How fear affects cancer survivorship

A recent Wall Street Journal article about how post-traumatic stress syndrome can be caused by cancer and stroke brought to mind the variety of responses many people experience in response to cancer diagnosis and treatment. The lingering intensity of those responses – physical, psychological, social and behavioral – can affect whether and how we attend to the tasks of survivorship; that is, monitoring and addressing the unique health challenges that follow treatment for cancer.

Sam, a friend of mine, told me that his anxiety is starting to rev up about his annual scan to check for a recurrence of his esophageal cancer. It’s early July. His appointment is in mid September. He doesn’t want to go. He will force himself to go. He will worry more each day as the test date approaches.

The sound technician for a recent talk I gave recounted how, 17 years after his radical prostatectomy, he insists on having his PSA tested every six months, despite the one-year interval recommended by the guideline. “From the time the blood is drawn to when I get the results I’m still a wreck.  And in between tests, my worry is like a pebble in my shoe. It’s small, but it’s always there.”

Some of us are able to approach our survivorship care as just the next few necessary chores. Others have had enough of the cancer experience by the time we have finished treatment: we refuse to participate in any monitoring or testing at all.  Some of us – like Sam – muscle through: constantly surfing the waves of worry.

And some of us take matters into our own hands. Like the sound technician above, we insist on surgery or medication now or we demand more frequent testing than is recommended. We devise our own dietaryphysical and mental regimens and employ a range of alternative medicine approaches – sometimes substituting them for standard medical approaches – in an effort to reduce our apprehension and to reclaim some sense that we can control our future.

I wish I had known earlier that a strong emotional response to cancer treatment is fairly common.

I recall becoming nauseous at the prospect of walking into a hospital (any hospital!) and the build-up of crushing fear in the days before getting a simple PAP test. At first these responses kept me far away from any follow-up care. Then when my fear of a recurrence exceeded my fear of testing for a recurrence, I found myself panicking prior to every check-up, every test. I believed these were rational responses to the highly toxic, aggressive treatment and callous care of an adolescent surprised by a diagnosis of Hodgkin’s lymphoma and the threat of impending death at age 19.

I wish I had known earlier that there was no need to suffer so much or so long from these lingering fears.

Talking with others who experience similar anxieties might have made it seem more normal. A behavioral intervention by a mental health professional could have drained some of the anxiety.

As control of pain and nausea become more effective, perhaps fewer of us will experience such responses. But the effect of a cancer treatment affects each of us differently. Increased recognition by our clinicians of its potential impact and help finding effective approaches to accommodating our new reality can help to calm the waves of emotion that get in the way of returning to the lives we love.

Cancer treatment can affect physical, emotional, cognitive, social, behavioral and occupational aspects of our lives. Survivorship care by definition is care of the whole person.

It sometimes takes my breath away that my own fear could easily have stood in the way of the discovery and treatment of my four subsequent cancers.

I wish I had known earlier how easy it would be to undermine the possibility of benefitting fully both from the treatment I received and the recommended monitoring and testing because I couldn’t see that I needed help with my fear.

Jessie Gruman is the founder and president, Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient blog.

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