As you probably noticed, I was running out of steam those last few days in San Antonio! Big conferences like the San Antonio Breast Cancer Symposium (SABCS) before my diagnosis were a challenge since I have to expend a lot of energy around other people and that struggle has gotten so much worse after I was diagnosed with Stage IV Metastatic Breast Cancer (MBC) in 2017. This year was my 5th time attending the conference and I like to think that I’ve learned a few things over the years; at the same time, I was running on fumes at the end of each day and was so very depleted by the end of the week.
Friday, the 9th of December was the last full day of learning for this year’s symposium. As usual, the week just flew by! I took some time Thursday and Friday to sleep in a little and not attend the first sessions of the day which start at 7 a.m. Definitely starting to run out of those spoons that keep me going despite all of the amazing opportunities to connect with others.
I spent some time in the advocacy lounge that last day, working on the paper I’ll be turning in for the Alamo Breast Cancer Foundation, and chatting with various people. More of the latter than the former! While the science and the learning is a big part of this conference, my favorite is connecting with other advocates and those people/organizations who support advocates. Legitimately, that’s the reason I keep coming back.
Our final educational luncheon was a presentation by the Director of Advocacy Relations at the National Cancer Institute, Amy Williams. It’s always good to learn more about how advocates can get involved at a variety of levels and the fact that there are so many of the Directors and other people in positions of power are willing to come talk with us is important. I think back with fondness to my first few times attending the conference when these sessions were so brand new.
The final Hot Topics/Mentor session featured another all female panel, Drs Virginia Kaklamani, Steffi Osterreich, and Funmi Olopade summarized the day and the week for us. Dr. Osterriech shared a comment at the beginning of the session that made us all giggle — she was telling her husband about how she was to speak that evening and called it …
Each of the mentors in this final session talked about precision medicine in their own ways. They recapped much of the results of trials that we’d heard about all week, but talked more and more about how much more doctors are learning about treating specific people. We have the general changes from “Maximum tolerated doses” to the “minimum effective dose” and focusing on not giving everyone chemo; all of which is helping doctors make better decisions about individual patients. Additionally, there was discussion about the move towards harnessing machine learning, AIs and data mining to be able to better meet the needs of individual patients. There are so many things that could come, that should come, but are often slow to take root.
One topic that got quite a bit of air time is the discussion of when people should/could get genetic testing/screening. Since this is a topic near and dear to my heart, I was glad that the doctors on the panel demonstrated the complexity of the subject with their discussion. Central to some of the angst around this issue of access to testing is how hard it often is to get insurance companies to pay for the latest and greatest in research. At the end of the day, hearing something this important is so complicate doesn’t bode well for access overall and the tension between what doctors think patients should know and what patients want to know is always present.
The last day I was in San Antonio was Saturday, the 10th of December. I got to hang out with my dear friends at SurvivingBreastCancer.org along with extended family that morning, have lunch with the amazing women behind OurMBCLife, and then head home to my family.
After SABCS and other major cancer conferences, GRASP (Guiding Researchers and Advocates to Scientific Partnerships) holds discussions on the scientific posters presented at said conference. Other than getting to meet up with people in person, the week after the conferences is also a favorite part of mine. During these intimate conversations, we get to meet scientists, clinicians, other advocates, and learn so many more details than just sitting through a discussion. I enjoyed each part of the discussions, but my favorite was getting to talk about the poster presented by Project Life with the two authors — here’s a video with the Dr. Roberson talking about her efforts:
During the GRASP discussion, the student assisting Dr. Roberson said the following …
I think this is the best definition of loneliness that I’ve heard and it defines so much of the struggles living with MBC, that being separated from what is meaningful, familiar, “normal,” expected creates trauma and so many other difficulties. Those of us living with MBC live in a shadow world existing alongside the rest of society; a world where bad news is expected and friends die all the time and the efforts to simply stay alive can often take over. Attempting to live truly authentically and genuinely takes an often super human effort, which sometimes doesn’t feel worth the required energy.
I will write more about this in future posts.
Coming back from a whirlwind conference like SABCS requires a whole lot of adjustment. The intellectual saturation of a conference is both incredibly stimulating and as well as draining. Planning a lot of discussions and presentations in the weeks and months again.