Remission is Not a Cure for Follicular Lymphoma, or Any Cancer

From a medical perspective, remission means a period of time during which the symptoms of a disease disappear; it most emphatically does not mean “cure”, which is the way it is often used by people who have never experienced an incurable illness. Even injuries may be described as being in remission; no matter how well healed, indications of the injury may come back years, even decades, later — that “weather-wise ache” in a long-healed broken bone, for example.

In June 2020, I was diagnosed with follicular lymphoma, a form of blood cancer that is considered highly treatable, but chronic and incurable. I underwent treatment that successfully led to remission (more commonly called No Evidence of Disease — or NED by oncologists) during the second half of 2020, but in many ways, it’s still with me.

First, blood cancers, by their very nature, are hard to eradicate; there is often no tumor to remove, and since blood goes everywhere in the body, treatment has to go everywhere in the body too; even one missed, mutated cell can lead to a recurrence in the future.

Second, because of that, I still see my oncologist every six months; in fact, I need to call today to schedule my next appointment, because I’m due to see him in three months, and the oncology center is busy. They open the scheduling calendar for three months at a time, so routine appointments need to be made well in advance. Every other appointment (the one in mid-winter) I also need to schedule a CT scan — which needs to be done as soon as my oncologist approves it, usually at my mid-summer appointment — so it’s always on my mind in some fashion.

As I approach the five-year mark — yay! I can only hope that results continue to be negative — that I am still NED — because successive types of treatment tend to be harder to endure. I have no reason, on this bright spring day, to expect that it will be anything else, but I also know that I had no symptoms until a month or so before diagnosis, and my oncologist’s estimate is that the lymphoma had been growing and spreading (it was pretty much everywhere) for 5 to 10 years before that.

And yet, so many people who haven’t dealt with cancer, or other incurable illnesses — and even some who have — don’t understand how fear of relapse can always run lightly in the background, or sometimes not so lightly. For the first year, most cancer patients get checked every two to three months, then every six, and finally, after five years (if they get that far without relapse), annually. That need for regular check-ups, above and beyond the annual physical that so many people don’t get anyway, tends to keep your attention on the risk of recurrence. That makes it hard to move on and let go — advice that my friends give me, and that they often don’t understand why I can’t take.

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