Finishing Cancer Treatment Didn’t Bring the Relief You’d Expect

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!

Are you happy to be done with treatment? Are you relieved? I would feel this way, don't you? These are common questions posed to people who have completed cancer treatment and have been determined to be NED (No Evidence of Disease; remission, to non-medical people).

As a cancer survivor, this is an interesting question and far more nuanced than most people think. Five years ago, I was diagnosed with follicular lymphoma, a form of blood cancer that is considered very treatable but chronic and incurable. Thankfully, it is still in remission following treatment.

The questions above are a follow-on to other, equally well-meaning but still problematic assumptions. Because follicular lymphoma is so treatable (for most people; some people go through 2, 3, even 6 or more treatment modalities before one works, and for some, nothing works), one of the common responses is to ask if I’m happy I got such a treatable cancer. After all, it could be a lot worse! And it could, don't get me wrong, I am fully aware that I could have something far less treatable. On the other hand, I could have something curable, and in many ways, I’d prefer that. No matter what form of cancer it is, having cancer increases the risk of cancer — of the original cancer recurring, of other forms of cancer developing due to treatment, and so on.

So let’s go back to responses to completing treatment. Of course, people assume that completing treatment comes with relief, and in some ways, it does. But in other ways, it simply creates other, similarly intense concerns. People who have been diagnosed with cancer — successfully treated or not — are forever at a higher risk for recurrence. In general, we will spend the rest of our lives being monitored for a potential recurrence. It doesn’t matter how far out we go, there will always be a greater level of surveillance for us than for those who have never been diagnosed.

Here’s the thing: I will never be the same person I was before treatment, and my treatment, compared to a great many people, was pretty mild. I know someone who has stated, categorically, at the age of 26, that if her cancer recurs, she will let it take its course. Treatment was so painful and disruptive that she would rather die than experience it again. I’m nearly twice her age, and having watched her undergo treatment, I understand her decision. I would greatly have preferred to have never gone through this in the first place, and my treatment involved relatively little physical pain and even relatively little physical discomfort.

The emotional toll, on the other hand, was considerable. For example, I retired two years early because of the risks involved in returning to the classroom significantly immune-compromised during COVID. I can never get that back. Oh, I could return to teaching if I wanted to, but it wouldn't be the same; the gap can never be made up. I lost friends who couldn’t deal with my potential long-term illness or death. I made decisions that were significantly impacted by my emotional state at the time, some about actions I felt were necessary at the time, and some to avoid actions that I felt should be avoided. Would I have made the same decisions had I not had cancer? I’ll never know.

That brings me back to those questions people ask. Oh, some people understand; they’ve been there themselves, with cancer or with some other potentially fatal illness. Most people, however, have no idea what the emotional reaction to completing treatment for a potentially fatal illness is. Is there relief when treatment is successful? Some, yes, but there’s also a dawning, and often depressing, realization that nothing will ever be the same again.

Then, too, during treatment, I was focused on treatment. I wasn’t thinking about the future or what came next; I was too busy dealing with what was happening right now. When I finished treatment, all the changes that cancer had wrought in my life came crashing down, and depression hit because the focus of my life — which had been on treatment — changed, and there was nothing there to replace it. This is what people don’t understand: that life doesn’t just magically return to what it was before.

So when people ask those “obvious” questions, they have no real idea what they’re stirring up, no idea that asking those questions often makes the person asked feel like anything they feel is invalid. After all, they should feel grateful… right? Not. After all, why should anyone feel grateful for going through a physically, mentally, and emotionally painful experience? It’s a hard thing to explain, and trying to explain it is incredibly invalidating. Please don’t make assumptions about other people’s emotional responses. Just...please don't.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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