I recently had the opportunity to attend the annual YSC (Young Survival Coalition) Summit in Atlanta. YSC is an organization that provides support and resources to young women diagnosed with breast cancer and their co-survivors. This was my first time ever attending a conference, so I was a little nervous, but it was truly a wonderful experience and I left with some great new friends and gained knowledge from the excellent speakers.
One session I attended was about relationships after breast cancer. Even though I haven’t been through cancer treatments, I have had the surgeries that can affect body image, as well as physiological effects. The speaker, Ali Schaffer, LCSW made the distinction that cancer can have very contrasting effects on different people and relationships. For some, cancer can cause physical and mental strain that can really leave couples feeling distant, alone, fearful and awkward. However, maintaining constant communication while navigating through a cancer diagnosis and all that comes with it, can actually make relationships stronger. She explained the concept of Post Traumatic Growth (PTG). PTG is a construct of psychological change that occurs as the result of one’s struggle with a highly challenging, stressful, and traumatic event as defined by Calhoun and Tedschi (2006). She explained that even on the most difficult days and the easiest days, the couple should do a quick check in to discuss how they are feeling. My favorite part of her presentation was this quote “Any catastrophic illness, but cancer especially, forces people to look at and deal with many things they didn’t pay attention to before. So take advantage of that and view it as an opportunity to make your relationship stronger.” -Katherine Puckett, LCSW.
Another session I attended was personalized medicine: immunotherapy and genetics presented by Dr. Nikhil Wagle. He is an Assistant Professor of Medicine at Harvard Medical School and an oncologist at Dana-Farber Cancer Institute. Dr. Wagle also leads a research program in breast cancer genomics and precision cancer medicine. His research aims to identify characteristics of tumors that might improve clinical decision-making for patients with advanced cancer. In other words, Dr. Wagle is one very smart guy doing amazing work for breast cancer patients! I was excited to learn about the advances being made in cancer treatments and very impressed by his presentation. It gave me so much hope about the improvements being made every day.
He discussed the effectiveness of immunotherapy and checkpoint inhibitors, especially with triple negative breast cancers. These drugs are able to “turn on” the immune system after it has been “turned off” by cancer and certain genetic mutations. The frustration with these therapies is that not everyone responds as well to the therapy and there is not yet a clear reason why.
Dr. Wagle also discussed how they are getting to the point of being able to determine tumor properties by blood biopsies. Which means being able to treat each recurrence precisely without having to do multiple, often painful or dangerous biopsies of tumors, but rather from a simple blood sample.
He explained one of the biggest challenges in developing personalized treatments is the sharing of data. In the past, larger cancer institutions have withheld their own patient data. Dr. Wagle presented a chart showing that Only 5% of U.S. cancer patients are enrolled in clinical trials and most tumor samples have not been readily available for study. Fortunately, five of the largest cancer centers in the U.S. have decided to pool their data, in hopes that having one large data bank will result in getting these personalized therapies to patients faster. The other issue with data collection is that 85% of cancer patients are treated in community settings, so their data hasn’t been available for the research at major cancer institutions.
Dr. Wagle is now leading the Metastatic Breast Cancer Project (mbcproject.org), a nationwide patient initiative that seeks to empower advanced breast cancer patients to help accelerate the research by sharing their samples and clinical information, regardless of where they live. Hopefully, with the data sharing underway, the technology and cancer treatments can catch up with each other, leading to many lives saved.
There were several other interesting sessions offered with topics on menopause, sexual function, breast reconstruction, fear of recurrence, metastatic cancer, and co-survivor concerns. I was informed the slide shows from the presentations would be available on the YSC website soon, if anyone is interested in learning more about these topics, please visit youngsurvival.org.
Aside from learning, I was also witness to a beautiful comradery of these strong, brave, and vibrant young women. It was wonderful to see them meet and talk with other women going through or having been through the same struggles involved with breast cancer and know, they just get it. Even though I am considered a Previvor, I felt the same warmth and acceptance as I told my story throughout the weekend. I do hope that YSC will consider expanding their reach to include the Previvor community in the future, so that we can all benefit from the experience and community of young women facing these tough decisions. As I mentioned, I came away with some new friends. I would like to end with their quotes on what the YSC Summit meant to them.
“Attending my first YSC Summit was an amazing experience. Connecting with other young women who have been affected by breast cancer made me feel “normal.” They understood all of the trials and complications that come with a cancer diagnosis at a young age, that no matter how hard my friends and family try, they just can’t grasp. I met new friends who I’m sure will stay with me forever.” –Haley H.
“I gained so much from the YSC 2016 conference. My favorite part of the weekend was meeting other people and sharing stories of the breast cancer experience we have in common. I’ve had many mentors along the way that were fellow survivors, but I haven’t met anyone close to my age. The women I met this weekend gave me a renewed sense of hope, community and strength.” –Amanda S.