I WISH I’D KNOWN EARLIER…I STILL NEED A PRIMARY CARE PROVIDER SINCE MOST HEADACHES AREN’T BRAIN TUMORS

By Jessie Gruman

April 2, 2014

I wish I’d known earlier that survivorship care is neither a do-it-yourself project nor is it something that I can simply hand off to experts. There is no stable set of signs, signals and test protocols that, if followed assiduously — and that come up negative — means I am protected from a recurrence, new cancer or late effects of treatment. Observation, expertise and self-knowledge from both me and my doctor are critical to getting the best follow-up care.

As former cancer patients, we can’t just walk in to our appointments with our oncologist, survivorship specialist or primary care doctor every six months or year and have survivorship care handled for us. Far from it. We are the historians of our health. Only we can observe the fluctuations in our functioning and report on the symptoms that underlie them. Only we can describe our reactions to drugs and procedures. Only we can verify the accuracy of our records. Only we can actually show up, follow through on testing and experiment with fixes to see what might work for us.

But the context in which we take those actions becomes more complicated with each passing year. Treatment trials find new patterns of risk for late effects, and new approaches to treating late effects are developed. Some of this takes place within oncology, but much of it takes place in related disciplines: cardiology, endocrinology, rehabilitation medicine, physical therapy. Keeping a critical finger on the pulse of those developments is a nice hobby for those patients with the time and interest, but the responsibility for really knowing what’s going on in those fields belongs to my survivorship doctor or team rather than to me.

This is a mutual enterprise, my survivorship care. Without me, my careful monitoring of my own health and willingness to act to find good solutions, my doctor has nothing to work with. Without my doctor, his careful monitoring of research developments, his wealth of experience with other patients and his ability to personalize what he knows for my unique history, I have no guidance to discover and address the long-term effects of cancer treatment.

If you are a cancer survivor, you know how the panic of a new diagnosis sparks a promise to do whatever it takes to return to health and then to take really good care of yourself so this never happens again.

Right?

A few years after I finished treatment for my first diagnosis, Hodgkin’s lymphoma, I finally came around to thinking that getting someone to provide survivorship care was probably a good idea, but I was having trouble finding someone to provide it). “Well OK,” I thought, “I’ll just have to do this myself.” And so I gave it a whirl. In a fit of industriousness, I searched for journal articles about long-term results from relevant treatment trials and tracked down treatment guidelines. I talked to oncologists and staff at the National Cancer Institute and the American Cancer Society and put together a list of tests to get and symptoms to look out for. Then I got distracted by, oh, life and attended to my plan when I remembered to… when I had time. And because I had this little plan in place, my enthusiasm for finding a physician who would deliver real survivorship care ebbed.

This would be a better story if I could tell you that I paid dearly for my casual approach to my care. But I didn’t. I lucked out and had an uneventful healthy few years. However, when I finally found a good survivorship doctor, he spent two full hours going over just what I was at risk for and what I could do about it. I felt chills go down my spine.

How could I have missed all that information? How could I have overlooked whole organ systems and recommendations for monitoring and testing? Minor health disturbances (heart problems, swallowing, neck weakness), when seen through the lens of survivorship, had explanations and solutions, whereas before they were random signs of aging. How could I have forgotten those promises I made to myself about really taking good care of my health each time I’d been diagnosed with a new primary cancer? How could I have put myself at such risk?

We all make promises to ourselves we can’t keep (think New Year’s resolutions) and the ones we make while terrified by a new cancer diagnosis are probably no more or less likely to stick. But the one many of us make to take better care of ourselves needs to include our active participation in our survivorship care. We must find a good survivorship care clinician/team that can join us in our effort to live for as long and as well as we can.

This post is the seventh 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.

• 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.