The Unseen Long-Term Effects After Follicular Lymphoma Treatment

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!

So many people believe that patients with cancer who finish treatment successfully are cured — although many of us are not. And no one really thinks about the aftereffects of cancer treatment except those who have been through it and the medical personnel who provide ongoing care.

I have follicular lymphoma, a form of blood cancer that is considered very treatable, but chronic and incurable. I will be monitored for recurrence for the rest of my life — and I am hardly alone. Cancer treatment is, itself, a risk factor for cancer; the medications used are toxic, if often less toxic than they were in the past, and the impact of those medications on the body can have long-lasting effects. Newer research into cancer suggests that cancer is, at its base, a malfunction of the immune system, and it is the immune system that is often most impacted by cancer treatment. This can lead to long-term effects that can cause changes in blood values and can also make the person more susceptible to illness.

There are weird little issues that come up with the medical aspects. At a visit to the dentist several years ago, when the impact on my immune system was still unclear, the hygienist (a substitute, not one of my long-term dentist’s usual staff), was wearing her face mask below her nose, so I asked her to put it on properly. She objected and claimed to not know that the nose and mouth were connected – a bigger problem than just her lack of interest in wearing her mask properly. When I told her I was a patient with cancer, she asked what kind; I told her I was in remission, and her answer was “Well, then, why does it matter?” This was a lack of information and empathy that I have, thankfully, rarely encountered in medical personnel.

Then there are the social aspects, which, in many ways, have a greater impact than the medical ones. Before I was diagnosed, I lost a significant amount of weight (about one-sixth of my body mass) in only two months — what I know now is a symptom of active cancer, and, in my case, the first symptom to appear. People around me congratulated me on the weight loss, while I tried to figure out what was going on. Once I was diagnosed, no one knew quite what to say. Over the four years since I completed treatment, I’ve slowly regained that weight. I’d like to lose it again, but it’s hard, psychologically; if I lose any weight and don’t know why, it triggers concerns that the cancer might be back, even if I have no other symptoms.

In addition to the social aspects of this one, my primary care doctor — who is not the one who diagnosed me — has mentioned I might want to lose weight, and it triggered all sorts of emotions, to the point that I couldn’t even suggest to her that she check my records.

These are some of the aftereffects I’ve experienced — by no means inclusive of all the weird things that people who haven’t had a serious illness don’t think about as aftereffects or even related to illness. Please remember that cancer — even cancer that can be definitively cured — is a lifelong journey.

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