Hearing and Being Heard at San Antonio Breast Cancer Symposium 2019

Susan Swanson was one of four Living Beyond Breast Cancer leadership volunteers to receive a grant to attend the 2019 San Antonio Breast Cancer Symposium.  Athenex sponsored Susan’s scholarship and that of another volunteer.  In this blog Susan reflects on attending sessions, talking with doctors and industry representatives, and connecting with other patient advocates at the conference.

Attending the San Antonio Breast Cancer Symposium as a patient advocate was, in many ways, exactly what I expected and yet very different. I expected that I would spend the majority of my days sitting and listening to the latest in breast cancer research and hearing about exciting new treatments in the pipeline to treat metastatic breast cancer. And I did indeed spend a lot of my time in sessions, listening to doctors and researchers present their data. It was fascinating but sometimes challenging to follow the high level of scientific lingo and acronyms. What was often more interesting were the conversations I had with people sitting around me. Frequently they were prominent doctors but I found so many open to my questions as the sessions finished. A simple question about something I didn’t understand began a conversation that I would never have been able to have if I had not attended SABCS. It was a completely different interaction from the typical doctor-patient relationship that I have with my doctors. My doctors are always willing to answer my many questions, but at San Antonio I felt like we were much more on even ground. I was seen not as a patient, but as a partner.

I was also surprised at the relationships I forged with other advocates at SABCS. I was fortunate and grateful to be sponsored by LBBC and Athenex, and I spent a lot of my time with the other LBBC advocates. Although we had never met, we bonded immediately. The four of us were from completely different backgrounds with very different stories, unfortunately all connected with a diagnosis of metastatic breast cancer. The days were intense, often we were going for over 14 hours, but we all looked after each other. When there were two sessions at the same time, we split up and shared notes so we didn’t miss anything the conference had to offer.

I also got to meet advocates from all over the world. What I found so interesting was that while we each had a different focus for our advocacy we all spoke a common language. Small talk was almost never a part of our discussions. It seemed as soon as we introduced ourselves we were discussing deep, highly personal parts of our journey in the cancer world. There is a sense of great urgency in the metastatic community and it was evident in our conversations. We had so much to say and discuss, so much information to share that we would, in a very short time, jump from topic to topic, but the depth of conversations were so intense, raw, and practical all at the same time. There is so much work to be done in understanding and developing better treatments for metastatic breast cancer and the more I talked to advocates the more I was sobered by the size of that challenge.

Some of the most interesting interactions I had at SABCS were with pharmaceutical companies. I was fortunate when I was there to meet the scientist that was responsible for creating a drug I was on for 5 years. It is easy to think that drug development is all about money for these corporations, but when you meet individuals working for them you realize that for many of them this is personal. I enjoyed meeting people working for these companies and I worked hard to put my story in front of them. I think it is so important that the pharmaceutical world is continually reminded that we are people, just like them, that desperately need the medicines they are bringing to market. The metastatic community’s urgency needs to become the pharmaceutical companies’ as well. Having the time to interact with them at SABCS and discuss the challenges people with breast cancer have with treatments and clinical trials was one of the most valuable parts of the week to me.

As the week ended and we all got ready to leave, I was struck by how much I felt I and the other patient advocates had accomplished. We all worked so hard to not only learn from the doctors and researchers, but also to have them learn from us. Our voice is an important, often missing part of trying to move the needle towards making metastatic breast cancer chronic and ultimately finding a cure. On a personal level, I left San Antonio grateful for the opportunity and motivated to work harder to increase participation in clinical trials. I also left with many new friendships and professional relationships. I hope to return next year!

Learn more about the research Susan and other advocates saw presented in San Antonio by reading the rest of our SABCS coverage.