Through blogs and comments, patients and experts explore what it takes to find good health care and make the most of it.

I Wish I Had Known Earlier...That For Many of Us, Symptoms and Late Effects Accumulate Rather Than Fade Over Time


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Sara was treated for multiple myeloma in the mid-90s and had a stem cell transplant seven years ago. When I asked her husband how she was doing, he said, "Pretty well... just the gift of a little edema in one arm and some neuropathy in her feet."

On one hand you think, "Hey! That's great! Those little gifts — those side effects — are a small price to pay." On the other hand, seven years of edema and neuropathy for an active hiking enthusiast are nothing to sneeze at.

The side effects of cancer treatment sometimes fade but can become permanent glitches — disturbing symptoms whose impact we try to mitigate and whose presence we attempt to accommodate.

If you know someone who was treated for cancer in the 1970s or 1980s, you might be aware of the effects of early, very aggressive treatments that have emerged over time: the stooped shoulders, weak neck muscles, heart ailments, swallowing difficulties and secondary cancers that accrue to what is now known to be excessive radiation treatment. You can also imagine that the long-term risks of many of today's newest cancer treatments are as yet unknown.

As evidence builds from the long-term follow-up of people treated in clinical trials in the latter part of the last century, knowledge about the risks of those outmoded treatments has become more systematized. "Oh, this is classic in Hodgkin's patients treated in those days," remarked a rehabilitation physician when examining my weakening back muscles. "We see it starting anywhere after 20 years post-radiation treatment."

You know the evidence is gathering about your disease treatment when its late effect profile includes the term "classic." You also begin to hope that new, more effective and less risky treatment approaches are being developed.

For a long time, I believed that cancer and the effects of its treatment were containable, that the tincture of time would minimize their impact on the length and quality of my life. I thought that survivorship care consisted of regular testing to see whether I had a recurrence or a new primary cancer. My imagination accorded little space for the compromises in physical, cognitive or social functioning that become more pronounced over time or that burst into existence as I age due to either my cancer diagnoses or their treatments.

I don't wish that I'd known about the full, exciting range of diseases, disorders and disabilities for which I am now at risk. It wouldn't have mattered anyway: Denial is my favorite defense and I no doubt would have deployed it efficiently.

I do wish, however, that I had had a more fulsome orientation to the trajectory and value of survivorship care. I think it would have been helpful to understand that the symptoms and late effects for many cancer patients often accumulate over time, rather than fading to nothing. It is not only the fact that I have had cancer but the particulars of my treatment that increase my risks. If I understood this, I would have placed greater value in working with clinicians who view new symptoms and conditions through the lens of cancer survivorship, rather than independently occurring phenomenon.

Of course, not every person who has been treated for cancer would find this orientation worthwhile. Many people are treated for early-stage cancers — some of which may soon not even be identified as cancer — and they will live out my naive idea of how this should work... the tincture of time, the fading of the effects of surgery and minimal chemotherapy or radiation. For them, survivorship care is a matter of vigilance for five years post-treatment before fading back into the risk profile of the normal population.

For the rest of us, from childhood survivors on up, settling into the notion that cancer diagnosis and treatment are "gifts that keep on giving" requires a long-term commitment by both the individual and the survivorship clinician to identify the next manifestation of that gift and to seek innovative approaches to ensuring that it detracts as little as possible from the quality and length of our lives.

This post is the fourth 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   Patient Engagement   Participate in your Treatment   Jessie - Cancer Survivorship Series  

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e-Patient Dave says
July 31, 2013 at 9:43 PM

I've never liked "survivor" myself, because to me it's just "it's over." Denial being my strong suit too, I disregard the meager evidence that says there's a 50% chance my cancer will recur, and there's no way to predict.

But the birth of my granddaughter three weeks ago gives me unexpected outrage at the idea that it might recur. It re-invokes my during-cancer emotion "I'M NOT DONE YET, DAMN IT!"

Your post reminds me that whether I like it or not, there's no certainty. The handiest way for me to deal with that is to kick the can down the road - I might start calling it Schrodinger's Denial: "I'll deal with the dead cat if it shows up."

It's especially hard to curb the desire I get to DO SOMETHING to prevent a recurrence. Because there ain't none. Except somehow my gut says there's value in really enjoying life when I can, because tomorrow might be when the bus hits me.