As a psychologist and disaster researcher, I’ve given hundreds of presentations, including keynote addresses, at professional conferences around the world. But when I showed up this past June to spend a day at the American Society of Clinical Oncology Annual Meeting in Chicago, 40 minutes from my home in Wheaton, Illinois, I felt like I did at my first conference 20 years ago when I was a frazzled student researcher.
My decision to attend my first cancer research conference was admittedly last-minute, motivated by a recommendation from a fellow cancer survivor and a realization that I could meet some online acquaintances in person. At the conference, I was greeted by an attendant asking me which registration category applied to me. I skimmed the list of options but wasn’t sure which item to check, so I gave my best one-minute elevator summary:
A Patient Advocate’s Guide
Two graduates of the American Association for Cancer Research Scientist↔Survivor Program
share tips for getting the most out of large scientific conferences.
I’m a disaster researcher. But I’m about to start working on a small psychosocial cancer research grant. But I don’t consider myself a cancer researcher. I was diagnosed with stage IV colon cancer. But I’m NED (no evidence of disease). I also just found out I’m going to be a
Fight Colorectal Cancer (Fight CRC) Ambassador. And even though it’s been six years since I was first diagnosed, I’m just now starting to get connected to the cancer community. All that is to say: I’m not sure how I should register. (I never claimed it was a good summary).
The attendant pondered which category to place me in as I checked my email to find out where I was headed for my first meeting of the day. “You are all set,” the attendant said, handing me a conference nametag. Because I was so distracted, I didn’t notice which category she chose.
After getting lost several times as I made my way through multiple large buildings housing the meeting—more than 42,000 people registered for the gathering at McCormick Place—I arrived at the room indicated in my email: the Patient Advocate Lounge.
“I’m sorry, but I don’t see you registered as a patient advocate,” said the woman working at the welcome table just inside the lounge area. (I later learned that I could have registered as a
patient advocate and paid a reduced fee had I registered in advance.) Thankfully, before I had the chance to subject her to my rambling summary of why I was there, the person I was meeting recognized me from our Twitter conversations. “Jamie is a patient advocate,” she interjected and pointed me to a coffee table. It wasn’t until after we had been talking for a while that her words began to sink in—I was attending my first cancer conference as a patient advocate.
If you’re interested in attending a cancer conference as a patient, survivor or caregiver, inquire about initiatives and programs for patient advocates.
- Many conferences offer patient advocate rates, which are often lower than the general registration fees.
- Some conferences offer programs aimed at educating patient advocates, providing mentorship or forging connections between advocates and researchers.
- Conferences may offer scholarship programs to make it more affordable for patients to attend.
- Special rates and spaces may be available for patient advocacy organizations hoping to exhibit at conferences.
Within minutes, she had helped me get the lay of the land by introducing me to several other patient advocates, letting me know there was a whole patient advocacy section in the exhibit area, and pointing me toward some patient-centered sessions that were coming up later in the day.
After meeting with more people in the lounge, I decided to check out the exhibit area. As a researcher, I felt like a kid entering Disney World for the first time as I looked at all the cutting-edge research and information around me. But as a cancer survivor, I felt like a child with sensory struggles who was quickly overwhelmed by my surroundings.
I thought maybe I was just tired after a particularly busy week at work, and I continued to walk from exhibit to exhibit. I noticed my emotions bubbling up to the surface like thought bubbles from the
Pop-Up Video television series that used to air on VH1:
I feel both at home and lost.
I feel like part of the community and an outsider at the same time.
I feel a sense of comfort and uneasiness mixed together.
I feel curious about the latest research findings and afraid of what I might learn.
I feel like I have something to offer and simultaneously like an imposter.
I feel both energized and exhausted.
Seemingly out of nowhere, I sensed a familiar metallic taste in my mouth. My
anxiety began to rise. That’s when I realized I was reading a display outlining the benefits and potential side effects of one of the chemotherapy medications I had taken during my treatment. A lesson that I’ve learned from my cancer journey—but still struggle with—is to listen to my body. In this case, my body was telling me I needed to take a break from the conference and regroup.
I found a quiet corner to grab a quick bite for lunch away from the familiar images and reminders that had threatened to trigger unresolved emotional wounds. I gave myself permission to skip the sessions I had hoped to attend. Instead, I decided to read and prepare for my last meeting of the day, which was scheduled to take place in the exhibit area.
I once again made my way through the labyrinth of exhibits until I spotted the patient advocacy section, where I was meeting up with one of the Fight CRC team members. We had
met on Twitter during Colorectal Cancer Awareness Month. I was greeted with a smile and quickly introduced to another patient advocate. This time, my emotions bubbling up to the surface were different:
I feel at home.
I feel like part of the community.
I feel a sense of comfort.
I feel curious about the latest research findings.
I feel like I have something to offer.
I feel energized.
Though I never did make it to a single session, I learned so much from attending my first cancer conference. I realized my most meaningful moments at the conference came from embracing my patient experience—not my research experience. Attending the conference helped me start to understand where I fit into the whole cancer ecosphere and gave voice to some of my recent experiences.
Overall, my biggest takeaway from attending my first cancer conference was this: Stopping cancer not only requires experts with research skills but also experts with patient experience. Now that I know I’m a patient advocate, maybe I’ll even preregister online for my next conference.
August 29, 2019