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My First ASCO: Impressions from a Metastatic Breast Cancer Patient Advocate

Editor’s Note: We asked MBC advocate and fellow Chicagoan Martha Carlson to attend ASCO 2018. In this article she shares her general impressions; in Part 2 she offers some insights on precision medicine in general with a look at some liquid biopsy developments. Martha contributes a regular blog on MBC issues to Cure Magazine. –Katherine O’Brien, MBCN

 

By Martha Carlson

I’ve spent the last three and a half years, ever since my HER2+ metastatic breast cancer diagnosis, around a lot of doctors. I’ve been there as they deliver bad news and when they come in smiling. I’ve seen them look at me in surprise as I walk in with hair and at a healthy weight, and I’ve been on the receiving end of the oncologist’s version of the I-pity-you head tilt.

But until this past week, I’d only rarely seen them amongst their own kind. The annual American Society of Clinical Oncology (ASCO) brings together nearly 40,000 oncologists and others involved in the cancer care continuum, patient advocates, and others. The convention, held in Chicago’s massive McCormick Place, overran Chicago with oncologists from around the world, banner ads all over the city, and loads of real news (and some hype) about progress in the treatment of cancer.

I prepped for attending by basically clicking on every link that offered advice to conference attendees (in particular, these two: https://am.asco.org/insiders-guide-2018-asco-annual-meeting, https://www.linkedin.com/pulse/asco-2018-metastatic-breast-cancer-patient-advocate-katherine-o-brien/). But nothing could have prepared me for the reality of ASCO…

Ready, Aim … Plan

How hard can it be? I knew from checking out multiple posts about ASCO that advanced planning is key for a great experience. So I dutifully went to the meeting website and used the iPlanner, which provides information about specific sessions and presenters, to schedule my days. Like I said, how hard can it be?

The Reality “Pretty darn hard” is the only way to answer that question. My 4-day schedule was 13 pages long! Looking at it made me wonder how I’d get out of bed after AD1 (ASCO Day 1), which, incidentally, was only half a day. AD2 started at the unhelpful hour of 8:00 a.m. and continued straight through to 9:00 p.m. In an attempt to reassure myself that I could do this, I took the iPlanner-produced schedule and turned it into my own pdf, where I simply entered times, room numbers, and a brief description, which brought my schedule down to a more manageable two pages and made it clear that I had overscheduled myself.

Key Advice Be open to changing your plans—talking to other people and checking out the ASCO Daily News could lead you to something you hadn’t even noticed when initially mapping out your days.

Highlight  I walked past the Patient Advocate Lounge on my first afternoon and found myself in a session that was nowhere on either of my printed plans. It was the first of several I attended that focused on oncologist communication skills. It wasn’t my favorite, but it stuck with me because the audience participation gave me insight into how oncologists struggle with patient communication.

40,000 and Counting

Before the meeting, I saw a social media post (by MBCN’s Katherine O’Brien) about the 40,000 expected attendees mirroring the estimated annual US deaths due to metastatic breast cancer. This thought really stuck with me as I navigated the crowds.

The Reality  If you’ve ever wondered what 40,000 looks like, let me assure you that it’s a lot. Even in the cavernous convention hall, there were impassable crowds, rooms so packed that the speakers were broadcast into additional giant halls, and lines to buy everything from coffee to t-shirts.

Key Advice If there’s a way to get around on the perimeter of the crowd, remember it, use it, and share it. Also, if you happen to know someone who puts her head down and always gets where she wants to go, follow her moves.

Highlight  Now that I’ve experienced a crowd of 40,000, the urgency of finding a cure for metastatic treatment resonates even more than it did before ASCO. Advocates are not alone with that urgency: The metastatic breast cancer poster session was large and packed with oncologists and researchers looking for progress, same with the oral discussion session on selected posters. Discoveries are coming quickly (although not quickly enough) and maybe someday soon that decades-old 40,000 annual deaths will significantly and rapidly decrease—it was a thrill to see how many people are working hard to do something about this disease.

 

 

With fellow MBC advocate “Mother Terlisa” Sheppard…she is awesome!

 

 

 

 

That Exhibit Hall

My first inkling that I may have underestimated the scope and size of ASCO was when I went online and clicked on the exhibit hall. I thought it was a tiny section of the map, but it was the entire map. Booth after booth after booth…

The Reality The exhibit hall is enormous. It was also enormously unpleasant. I knew from descriptions of the pharmaceutical booths (“futuristic” “free cappuccino”) that I would be venturing in, but I didn’t expect to want to leave as quickly as possible. I believe that pharmaceutical companies can be maligned without cause—they don’t have a secret cure, for example—but seeing the high-tech booths, their conceptions of cancer (I remain stymied by the relationship of flying plastic origami birds to cancer), and the expense and effort put toward marketing was depressing and broke through the way I’ve mentally compartmentalized my own cancer and its money-making aspect.

Key Advice Venture in, but as a patient this is probably not your home base.

Highlight The patient advocate booths led me to some new information about financial help, and the association booths, such as the one for oncology nurses, had information for professionals to bring to patients. If you’re someone who likes to share potentially helpful information, these booths are worth visiting. As for the pharma booths, friends directed me to the best booths for cappuccino, frozen yogurt and Chicago-style popcorn (all free, naturally) but I ended up buying water from Starbucks instead.

 

Oh Yeah, The Science

Would I be able to understand the science? Would I feel out of place in the audience? How would I know which sessions would have the most pertinent information for me and those I know? If I was anxious about any part of attending ASCO, this was it. I don’t mind being over my head but would I be getting in too deep?

The Reality Because I’ve had years of reading about my own diagnosis and treatment, and those of my friends, I have passing familiarity with a lot of drugs, protocols, and jargon. But as I said, I’m not a scientist nor am I an oncologist, so much of the deeper science required my serious focus and attention to minute details that tend to float past when I’m thinking solely as a patient.

Key Advice The Oral Discussion sessions of noteworthy posters feature researchers presenting specifics of their work followed by another specialist giving an overview of two or more related posters. That person provides context to everything that was just presented. I found these sessions particularly enlightening.

Highlight  One notable highlight was a brief conversation I had with a Stanford oncologist about the recent Right-to-Try legislation. That conversation was wonderful because this man listened to what I had to say as a patient and made sure I left with his card. It’s that kind of interaction that I did not expect at this large meeting, but witnessed all around me.

 

The Real Surprises

  • Oncologists struggle with one of the major issues I’ve faced with metastatic cancer: How to balance hope/living with the realities of the diagnosis. There was an entire session about delivering bad news. Now, I know doctors don’t always do this well but I certainly did not expect to see a room full of oncologists who knew they needed to do better. Although I wasn’t thrilled with that particular session (it didn’t give the straightforward advice I’d been hoping the oncologists would hear), the next session also focused on communication and there the presenter gave advice that went far beyond the usual “How does that make you feel?” that I hear too often when someone is trying to empathetic.

 

  • Oncologists want to save our lives or at least figure out how to help us live longer and better until that cure is discovered. They were there at 8 a.m. every morning and paying attention all day long. We are in this together, beyond the single patient-doctor relationship. All of these oncologists wanted to learn how to do more and do it better.

 

  • Don’t miss the poster sessions that interest you. There, researchers have actual posters of their work and are standing by to answer questions and elaborate on the research. Every researcher I approached was eager to tell me more and to explain in more detail why the research might matter to me, as a patient.

 

Links for news from ASCO 2018

Here are some links to some generally patient-friendly ASCO news for breast cancer patients:

https://www.practiceupdate.com/conference/376/13

http://lbbc.org/news-opinion/asco-2018-updates-annual-meeting

https://www.linkedin.com/pulse/asco-2018-metastatic-breast-cancer-patient-advocate-katherine-o-brien/

https://www.linkedin.com/pulse/oligometastatic-breast-cancer-patients-salute-dr-work-o-brien/

(And watch this space….in Part 2 of my ASCO18 overview, I’ll share some liquid biopsy/precision medicine developments.) 

 

If You Want To Attend…

Attending a scientific meeting is an opportunity to hear from the people doing research and practicing oncology in an environment that is nothing like the one you experience in a clinic visit. These meetings also offer a side benefit: Meeting other active patients who are focused on advocating for themselves and others. Attending meetings can be costly, though. There are opportunities to apply for grants that cover registration/travel/accommodations (and sometimes all three) if you are willing to apply well in advance and meet whatever guidelines or requirements they funding organization has stipulated. Here, a list of some of the larger meetings and how you might apply to cover some or all of the costs:

 

American Society of Clinical Oncology (ASCO) Annual Meeting: Through the Conquer Cancer Patient Advocate Scholarship Program, patient advocates can apply to receive monetary help to cover travel, hotel, and registration expenses. Awards are based primarily on financial need, advocacy experience, and current advocacy activities and involvement. Applications for ASCO 2019 are not yet open, but watch this page  for information about this and other ASCO advocacy opportunities.

 

San Antonio Breast Cancer Symposium (SABCS): The SABCS is the largest meeting in the US that focuses solely on breast cancer. It takes place annually, at the beginning of December, and includes information on both early-stage and metastatic breast cancer (https://www.sabcs.org/Symposium-Overview). Alamo Breast Cancer Foundation (ABCF) offers limited scholarships for patient advocates, but these scholarships can cover travel/accommodation/registration. Information on guidelines and a link to the application is here (http://alamobreastcancer.org/abcf_site/advocacy/scholarship-requirements-application/)

 

Living Beyond Breast Cancer Metastatic Breast Cancer Conference: This annual meeting for people with metastatic breast cancer is not a scientific meeting but it does include updated treatment information presented by researchers and oncologists. It takes place in Philadelphia and LBBC offers several possible scholarships for people who’d like to attend. The first is a travel grant for a set amount of money based on the state in which you live; attendees can also apply for a fee waiver only. LBBC also runs a well-respected patient advocate program called Hear My Voice (HMV), which trains metastatic breast cancer patients in numerous forms of advocacy. Attendance at the conference, travel and accommodations are covered by LBBC if you are selected to be a part of HMV. To learn more, go to http://www.lbbc.org/living-metastatic-breast-cancer/hear-my-voice-program/hear-my-voice-how-apply