Chasing a Cure, Part III, staying abreast of research

Recently, in June of this year, the American Society of Clinical Oncology (ASCO) had their annual meeting. This annual meeting, always held in Chicago, is the largest cancer conference in the world bringing tens of thousands of health care professionals, patient advocates, pharmaceutical representatives and all those vendors and companies that are connected to the treatment of cancer and dealing with the side effects from those treatments together.

A LOT of people.

I didn’t get to go in person this year, but attended yet again virtually and so much of what I learned is still swirling around inside my head.

One other thing that was a personal goal of mine having to do with this sort of conference is the opportunity to serve as a poster author on research presented during the meeting. The poster is the result of working with a steering committee with Novartis on a trial addressing hyperglycemia created by Piqray, a drug I was on for several years. A dear friend, Debora Denardi, took a picture of that poster since I wasn’t able to be there!

After the conference, I’ve had an opportunity to talk with quite a few people about the studies and I sent a few slides, posters or articles about the data presented at the conference to friends when I knew it might be applicable to their particular subtype or treatment. If the oncologist treating those friends didn’t attend the conference or wasn’t aware of the recent research, this way those patients can bring it to their doctor’s attention to see if the information is applicable to them. I also interacted several times with the oncologist that I am leaving since she was attending the same conference and we typically interact on that research directly. She often comments how I am unique in that way, that I want to talk to her about nuances and the details of the research.

But then I got to thinking, how do I stay abreast of research? How have I figured out how to filter out what is not applicable to me and what I should talk to my doctor about?

And so I figured that I would draft a Part III of this series about chasing a cure because research is so key and integral to the possibility of a cure for MBC or other types of cancer. If you haven’t read Parts I and II, you might want to take a moment and check them out.

Here’s how I do my best to stay abreast of research:

First of all, I go to the conferences where the people treating breast cancer (or cancer generally) gather. This is primarily the San Antonio Breast Cancer Symposium (SABCS), that is held every December in San Antonio. This conference is attended by a few thousand less people than the ASCO meeting, but it’s all about Breast Cancer. Here is a list of conferences that some advocates and I put together for the newly diagnosed MBC group we admin:

Being present at the conferences, listening as best you can, interacting with other advocates, the doctors themselves, researchers, asking questions, trying to understand, these are efforts that can pay dividends. One additional note is that I collect business cards and follow up after the conference with each researcher or doctor that I interact with — this is a practice I developed when I was practicing law, to follow up and ensure that each person I want to keep in touch with has my contact information.

Secondly, I follow thousands of oncologists on Twitter and other social media platforms. While LinkedIn is the platform for more professional interactions, the #MedTwitter participants are extremely free with their knowledge and expertise. The #bcsm (breast cancer social media) community on Twitter as well is robust and full of really amazing people. Posting a question or comment or experience and including those hashtags can trigger responses from the communities that are often available with real time information. During this COVID-19 pandemic and all of the swirling contradictory information about what cancer patients should do, I often turned to Twitter to ask questions. I often got more up to date information than my doctor about how best to protect me and my family during the pandemic.

Third, I join the oncology professional organizations like ASCO. Most of the organizations who are there for those of us with cancer allow patients to join as a patient advocate for a lower cost, sometimes without cost. Joining professional organizations means you have access to their publications and newsletters, which is also another way to stay up on new research. Plus, referring back to Part II, I don’t worry as much about reliability when the information is coming to me from a publication that is run by the very healthcare organizations that my doctors belong to.

Fourth, I attend every GRASP session I can. For those of you we aren’t familiar with GRASP, which stands for Guiding Researchers and Advocates towards Scientific Partnerships, it is an organization founded by fellow MBC cancer-havers Christine Hodgdon and Julia Maues and is designed to facilitate bi-directional conversations between advocates and researchers/clinicians/scientists. After each of the big cancer conferences, selected posters are then discussed in small groups of advocates and scientists. I’ve learned so much every time I’ve participated and stay in touch with several of the scientists I’ve met. Again with the business cards (virtually) and exchanging information so that we can all stay connected.

Fifth and finally, I surround myself with people/advocates who are focused on research. Other advocates often see different things in the articles and following other people who know that research is vital to our very existence means that they are as motivated as I am to learn and understand. Many of the others advocates have a particular focus, sometimes different from mine, and this allows me also to guide people I meet to trusted resources.

As most of you know, I don’t have a medical background. I handled some medical malpractice cases on both sides of the aisle for a while during my legal career, but that was really all of the introduction I had to the medical profession before my diagnosis in 2017. I’m saying this to point out that even if you don’t have training or a background in all things medical, you can still follow, ask questions, and trying to understand medical information as it changes. Doctors and health care workers have to keep learning all the time, they just put that new information into a different framework than those of us who are receiving treatment and they have a different sense of urgency.

So, now it’s your turn, how do YOU stay abreast of medical research? Am I missing something from my list? What should be added or eliminated?

I really want to know!!

8 thoughts on “Chasing a Cure, Part III, staying abreast of research

  1. First, thank you for all the work you do as an advocate. I cannot imagine how you find the energy for all of it since there are many days I barely leave the couch! Secondly, I use Twitter a lot for cancer info and feedback. Love that about it. I also follow the Facebook group you helped create called Breast Cancer Community Support. I feel that by responding to another person’s questions about the disease is helpful and I am also helped. It was nice to read through your list of how to help and to see that I am doing at least something participative.

    Liked by 1 person

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