Fear of Cancer Recurrence

So, you’ve been through surgery, radiation, chemo. Almost to five years. Maybe even ten years. Your friends have stopped asking “How are you?” in that slow, drawn out way. Now it’s assumed that your worries are about your kid or you job or your weight. 

And it’s true you have new thoughts now and plans for the future. But still. But still.

You feel an ache, there is a bruise, a bit of swelling, a funny feeling. Your first thought is not, like most people, “Aging sucks.” Rather, your first thought is, “Is it back?”

The reality is that cancer can recur—in the same place or sometimes metastasize to a new place. So, we residents of CancerLand have this thing called FCR—Fear of Cancer Recurrence.

And it’s not just you: According to Susan Krigel, Ph.D. a clinical psychologist at the Midwest Cancer Alliance, 97% of cancer patients have FCR that lasts for years.

The good news: you’re not alone.

The bad news: you can feel scared a lot or crazy a lot.

And the probably news is that you’ll experience some anxiety.

Triggers will be different for each person. You’ll want to talk to folks in a support group. You may also want the help of a therapist who knows cancer. That’s a key question to ask: Does this therapist know the psychology of cancer and the dynamics of life as a cancer survivor. Note: Having had cancer does not necessarily make one expert. Having treated many people with cancer and understanding the dynamic may be a better qualification than having had cancer.

Humor helps too. You’ll need to test that first with family—they have their own fears about your cancer. But find a couple of people –friends or survivors—and invite them to be your FCR warriors. 

Do You Worry About Cancer Coming Back?

You may have discovered this: Most of your role as a cancer caregiver is, naturally, doing the daily care of your loved one—and of course, that brings up a lot of worry about that person. But this week a conversation with a friend brought me up short.

I was asking about her husband who has cancer and we talked about the usual—treatments and surgeries and money and family—all the parts of life that are touched by cancer. But then she said, “There’s something else”, and she looked very uncomfortable. So, I waited

and she said, “I’m worried about me.”

“We’re both worried that his cancer is going to come back”, she went on, “and we do talk about that, but what I can’t tell him is that I’m not sure that I can go through this again.”

Oh, I thought, “Oh, she is voicing the taboo.”

All of this I write about being a caregiver and dealing with the logistics of medical care, and the money, and the sex, but maybe I was missing what you might most need to talk about: the scary, uncomfortable, painful and awful-- often secret--truth, that we do not want to go through this again.

Part of it is that as caregivers we are in a secondary role: The patient is the lead and you, the caregiver, are the supporting actor. But we also get caught in our own “saint” game and can get trapped by being helpful and loving and we fall head over heels into the expectations that we will: roll with the punches; go with the flow; do whatever it takes.

But then, after the first round of cancer, after you come back to the surface, you might find yourself thinking, “I do not know if I can do this again.” 

You are not alone. Part of the stress is the timing. When cancer comes the first time we really don’t know a dam thing about what’s about to happen.

We read the pamphlets and go to support groups but we are caught up in the rapid current of cancer and treatment. We mostly just do everything because there isn’t time not to. The pace of care and the newness and the scariness and the constant adrenaline pushes us along. 

But after a period of time, maybe after you’ve had about a year out of CancerLand, a kind of subtle terror creeps in: What if cancer comes back? Then what? Now you know, now you have a sense of this exhaustion and fear, and in that way it’s harder because the adrenaline of shock isn’t there to help us. And it is also true that there is less help—from family and friends--when cancer goes from crisis to chronic.

So, I told my friend that she is not alone. And you are not alone if you had this worry. I have been there and truthfully, I still go there: “Could I do it again?” I probably would, and so would you. But having that secret feel like shame just makes it all so much harder.

No, I don’t want cancer to come back—for his sake and for mine. You don’t either. But I don't want you to have another layer of pain because you hate what cancer did to your good life.