Surveillance is Not Enough

I wouldn’t be able to tell you the last time I cried, but I remember doing so on June 12, 2013. Tears of relief, awe, and slight trepidation. After six months of chemotherapy and five years of six-month surveillance check-ins, I left my treating oncologist’s office for the last time. I thought I was done, with cancer.   

Knowing that my five-year mark was approaching, I had started making plans. I was finally ready to make some important lifestyle changes. I quit my job and relocated to start grad school. My first assignment was to write about an aspect of my identity. I wrote about being a cancer survivor, even though I had thought I was done, with cancer. 

I was able to devote most of my degree into studying young adult cancer survivors as our own cultural group. Although we have our own individual experiences, we share a common language and are able to relate to one another on topics that others without a cancer experience just can’t. Through my studies, I discovered the AYA cancer community and more about myself, who I was, post treatment. Later, when looking for an internship, I came across the Reid R. Sacco AYA Cancer Program at Tufts Medical Center. They were dedicated to providing long-term follow up (survivorship) care to adolescents and young adults. I remember thinking how cool is this, a program devoted to AYAs! But, then I also wondered what is survivorship care? How does it pertain to me? My cancer experience had been bloodwork, cat-scans or x-rays for the past five years, what else was there?

Fast forward to today, I’ve learned a lot about survivorship care from the team I’ve been lucky enough to work with over the last six years. I now know this: surveillance for cancer recurrence is not enough. We need to know what our risks are for developing or managing late effects from treatment. I didn’t know the amount of anthracycline chemotherapy that I received puts me at increased cardiac risk and therefore I should have screening ECHOs. I didn’t know I should get a baseline pulmonary function test to check if the bleomycin had impacted my lungs. I didn’t know that the friends who I met within the cancer community who had received radiation are at increased risk of a second cancer. I didn’t know, because I thought after the surveillance period, I was done, with cancer.

At some point over the last thirteen years I stopped thinking about cancer as something that is done or that you can complete. I’ve realized it is an experience that I’ll take with me, and instead focus on how much I’ve grown and have moved forward from cancer. Even if treatment is done, our long term (physical, mental, social, financial) health requires ongoing support and consideration. I learned we must advocate for our long-term follow up care and ideally receive a personalized Survivorship Care Plan. Sometimes we choose a cause, mine found me: AYAs deserve survivorship care and to be informed of their potential of late effects from treatment. So, I guess I’m not done, with cancer after all.

This article was featured in the 2021 June Dear Cancer issue of Elephants and Tea Magazine! Click here to read our magazine issues.