6 Things I Have Learned About Watchful Waiting

In January 2008, I was diagnosed with follicular lymphoma (FL), an indolent (slow-growing) form of non-Hodgkin lymphoma. After all of the blood tests, the bone marrow biopsy, and the scans, my oncologist and I decided on a path: watchful waiting. Because I was not showing symptoms, I could hold off on active treatment. I was able to watch and wait for twenty-four months after I was diagnosed, until physical symptoms made treatment necessary.

Some patients call it “watching and worrying.” It’s natural to want to get rid of cancer, so delaying treatment seems unnatural. It can be a difficult choice to make, and the anxiety usually doesn’t stop even after the decision is made.

Here are 6 things I have learned about watchful waiting, from my own experience, and from sharing experiences with other FL patients who made the same decision.

Cancer is an emotional disease, not just a physical one

Watchful waiting is an option that is typically based on physical symptoms. If there are none, then watchful waiting can be appropriate, since delaying treatment can help maintain quality of life. But cancer patients have emotional symptoms, too: anxiety, stress, fear, worry. Those emotional symptoms need to be factored in to the decision. There’s no point in delaying treatment, trying to maintain quality of life, if that quality of life is destroyed by anxiety and fear.

Cancer treatments can be hard to accept

Someone told me this soon after I started watching and waiting. It’s hard to accept that a cancer does not have to be fought aggressively, right away. Soon after I was diagnosed, my wife told me she wanted to reach into me and pull the cancer out, and I felt the same way. But for many, that worrying starts to diminish after about 6 months (maybe a little longer), as we realize that we still feel OK, and we are more at peace with our decision and with ourselves.

No symptoms, no worries

There are two basic ways to deal with watchful waiting, and this is the first: Put the disease out of your mind. When my previous oncologist asked me how I wanted to handle things, he told me that many of his FL patients didn’t want to know any more about their disease than they had to. No symptoms, no worries. That works for a lot of people.

Knowing treatment options

This is the other approach, and the one I have taken. Personally, I can’t not think about it, and I’ve thought of it every day. I use it as incentive to stay healthy. I read and write about my disease, to help other patients, but mostly to help myself. I like feeling informed when I have conversations with my doctor, and I like knowing what my treatment options are when I need one.

Talking can help

Our emotional and mental health suffers when we keep things inside. Fears can be eased by talking – to a partner, a friend, a caregiver, a support group, a doctor. Talking (and listening) helps us see other perspectives. The worst period of my life came a few weeks after I started watchful waiting. It was only after I started talking (to my wife) about how I felt that things got better.

You can change your mind

The decision to watch and wait comes at a difficult time, soon after diagnosis. Once the decision is made, those initial fears should ease after a while. But sometimes they don’t, and the feeling of “needing to do something” just never goes away. And that’s OK. Even if a doctor told you watching and waiting was a fine choice based on your lack of physical symptoms, your emotional symptoms might tell you otherwise. A good doctor will pay attention to your emotional symptoms as well as your physical ones, and agree that it’s time to change strategies and begin active treatment.

There’s no one-size-fits-all when it comes to treatments. For some of us, watchful waiting makes sense, and it works. For others, immediate treatment is a better option, whether for physical or emotional symptoms. Talking to your doctor and understanding your options is the best thing you can do.

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