Watch and wait: When cancer treatment seems to mean doing nothing

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Watch and wait. That’s often one of the new terms added to your vocabulary when you’re diagnosed with cancer. Or maybe it’s wait and watch. Or active monitoring. Whatever it’s called, sometimes it’s the term used when there’s nothing to do to treat your particular cancer but wait.

That’s a hard thing to do, most doctors will tell you. The natural reaction to a cancer diagnosis is a desire to do something, anything. Melt it. Burn it. Radiate it. Drug it. Remove it. Attack it. Just get the cancer out of you.

Michael Buller

"Once you've been told you have cancer, there's no putting the genie back in the bottle."

Because by doing something, you feel in control. When you watch and wait, you’re doing nothing. You get your scans and bloodwork. You visit your oncologist and look for signs of the disease progressing. But you’re not attacking your cancer; you’re waiting for it to attack you.

You’re not in control.

For anyone with even a modicum of control freak in them, that’s a hard position to be in. Yet it’s where I found myself when I was diagnosed with follicular lymphoma last June. The best course of action wasn’t to treat it immediately; it was to watch and wait. I wanted to run and hide. And for a few months, that’s what I did.

Beyond a very close group of friends and family, I didn’t talk about it. Why should I? I felt fine (and still do) and if it weren’t for being told I have cancer, I wouldn’t know it.

Watching and waiting complicates the whole “who-do-you-tell” process. Physically, there’s nothing different about me; I have no symptoms, no tell-tale signs of treatment or disease. In some ways, that made telling friends more shocking; it made the telling seem very out of context — a “sit-down-I-have-some-news” event.

Now I’ve begun talking about it more with a wider circle of friends. Beyond the shock, the reaction is usually focused on the watch-and-wait approach and it falls into one of three categories. There’s relief, as in, “Oh, if they’re not doing anything, it must not be that serious.” There’s confusion: “What? You know you have cancer and you’re doing nothing?” And there’s anxiety: “Oh, that must be so hard.”

How people react, I think, is more about them and how they approach the world than it is about me, but that’s another post.

Here’s the thing, though. Watching and waiting is no more stressful than any other treatment plan; it may not even be more anxiety-laden than being declared cancer-free.

Worry comes with any diagnosis, and learning to deal with that — however you decide to deal with it — is one of the mental challenges patients and survivors face.

Once you have a cancer diagnosis, you’re always going to be in a watch-and-wait mode, whether you were diagnosed 10 months or 10 years ago. Once you’ve been told you have cancer, there’s no putting the genie back in the bottle. You’re always hoping for a clean scan, for good bloodwork.

And I have to think you’re always watching with at least some degree of worry for signs and symptoms. Am I tired from lack of sleep or evidence of disease? Does my lymph node feel like it’s growing?

That may sound ominous but really, is it any different than what we all go through, whether or not we’re cancer survivors? We’re always monitoring our health, unconsciously or consciously, watching for signs of something. Now, at least, I know what I’m looking for.

And while I may be the only one waiting, I take mental comfort in that I have a tremendous doctor and a team who’s watching with me.

Michael Buller is the director of Editorial and Creative Services (and a patient) at Dana-Farber Cancer Institute.

3 comments

  1. Cindy Lasselle says:

    Thank you for sharing your story. I am also in the watch and wait stage, people have a hard time believing me with stage 4 Non-Hodgkin’s Lymphoma that they are not going to treat it. I feel fine and go every 3 months for blood work. Keep your stories coming. Thanks Cindy

  2. Michael Buller says:

    Thanks Cindy.
    I hope we’re both watching and waiting for a LONG time.
    –michael

  3. Saul Wisnia says:

    A very powerful piece, Michael. Thanks for sharing your wisdom. I was particularly moved by this statement: “Once you’ve been told you have cancer, there’s no putting the genie back in the bottle.” There may be millions of survivors, but each is always wondering what the future brings. Learning to keep a positive, productive outlook is the key to keeping the genie at bay, even if the bottle is off-limits.

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