Challenging Cancer Stereotypes While Living with Follicular Lymphoma

Karen Cohn is a retired middle school special education teacher who was diagnosed with follicular lymphoma in July 2020. Catch up on all of Karen's blogs here!

There are many preconceptions about cancer, even among patients with cancer. I have follicular lymphoma, a form of blood cancer that is considered highly treatable, but also chronic and incurable. Blood cancer is different than many other forms of cancer, in that there is not usually a single tumor, because it spreads in and through the blood, so even early stages can be in multiple locations — something even many people with other types of cancer aren’t aware of. I met a woman with liver cancer, which had been treated, in part, with surgery, and she asked what type of surgery I’d had for my treatment; she was shocked to learn that I hadn’t had any.

This entry was triggered not by that, but by an article in the New York Times, about a doctor who teaches medicine at Stanford University. When he was diagnosed with cancer, he chose to continue working, and to discuss the process of dealing with terminal lung cancer (he was given two years to live) with his students, rather than retiring immediately. He was placed on a treatment regimen, which included chemotherapy, which, in his case (as well as many others) caused mouth sores. His response? “Day in the life of a cancer patient,” as he said in a video diary he began after his diagnosis, according to the Times.

Here’s the thing about that: it’s not something every patient with cancer experiences. I have no idea how many patients with cancer do experience such sores; I am happy to say that I wasn’t one of them, much to my dentist’s pleased surprise.

The chemotherapy regimen I underwent is mild, as such things go, and I didn’t lose my hair — well, not all of it; it thinned a little around the hairline, but it wasn’t particularly noticeable — which is normal for this particular form of chemotherapy. I only noticed because I was looking for it, and because extra hair shed when I combed my hair in the shower. But an amazing number of people commented on my keeping my hair, and a few even asked how I got such a wonderful wig; everyone who knew I had been given chemotherapy just assumed I would have gone bald.

A friend whose daughter had undergone treatment for osteosarcoma (bone cancer) bought me extra trash cans and scented liners because she knew, from her daughter’s experience, that I would be vomiting a lot. But I wasn’t. I was given a different chemotherapy medication, which, as I said, was milder, and between that and an anti-nausea medication, I was never nauseous.

Even an advocate for a blood cancer organization seemed shocked that I wasn’t undergoing maintenance treatment (ongoing immunotherapy treatments intended to keep cancer from recurring, which some patients with blood cancer don’t do at all, some do for a limited period of time, and some do indefinitely), and this is a person who advocates for patients with blood cancer with health care providers and lobbies for coverage with legislators.

I was off work during treatment; it was the second half of 2020. My oncologist wasn’t sure what would happen if I caught COVID during treatment, and since I was a middle school teacher, the risks were high. When I returned to work, most people were surprised that I looked, well, normal — I had not gained or lost enough weight to look obese or emaciated, which was what most people were apparently expecting.

My point, I suppose, is that there’s no “typical” patient with cancer, something that not even medical doctors teaching other medical doctors know. If you know someone who has been diagnosed with cancer, take them as they are, just like you would anyone else; please don’t lump them into a stereotype of what a patient with cancer should be, because you could be right, but there’s a better than reasonable chance you’ll be wrong, no matter what you think you know.

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