2019 was my second experience attending the San Antonio Breast Cancer Symposium (SABCS) and it’s definitely on my list for 2020 as well. My most favorite part of SABCS was participating in the GRASP Poster sessions. GRASP is part of Storm Riders, which is an excellent website by and for stage IV metastatic breast cancer patients.
Written by Abigail Johnston
Patients, scientists and scientific partnership
From the Storm Riders’ website: “Guiding Researchers & Advocates to Scientific Partnerships” – (GRASP) is a patient-led initiative to bring patient advocates and scientists together for a guided walkthrough of scientific posters presented at the San Antonio Breast Cancer Symposium (SABCS). GRASP seeks to create a private interactive learning environment whereby:
- Patient advocates can ask questions to better understand scientific posters in a more robust and meaningful manner, and
- Members of the science community can engage directly with the people they are trying to serve while fostering a sense of urgency and purpose to their research. The first walkthrough happened at the SABCS in 2019 and I was privileged to participate as a mentor. This simply meant that I put on my usual “learner hat” and modeled how to ask respectful questions of the researchers presenting their posters to the other patient advocates in my group. The groups were organized by the founders of GRASP, Christine Hodgdon, and Julia Maues, who are rockstars by themselves in terms of patient advocacy and simply knocked it out of the park on their first effort.”Let me take a step back and describe the poster session better. Every year, the various committees organizing the annual SABCS (it was the 42nd annual meeting in 2019) review submissions by a variety of researchers all over the world. Some of these submissions are slated for live presentations and others, the research projects not yet ready for conclusions to be presented live, are in poster format. These posters can be extremely complex and often use a font that requires a magnifying glass to read. The researcher or a representative from the research team is usually standing in person beside their poster to answer questions.
Deciphering the posters
For those of us who are patients, it is often daunting to try to read the posters, decipher what they mean and the fact that it is happening under the watchful eye of the researcher and there are other doctors walking around and asking very important questions, only makes it much much worse. The first year I attended SABCS, I was incredibly intimidated and I don’t intimidate easily.
Desperation with MBC
And yet… the fear of dying and the need to get relevant information applicable to my care quickly trumped any feelings of intimidation. This is also called DESPERATION and I’ve not met anyone living with stage IV metastatic breast cancer (MBC) who isn’t desperate to a certain degree. The people who have experienced progression recently or have an aggressive subtype or any other circumstance that highlights the limited amount of options are even more desperate.
Every researcher and doctor I spoke with was amazing. They defined terms for me, they explained graphics, they answered my many questions, and they helped me figure out if the results were relevant to me. There were some language issues with some of the researchers from outside the US who didn’t speak English well, but there was almost always someone who was able to step in and help with translation. I learned so much and I’ve stayed in touch with several of those researchers from 2018, especially those who are still looking into medication that may be next for me or someone I care about.
In 2019, I was much more comfortable with the format of the poster sessions and how to determine what to look for and who to talk to. I knew how to prepare ahead of time and ensure that I knew where and when the posters were being presented that I was and am interested in. This helped tremendously and I’ve connected my doctor to several of the researchers I met this year who are looking into medication that may help me directly. These ongoing collaborations and discussions can only help, even if just to guide me to trials that I may benefit from in the future.
The design of the GRASP program identified posters and researchers who were willing to participate and had accessible projects. I didn’t see all of the posters that were part of the program, but all of the posters I saw were extremely well done. The medical professionals (we each had a researcher and a medical oncologist in our group) who were with us patients also assisted with asking questions and reframing questions and one just took over the presentation from the researcher presenting the poster.
Importance of collaboration
The collaboration between medical professionals was an amazing blueprint for patient advocates. Allowing us to see what happens between professionals who respect each other set a tone for the patient advocates that I hope will translate into respectful dialogue in other formats as well.
I can’t close until I mention the women who provided the inspiration for the GRASP program.
Amanda De Fiebre was murdered by MBC in 2019 and while I never got to see her in person during the poster sessions at SABCS, I understand that she loved the poster sessions. I’ve heard stories about how Amanda cornered various researchers to ask a barrage of questions at SABCS. Amanda had brain mets and that meant she was often excluded from trials that might have helped her live longer. In honor of Amanda’s life and her passions, her family sponsored twelve (12) advocates so they could attend the conference. What an amazing legacy!!
Janice Cowden is a dear friend living with metastatic triple-negative breast cancer and also attended SABCS in 2018 and 2019. I have heard a story where she asked a question of a researcher/patient, Dr. Corrie Painter, who is the Associate Director of the Board Institute and part of the Count Me In project. Dr. Painter explained some complicated science in simple terms and that exchange was observed and noted.