Doreen, who lived in a rural area “I was looking for someone who could speak the with no local in-person support group for women with language of breast cancer and mentor me,” Ronda says. “I breast cancer. think everyone who goes through breast cancer treatment “The closest support group for me was about an hour can benefit from having a ‘breast cancer sponsor.’” away,” Doreen says. “I don’t think I could’ve gotten through my experience without online support.” Ms. Canosa thinks the prevalence of breast cancer in Obtaining Peer Support the United States and the limited resources in areas such Peer emotional support is commonly associated with as Doreen’s means social media and the Internet will telephone helplines and with one-on-one or group continue to flourish as avenues for accessing peer support meetings that take place face to face. and information. When Ronda was about to undergo treatment, she “A good peer support program that reached out to a support group offered by her provides training and oversight to its local chapter of the American Cancer Society. members can be a very effective tool In addition to providing her an outlet for to help people connect to each other her emotions, this support group offered and reduce that sense of isolation,” themed meetings and workshops, one of Ms. Canosa says. which taught women who experienced Support gained from interacting hair loss from chemotherapy how to wear with women through social media wigs or hats. Another support group Ronda sites complemented in-person attended allowed women to learn and or face-to-face support for both practice mindfulness meditation and yoga Ronda and Teresa. S U together. S “I needed online support when A N ronda also credits peers she met in the S I was not healthy enough to have EY M hospital setting with offering her support. O UR face-to-face support,” Ronda says about “My best support came from the chemotherapy obtaining support through Facebook during room. The other women and I were able to share tips her chemotherapy treatment. and discuss so much,” Ronda says. “We gave each other a Blogging also gave Ronda an outlet to express herself tremendous amount of support.” and receive support. Teresa started a private blog on Susan Seymour, 44 of Hopewell, N.J., found solace CaringBridge for her close family and friends to follow her in the peer support she received from discussions over journey. the telephone. She spoke with peers by accessing a few “People were cheering me on,” Teresa says. “It felt organizations’ phone support services, including LBBC’s great to get that kind of support.” Breast Cancer Helpline, for the first 6 months after she was LBBC. org l e a rn m ore at

10 QUALITY OF LIFE The Benefits of Talking With “I think this kind of platform has great potential for connecting people, but also the potential for trouble,” Dr. Someone Like You Spiegel says. Many women with breast cancer enjoy the camaraderie that That said, peer support acquired offline is not immune to comes from giving and receiving peer emotional support — challenges. Sometimes, you might get advice and opinions including the opportunity to serve as cheerleaders for one from peers that do not sit well with you. another and to discuss issues that loved ones and healthcare While in a hospital waiting room, Doreen heard providers may not be able to relate to. perspectives from people that she wishes she had not. For Doreen, the benefit of talking with someone facing “If people have a negative attitude and I don’t want similar health challenges was also the to deal with it, I tell them they’re wealth of knowledge she received allowed their opinion, but that I about treatment decisions, follow- don’t feel that way,” Doreen says. up care and overall practical tips. “A good peer support “I then don’t discuss it with them Doreen discovered her online program that provides any further.” group, “Knitters for Breast Cancer,” training and oversight Susan says she has heard through ravelry.com, a website and everything. She once openly online community for people who to its members can be expressed a craving for a cupcake, enjoy knitting and crocheting. In a very effective tool to and another woman advised her addition to talking about knitting, against it because she claimed it help people connect to the women in the breast cancer would worsen the cancer. subgroup start threads when they each other and reduce “When you put yourself out have questions or concerns and wait that sense of isolation.” there, people feel free to comment,” for responses. Susan says. “I try to ignore these “Since there are members across comments when they aren’t helpful, the globe, there is always someone and instead focus on living my life.” up at every hour of the day to respond to a question or Despite some challenges that might arise, peer emotional concern,” Doreen says, “For me, it was like someone was support in all its forms is important to Ronda because of the always there to hold my hand, even though they weren’t potential such bonding has to improve the life of someone physically there with me.” who is newly diagnosed. Teresa feels the same way about her in-person, phone ronda encountered this first-hand, but the first time and social media connections. A weekly ritual she enjoys is it happened was the day after her diagnosis. She went to the popular Twitter chat hashtag, #BCSM, which stands for the gym and began talking with a woman she had not “Breast Cancer Social Media.” seen before. During their conversation, Ronda learned the Started in 2011, BCSM has a popular weekly following on woman was 9 months from her own breast cancer diagnosis. Monday evenings. During the hour-long Twitter chat, users The coincidence moved Ronda, and the two became — and sometimes medical professionals — interact with one friends. The woman listened to Ronda’s concerns, shared another to discuss the latest breast cancer information and information and stories of her own, and even gave Ronda to swap personal stories. hats in case she experienced hair loss from chemotherapy. Teresa observes the #BCSM chat exchanges, but she The woman was her role model and guide, and it inspired sometimes shares her stories or asks questions of her fellow Ronda to want to be that peer for another newly breast cancer tweeters. diagnosed woman. bRE AST CA N C ER H E LPLI NE (888) 753-LBBC (5222) “I got to ask about reconstruction, which was such a ronda is now a Helpline volunteer for LBBC. big decision for me,” Teresa says. “Just chatting with others “It’s something I must do,” she says. “When I can support who had been through it was extremely helpful.” someone the way the survivors I have met supported me, it’s Though she has experienced success engaging with a good feeling.” others through Twitter, Teresa acknowledges that it is not If you need emotional support, LBBC is here to help. In always the easiest tool to use to communicate, especially addition to our resources available on lbbc.org, you may with the 142-character limit. find practical information from the updated edition of our Dr. Spiegel says that though it may be popular, social Guide to Understanding Your Emotions. Go to lbbc.org/ media and online peer communities may not be ideal for guides to download or order a copy. people who are not comfortable putting their life out there Do you want to talk with someone who cares and in cyberspace. He adds that without facilitation of some knows what you’re feeling? Our Breast Cancer Helpline can kind, social media could sometimes lead to misleading connect you with a peer for support today or when you’re information being shared. ready. Call (888) 753-LBBC (5222). We can help.

11 InsightWINTER 2013/2014

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News • information • educational resources • Learn more online at lbbc.org

1 Quality of Life Supporting Each Other: Educational Programs Special Event Peer Support Throughout Webinar May 18, 2014 Your Journey All webinars are held from Yoga on the Steps: Philadelphia Noon–1 p.m. (ET) Profile 3 Check lbbc.org for the latest Young Advocate Speaks December 19, 2013 program information Up for Herself and Other Update From the San Antonio Women Breast Cancer Symposium

IN THIS ISSUE 4 medical information Recognizing the Conferences Unfamiliar: A Survey February 21 – 23, 2014 of Less Common C4YW—Annual Conference Breast Cancers for Young Women Affected by Breast Cancer 6 News and Education Update Orlando, Fla. Calendar LBBC Presents at Major Conferences, Updates April 25 – 26, 2014 Publication and Expands Annual Conference for Women Living With Helpline Metastatic Breast Cancer 8 giving UPdate Philadelphia, Pa. Highlights From LBBC’s Annual Gala, The Butterfly Ball

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