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 is 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 70s and 80s, 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 similarly 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 out-moded treatments has become more systematized.
“Oh, this is classic in Hodgkin’s patients treated in those days,” remarked my 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 “classics.” 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 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 treatment.
I don’t wish that I had 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, rather than fading to nothing, accumulate over time. It is not only the fact that I have had cancer but the particulars of my treatment that increase my risk. 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 naïve idea of how this should work … the tincture of time, the fading of the effects of surgery and minimal chemotherapy or radiation. For them — if they and their doctors can agree who they are — survivorship care is a matter of vigilance for five years post-treatment and then 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 keeps 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.
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.