In 1985, I was 18 years old, a freshman at Cal Poly San Luis Obispo, and living in the dorms. It was spring quarter, and I remember clearly reading on my dorm bed when I felt a small lump under my armpit. I ignored it for a few days, then went to the health center and was referred to a surgeon to drain what the doctor thought was an abscess, an infected lymph node. It wasn't. A biopsy diagnosed me with Burkitt's lymphoma (BL).
Everything happened so quickly after that. BL is a very fast-growing cancer, and early treatment is critical. So, I withdrew from Poly on a Friday and checked into Stanford Hospital on Monday. My first chemotherapy treatment was that evening. The pea-sized tumor in my armpit had grown to larger than a golf ball in a few weeks.
Chemotherapy treatment was aggressive over the next four months. It was difficult for me; I was very ill from the medicine. In the end, though, I was fortunate. The treatment was effective against BL. It took some time for me to regain my strength and stamina, but I was able to return to college that winter quarter (less than a year after my initial diagnosis). After two years of constant monitoring for signs of the cancer return, I was deemed in permanent remission. A few years later, I agreed to be enrolled in the Childhood Cancer Survivor Study, which is composed of individuals who survived five or more years after a cancer diagnosis during childhood or adolescence, as well as siblings of survivors to serve as a comparison group. So, for the last three+ decades, I and my three older brothers as a reference group have been subject to the occasional study survey and the like.
The goal of the study is to better understand the long-term effects of childhood cancer and its treatment. This information helps inform prevention strategies and follow-up needs. Over 50% of participants had a primary diagnosis of leukemia or lymphoma, so the study is very important to our own cause.
Overall, the research coming out of the study shows that survivors may face significant health problems, physical and mental, because of their treatment. Some problems do not appear until years after treatment is over. These are called late effects. For example, many survivors, 20 to 30 years after treatment, have problems that affect brain functions such as thinking, learning, and memory much earlier than would be expected. Another recent study showed that survivors have a persistent, if subtle, fear of the cancer returning, decades after treatment.
Again, though, despite the occasional worries about the future, I have been healthy since ending treatment so many years ago. And while I wouldn’t wish someone to have my cancer experience, for me, it was ultimately life-altering in a profoundly positive way. I learned so much about myself and life at a young age and how to appreciate the moment now, versus an unknown future. Today, I am healthy and happy, and grateful to be counted as a long-term cancer survivor.
Paul
Burkitt lymphoma (BL)
