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I Wish I Had Known Earlier...How Fear Can Get in the Way of Cancer Survivorship Care

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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:

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman


Tags for this article:
Cancer   Inside Healthcare   Make Good Treatment Decisions   Jessie - Cancer Survivorship Series  


Comments on this post
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Susannah Fox says
July 18, 2013 at 12:43 PM

Thank you, Jessie, for sharing this wisdom. Bravery comes in many forms and knowing we can draw on others for strength is essential.

Carolyn Thomas says
July 22, 2013 at 11:00 PM

Hello Jessie and thanks for this series. Such important observations and not only for cancer survivors - but for anybody who has had to lie there, waiting, helpless and anxious in that drafty hospital gown...

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

My take on this is that knowing earlier would do little to change those overwhelming feelings you experienced at the time. Those were the normal and natural reactions to a catastrophic diagnosis.

What could have changed was more comprehensive care, not just for the little bits that oncologists and other specialists are focused on. Why are we still needing to explain to the medical profession that a serious health crisis isn't merely an organ recital, but needs to be addressed with, as you say, "care of the whole person".

Thanks for doing your part to educate them.

Marie Ennis O'Connor (@JBBC) says
July 23, 2013 at 7:15 AM

Jessie your post underlines for me how important it is to leave hospital with a cancer survivorship plan in place - one that would prepare survivors for both the physical and the psychological signs and symptoms to watch out for in the coming months and years. The issue for many cancer survivors is that they are hardly ever prepared for the complicated emotions that face us after treatment ends - emotions which include fear, anxiety, guilt, sadness, and depression. Knowing, as you say that this is a part of coming to terms with a life-changing event would go a long way towards normalizing the experience. Knowing when and where to seek help is a vital part of the survivorship plan.

Debra Madden says
July 28, 2013 at 6:26 PM

Jessie, thank you so much for writing this important series. You're absolutely correct in that cancer survivors have unique needs, concerns, responsibilities, and challenges--and this very much includes the risk of developing late effects secondary to our treatments. I was also diagnosed with Hodgkin's lymphoma as a young adult, at the age of 22 yrs. Because it was stage 3 and the disease burden was so bulky, I had 8 cycles of chemo (ABVD/MOPP) as well as 6 weeks of radiation. In the years since, I've gone on to develop several serious late effects, including severe coronary artery stenosis and blockage in my 30s as well as a second cancer diagnosis at the age of 42: this time, stage 2 breast cancer. Jessie, like you, I've learned many crucial lessons, including the need to be my own strongest advocate. And since my breast cancer diagnosis, I've also become an active cancer research advocate and Patient Representative, with a very strong focus and concern regarding cancer survivorship issues. My advocacy efforts include serving as a grant reviewer for the DoD's Breast Cancer Research Program, a reviewer and stakeholder reviewer mentor for PCORI, and an FDA Patient Representative. Most recently, I've jumped into the blogosphere with a new blog called "Musings of a Cancer Research Advocate" (www.draemadden.wordpress.com), and I'd be honored and delighted to write a blog posting for your series. Take care, be well, and thank you again for establishing this series on such a critical area!

My best,

Debra M.
Blog: "Musings of a Cancer Research Advocate"
Twitter: @AdvocateDebM
Email: draemadden@gmail.com

Brenda Denzler says
August 1, 2013 at 9:44 AM

Jessie, I enjoyed this piece, and I am intrigued by your offer to let others contribute blogs to your summer project. In October 2008, I decided not to buy a cancer rider for my health insurance policy because it only covered "cut, burn and poison," and I KNEW that if I ever got cancer, I would treat it holistically...not with cut, burn and poison. I'd help my body heal itself. So there was no point in paying for a policy I'd never use. Besides, I was "low risk" for breast cancer, all the on-line risk assessment tools said. And presumably for most other kinds of cancer as well.

In June 2009, I was diagnosed with inflammatory breast cancer, which is a rare and aggressive form of BC. I am now thoroughly cut, burned and poisoned. Oh...and alive.

I have been thinking for quite some time about all the things I wish I had known earlier about cancer. What it really is. How it works. Why treatments are the way they are.

I have come to think that we need a "cancer awareness" module for all middle school and high school students in some class or other that they have to take, so that the general public will have a better understanding of the beast--and so that they will be able to more intelligently contemplate the use of alternative treatments.

I am *not* against alternative treatments. However, I think that those who use them often betray a shocking lack of understanding of the disease of cancer, and they make decisions based on that ignorance.

For instance, I recently went to a public lecture by a woman who says that in the last decade or so she has "cured" herself of breast cancer three times! I was unimpressed. She didn't know her hormone status, thought estrogen receptors and HER2-neu receptors were the same thing, and had very clearly NOT cured herself of cancer at least twice, since it came back. (Jury is out on this last "cure," as it is only about 9-12 weeks old.) And she has wiped out her family's retirement savings and net assets in pursuing all of these alternative treatments she's used.

Another friend got breast cancer, did one chemo and had a rough time with it, and decided that the energy healing work she and her husband had done for decades, combined with a dietary protocol borrowed from an alternative Carribbean cancer clinic would be her approach. She died a year later, and she and her husband were in denial that she *was* dying, despite a rock-hard breast, eaten up with tumor, until a week before she passed.

If people are going to do alternative treatments, they at least need to go in with their eyes more wide open about the nature of the beast they are preparing to battle. I don't know tons about it, but I know a lot more than I used to! Gaining this knowledge was hard, especially when I had to do so "on the fly," as I was facing a life-and-death health crisis. I wish I had known earlier.....

If I can contribute to your summer project, please let me know.

Brenda Denzler
Email: denzler@hughes.net