I WISH I HAD KNOWN EARLIER…HOW FEAR CAN GET IN THE WAY OF CANCER SURVIVORSHIP CARE

By Jessie Gruman

April 2, 2014

A strong emotional response to cancer treatment is common, but I didn’t need to suffer so much or so long from my fears.

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 after 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 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 dietary, physical 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’d 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 20.

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 diagnosis and treatment of cancer affects each of us differently. Increased recognition by our clinicians of their potential impact, and help finding effective approaches to accommodating our new reality can 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’d known earlier how easy it would be to undermine the possibility of benefitting fully both from the treatment I received and ongoing monitoring and testing because I couldn’t see that I needed help with my fear.

This post is the second in a series about lessons I have learned over the years about the unique needs and responsibilities of those who have been diagnosed and treated for cancer.  The series explores what it takes to find the right health care and make the most of it as part of our effort to live as well and as long as we can.

If you have been diagnosed and treated for cancer, I invite you to join me in this summer project. Interested in writing a blog for this series? Get in touch. Have a response to mine or others’ insights? Please comment.

Whether you get itchy when someone calls you a “cancer survivor” or you enjoy the extra love that comes with the term, join me in sharing with others the hard-won lessons you have learned over the years about what it takes to find the right health care and make the most of it as part of your effort to live as well and as long as you can:

• Part 1: What I Wish I’d Known Earlier about Cancer Survivorship
• Part 2: I Wish I Had Known Earlier…How Fear Can Get in the Way of Cancer Survivorship Care
• Part 3: I Wish I Had Known Earlier…Not Every Oncologist Can or Should Deliver Survivorship Care
• Part 4: I Wish I Had Known Earlier…For Many of Us, Symptoms and Late Effects Accumulate Rather Than Fade Over Time
• Part 5: I Wish I Had Known Earlier…To Cast a Cool Eye on Prognostic and Risk Statistics
• Part 6: I Wish I’d Known Earlier…I Still Need a Primary Care Provider Since Most Headaches Aren’t Brain Tumors
• Part 7: I Wish I’d Known Earlier…Survivorship Care Is a Mutual Enterprise
• Part 8: I Wish I’d Known Earlier…Each New Diagnosis Has Unique Demands
• Full series and posts by other cancer survivors

Original blog post by Jessie Gruman. Updated by the GW Cancer Institute June 2016.