Surviving Cancer Survivorship

If I’d known how it was going to be, I wouldn’t have done it,” the man sitting in front of me said, shaking his head slowly.

I was sitting in the patient resource center at the cancer hospital, waiting to talk to someone, and I’d attempted to strike up a casual conversation with the man, who was obviously a patient—or had been.

Cancer patients learn sooner or later that queries about how we’re doing eventually become polite formalities, not sincere requests for information. For most of us, it takes some awkward exchanges with others before we learn to shade the truth, tell a partial truth—or even outright lie. When we do this, no matter what our actual circumstances, it makes those around us feel better, and this in turn helps us to stay connected to them rather than making them shy away from us in mute, frustrated helplessness. It becomes a mutual conspiracy of silence.

But in the safe confines of the resource center, a frank answer to this question obviously seemed in order. The man had had a head and neck cancer, he told me. He’d finished treatment several months ago.

“Oohhhh,” I exclaimed softly. “My cousin was diagnosed with that shortly after I was diagnosed with inflammatory breast cancer. The treatment for head and neck cancer is not easy. It’s a hard one.”

“It is,” he said. “And I tell you what — I’ll never do it again. Knowing what I know now, I won’t do this again. They don’t really tell you about everything up front. It better have worked this time, because I’d rather die than do it again.”

“I understand,” I said, my eyes filling with a few tears. “This isn’t an easy thing to go through. Cancer treatment is not for sissies.”

I hope he survived. Not just the cancer, but the after-effects of his cancer treatment as well. Cancer survivors in general, it turns out, have double the risk of suicide when compared to the general population. A study published in the December 2015 Journal of the American Medical Association reveals that the rate of suicide among head and neck cancer patients is three times the rate for the general population. Interestingly, most of these suicides tend to occur within the first five years after diagnosis—that magical, if arbitrary, time frame beyond which medicine calls you “cured.”

It gives a body pause, doesn’t it? As a cancer patient, you look to that five-year survival mark and dog paddle furiously through life in an effort to reach it and claim the mantle of “cure” for yourself. So, what happens to the folks who decide it’s not worth the effort to dog paddle anymore? What is it about being a cancer survivor that’s so bad?

Maybe most of these unfortunate souls are people with terminal diagnoses who choose to end life on their own terms, not on cancer’s terms. I know a few people who chose that route. But I don’t know many, which makes me doubt that this explains all of the suicides.

So, what is it about being a cancer survivor that’s so bad? You can find out a lot by simply asking, “How’re you doing? I mean, really….”

Cancer survivors pay a daily price for the privilege of being alive—even if it’s been years since our treatments ended. The more heavily we were treated, the higher the price we tend to have to pay. Other people get tired of hearing about this price, when they ask us how we are, so we learn to just be quiet about it. But it’s real, and among ourselves, we talk.

A couple of years ago I decided to try to quantify one of the things we talk about—our quality of life, or QOL. I asked two groups of cancer survivors about their QOL. One group consisted of 75 people with metastatic breast cancer—women (and a few men) who must remain in treatment constantly in order to stave off the time when those murderous little cells will achieve their ultimate victory. The other group consisted of 55 women who are at least one year out from having finished treatments for inflammatory breast cancer, which is highly aggressive and thus gets really heavy-duty treatment—chemo, surgery, radiation, the works.

I asked both groups to compare their QOL now to what it used to be before cancer. In the metastatic group, almost half (48 percent) said that their QOL was at least 70 percent as good, even though they were in constant treatment. I didn’t think this was bad, considering what patients with metastatic cancer go through.

Surprisingly, the IBC group reported almost the same thing—a little more than half (56 percent) said that their QOL was at least 70 percent as good. Coming from people who were no longer in treatment, those numbers were not as impressive. One popular myth about survivorship is that after a year or so, you should be recovered from all of the negative effects of your treatments. But if this were true, you’d expect more IBC survivors than this to report a higher QOL.

I suspect one reason so many cancer survivors take their own lives in the first five years after treatment is because it’s not really over when it’s “over.” I’m not just talking about the psychological effects of having had a cancer diagnosis and going through treatment, although those can be pretty significant. I’m also talking about the million and one little things that cancer treatment can do, long-term, to the human body to limit its functionality and increase its discomfort.

Most of us survivors feel lucky to still be alive—at least, most of the time! We say, philosophically, that our persistent treatment after-effects are just the price we’ve paid to be alive. And we’re grateful every day to have that opportunity, when so many cancer patients don’t get the chance to suffer long-term side effects.

But for some of us, clearly, the long-term cost of being alive is too much. My cousin seems to be doing well so far. I hope the same is true of the man I met that day in the resource center.