In 2015, more than 1.5 million Americans were diagnosed with cancer. Around forty percent of those new diagnoses were in three types of cancer — breast, lung, and prostate — so it’s no surprise that those are the ones you hear about most often. But hundreds of thousands of new cancer patients each year are diagnosed with less common cancers, some affecting only a handful of patients a year. These are the diseases you don’t often hear about.
Before a few months ago, I have to admit that I didn’t know anything about cutaneous T cell lymphoma (CTCL). Each year, just a few thousand adults in the U.S. are diagnosed with the cancer, which often starts as an itchy, scaly rash — not the first thing that comes to mind when you think of classic cancer symptoms. Most people first learn about CTCL when they, or someone close to them, is diagnosed. I, on the other hand, started investigating it because I was writing about Stanford’s Cutaneous Lymphoma Group, which is spearheading research and new treatments of the disease.
At the same time, I was researching metastatic melanoma, the most advanced form of the skin cancer. While melanoma of any variety is relatively common (almost 75,000 new cases a year in the U.S.), only four percent of new diagnoses are the most severe, metastatic type. To understand both CTCL and metastatic melanoma, I spoke to patients being treated at Stanford clinics, doctors who specialize in the diseases, and researchers who study the cancers at the most basic molecular and genetic levels.
Science writers and scientists alike often justify research on rare diseases by explaining how we can learn about more common conditions through studying less common ones. But hearing about melanoma and CTCL — and how findings in the lab quickly trickle up to change clinical practice and save patients’ lives — it became ever clearer to me that research on these rarer cancers has an immeasurable impact all on its own. The clinicians I talked to were all avid proponents of integrating the latest research into their practices as soon as they could, and constantly tweaking their protocols to find the best ways to help patients. And each patient was able to get a new lease on life thanks to clinical trials and scientist-doctors willing to try new things.
Sarah C.P. Williams is an award-winning science writer covering biology, chemistry, translational research, medicine, ecology, technology and anything else that catches her eye.
Previously: This summer's Stanford Medicine magazine shows some skin, Gene-sequencing rare tumors – and what it means for cancer research and treatment, A rare cancer survivor’s journey to thriving and advocating, Humble anti-fungal pill appears to have a noble side-effect: treating skin cancer and Raising awareness about rare diseases
Illustration by Matthew Bandsuch