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Walking the Walk, Not Just Talking the Talk

(from left to right) YSC Senior National Programs Manager Megan McCann, YSC Volunteer/Advocate Amanda Nixon and me at the YSC table at the San Antonio Breast Cancer Symposium.

The San Antonio Breast Cancer Symposium (SABCS) is a BEAST of a medical conference. Everything about it — from the cavernous Henry Gonzales convention center to the incredible 200+ page program book — is big. Texas style. Five days of exhibits, sessions, advocacy briefings and networking. Almost 8,000 physicians, researchers and advocates from over 100 countries, converge in one place every year to get the latest, breaking news on clinical trials and breast cancer treatment.

As a survivor, patient advocate (patient advocates learn about the most recent breast cancer research so they can disseminate the information to their local organizations and constituents) and exhibitor, it was my privilege to represent YSC. Thankfully, I wasn’t alone in this task. My fellow YSC colleagues Megan McCann, Stacy Lewis and Jenna Glazer were there too. I expected people to wander by YSC’s table looking for giveaway pins, pens, etc. Instead, medical professionals from around the country … and the globe, stopped to take in our visuals, brochures, and the young women’s faces they saw on our posters. I spoke with breast surgeons, oncologists, nurses and patient navigators from all over the U.S. and interacted with people from Australia, Russia, Germany, Brazil, England, and South Africa. They all wanted to learn more about YSC and the women we serve.

At the end of each day, the Alamo Breast Cancer Foundation organizes a Hot Topics Mentor Session. Here an expert panel breaks down the day’s findings. The true clinical implications of the ATLAS (Adjuvant Tamoxifen Longer Against Shorter) trial were discussed. Doctors Julie Gralow (Seattle, Fred Hutchinson Cancer Center) and Judy Garber (Boston, Dana Farber) were asked how the findings might affect their treatment decisions. They immediately responded to the rumblings (many of the patient advocates were struggling with the results — the benefit of five more years of Tamoxifen, versus five more years of debilitating side effects). Quality vs. quantity of life became the hot topic! The session highlighted a very personal treatment choice between a young woman and her physician. FYI, I was very excited to discover that Dr. Gralow will be presenting a plenary session entitled, Young Women and Breast Cancer: the Future of Care at C4YW, the largest internal conference for young women affected by breast cancer that YSC co-hosts, which will take place February 22-24 in Bellevue, WA (on Seattle’s Eastside).

Triple negative (does not express the genes for estrogen receptor (ER), progesterone receptor (PR) or Her2/neu) and advanced breast cancer continue to challenge researchers. At the next Hot Topics discussion I attended, a young woman spoke passionately during the Q&A about her disappointment and concern with lack of research on triple negative breast cancer. Her passionate and heartbreaking argument ended with a call: Where is the plan? Why are we still discussing Tamoxifen after 20 years? It certainly made me think about the other side of the coin.

Other study findings of note: the better response to neoadjuvant chemotherapy (preliminary therapy, given before a main treatment like surgery) in young women versus older women; and the startling results from the UK START (Standardization of Breast Radiotherapy) trial which compared standard course radiation (six weeks), to short course (three weeks). The results showed equivalent outcomes with lower toxicity in the short course arm. Imagine the benefit to a young woman’s quality of life with a shortened radiation treatment cycle! Dr. Eric Winer (Boston, Dana Farber), acknowledged the findings, but injected a note of reason, and yes … humor. In a ringing voice, he stated, “Size still matters!” Size, in this case, referred to tumor size, of course! It reminded me of something I always read about cancer. Something so basic, yet life-saving: catch that tumor small … and early.

It was great to connect with Amanda Nixon, a stellar advocate from California with the Keep A Breast Foundation, and Sandy Castillo, a dynamite volunteer leader from Houston. Amanda shared these thoughts with me:

“Are we being over treated because we are younger? Who is paying attention to our fertility issues? Where is the sense of urgency?  But, I couldn’t help but feel hopeful for those diagnosed with early stage disease.  I really took SABCS as an opportunity to listen and learn from everyone around me.”

Time will tell if the results laid out at SABCS are working. But there IS activity, there IS movement. In fact, YSC continues to lead the charge. I feel honored to be a part of YSC’s upcoming Research Think Tank initiative, which will convene February 7-8 in Washington DC. Advocates and medical professionals from around the country will meet to refine a research agenda focused on issues critical to young survivors. So, I returned back to Ohio thankful for the opportunity to see this movement firsthand and encouraged by the researchers and physicians committed to walking the walk, and not just talking the talk.