How to Deal with the Fear of Cancer Coming Back

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“How will you know if my cancer comes back?”

“When will I have a scan?”

Fear of recurrence is the most common concern raised by cancer survivors. Having just completed sometimes months of grueling treatment, patients regularly ask me when, where, and how I will determine if our treatments worked and if cancer is coming back.

The transition from weekly or even daily appointments with your medical team to monthly visits can be jarring. One patient shared that he felt like a “sitting duck” not seeing me every week. These are normal and natural feelings—and the truth is we don't know if or when someone's cancer will recur.

Dealing With Uncertainty

Imagine that you've done everything you were able to do to treat your cancer and now the rest is somewhat out of your hands. This is undoubtedly a difficult feeling.

In my experience, however, it seems to be strongest in the first year after treatment and fades with time in most patients. Upcoming appointments, scans, or a loved one's diagnosis or death are common triggers for anxiety related to cancer returning. Some survivors refer to it as "scanxiety."

We inhabit a world of uncertainty and the transition from active cancer treatment to survivorship is an enhanced time of uncertainty. A new job, a public speaking event, a teenager with a new driver’s license—all of these are experiences with some level of uncertainty.

I find that it is helpful to remind patients of the uncertainty they have faced before and to think about what helped them through those moments. For my patient who said he felt like a “sitting duck” now that he wasn’t undergoing active treatment, he found it was helpful for us to take a moment to review all of his treatments. He saved this in a note on his phone. That note was a ready reminder when fear came calling of all he had done to ensure the best outcome.

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Talk to Your Cancer Team

Ask your cancer provider “Is there anything I can do to prevent this cancer from coming back?” Sometimes there is and sometimes there isn't. Discuss what you can control and the plan for monitoring your cancer. This can include blood markers, physical exams, or scans. Write down your concerns before your appointment and check in with people close to you about questions they have to be sure you make the most of your appointment.

Side Effects and Signs of Cancer Recurrence

It is also important to tell your provider about any lingering side effects from treatment. Are they getting better, getting worse, or staying about the same? Are they interfering with activities you would like to do? Are they bad enough you would want to see a specialist or take medicine?

You are still a human, so you are susceptible to the same head colds and arthritis as the rest of us. A good rule of thumb is to tell your cancer team about any new or worsening symptom that lasts for over two weeks, interferes with your daily activities, or that you must take medicine regularly to manage.

Don't be afraid to say "I'm worried that this may be a sign of cancer coming back. What do you think?" Your provider can then determine the next steps to investigate or provide reassurance.

As you move into survivorship, you may feel vulnerable and uncertain. These feelings are normal. Talk to your provider about these feelings and his/her plan for monitoring for cancer recurrence. Notice changes in your body and discuss those with your provider. Remind yourself of everything you did to treat your cancer and ask your provider if there is anything further you can do to help prevent cancer from coming back. These conversations can help ease your mind and allow you to rejoin your “normal” life.

Want more information? Check out this podcast by two-time cancer survivor and licensed clinical social worker, Hester Hill Schnipper.