Cancer Research Advocacy: Progress With a Side of Heartbreak


There's a heartbreaking reality of making a profession out of cancer, but I chose it anyway.

Not long after I'd finished chemo and had recovered from my mastectomy, I remember sitting in the support group I attend. I'm not sure how the discussion went, but somehow I ended up mentioning that I was volunteering with the Georgetown Breast Cancer Advocates and was trying to figure what kind of job I might eventually like to have. The social worker who led the group at the time (we sure do miss her and her pointed questions now that she's in private practice!) looked at me and asked about my career aspirations, "Does it have to be cancer?" At the time, the question baffled me. Of course, it had to be cancer. I not only have a pretty thorough academic education in the subject, but I have a pretty personal education, too. Fifteen years ago, it had to be cancer, so there's no reason why actually having cancer should change that.

In retrospect, I understand her question a little better now. I'm sure she sees a lot of patients who try to abandon their original career and stop doing the things they love because they feel forever changed by cancer. I'm sure that works out really well for some people (think Ellen Sigal, the patient advocate who went from being a real estate developer to the founder of a powerful cancer policy group and the lone advocate on the Blue Ribbon Panel for the Cancer Moonshot). But I'm sure she saw people who floundered trying to redefine a career by their cancer alone. I think I addressed her question well enough, telling her that this was what I'd always wanted to do, I'd just taken a break while my kids were tiny. My own experience with a cancer diagnosis just meant that I would have an additional perspective, and frankly, I'd probably be better received by the people I was hoping to help. I dismissed her question, and we moved on to discuss what someone else was going through.

Three years later, as we were finalizing details for me to join the MBCproject team as the patient advocate, I got to meet up with the associate director while she was in DC for a meeting. She gave me a little more background and insight about the project, and I got a much better vision of what they saw as its future and potential impact. After a little more than an hour sipping on a green smoothie and talking with my super healthy new friend, I headed to my car and drove across the river to Arlington energized, feeling like I was joining a team that was really going to make a difference.

And then I got home, and I found out that my friend had died of metastatic breast cancer that afternoon.

In that moment, I felt defeated. Sure, maybe I'll make a difference, but not a difference for her. Losing someone I called a friend to the disease we shared was hard. And then I realized something in a way that I don't think I'd really considered before — this heartbreak was the first of many that I had just signed up for. I had just intentionally agreed – no, I had sought out and worked hard for the chance – to make lots of new friends, too many of whom would die of the disease we shared. A big part of my job with the MBCproject is patient engagement, building a community with the participants in the project. And as I've watched the health of a new friend deteriorate, feeling pain for her family in a way that only someone who fears that same pain for her own family can, I remember the words from support group all those years ago. That social worker knew what she was asking, and she was trying to protect me when she did. I heard her words in my head, asking, "Does it have to be cancer?" She knew what I would be setting myself up for, the incessant heartache and the wounds that never quite got to heal. She was right, but I don't think she realized how much it matters to me that this project and all of the research advocacy that I do will make a difference. It didn’t take me long to decide that making a difference in the way breast cancer is treated and all the friends that I make in the process are more than enough to make up for the heartache I encounter along the way.

Related Videos
Yuliya P.L Linhares, MD, and Josie Montegaard, MSN, AGPCNP-BC, experts on CLL
Yuliya P.L Linhares, MD, and Josie Montegaard, MSN, AGPCNP-BC, experts on CLL
Image of Dr. Jorge Cortes; a man with short dark hair wearing a suit.
Image of a man with brown hair.
Image of a woman with short brown hair and glasses.
Image of a woman with short brown hair and glasses.
Image of a man with brown hair and a suit and tie.
Image of a woman with brown bobbed hair with glasses.
Yuliya P.L Linhares, MD, and Josie Montegaard, MSN, AGPCNP-BC, experts on CLL
Related Content