Blog | Thursday, September 5, 2013

I still need a primary care provider since most headaches aren’t brain tumors

Having cancer has infected me and many others with the irritating tendency to view any persistent, troubling symptom through the lens of a recurrence or a diagnosis of a new primary cancer. A friend of mine who is nearly five years post-kidney cancer treatment casually remarked the other day that he needed to see a doctor about his sore ankle: it could be arthritis, but it might be cancer, of course. Someone I interviewed recently commented that despite the 10 years since her treatment for breast cancer, she frequently has to convince herself that each new symptom that crops up is not evidence of another catastrophic cancer diagnosis and about which she panics.

Many people lose track of their primary care clinicians when they are deep into their treatment. Indeed, it’s probably the case that with the exception of chronic conditions like diabetes and heart disease, many of the health glitches we experience during this time are treatment-related and are best handled by our oncologist or through a direct referral – often to a specialist, interestingly. But in the midst of an episode of cancer treatment, it sure is more convenient to get a prescription for a urinary tract infection from a practice to which you are talking all the time and that has up-to-date information on you.

My experience has taught me, though, that once active treatment is over, regardless of my tendency to regard every lingering ache or pain as a recurrence, if I’m getting my survivorship care from my treating oncologist or other survivorship specialist, I have to find myself a primary care clinician who knows my health history. Why? Because despite the wallop packed by cancer treatment, I still am vulnerable to all the germs and stresses and injuries that everyone else of my age is subject to. My primary care clinician needs to be someone who is familiar with complicated patients like me, not someone who will regard me as a brand new specimen. Only then will she be able to separate for herself and for me whatever symptoms I am having from a recurrence of my cancer (or a new one). Only then will I be able to benefit from the broad array of tools used by primary care.

I have at times, out of sheer inertia, fear and laziness, tried to use my various oncologists to deliver my rudimentary primary care. This has proved a bad idea. It’s difficult to get in to see them anyway and once you are there, they tend to say things like “Not my body part,” or “Don’t you have a primary care doctor? You should get one.” And lately, as I have been the recipient of good primary care, I have come to see the risks I took by not having my health care coordinated by a general practitioner.

This tendency for even minor symptoms to set off a mild (or major) panic is not trivial for many of us. I am particularly prone to this kind of thinking these days because my two most recent cancer diagnoses came after my attempts to treat minor symptoms as such were cut short by my vigilant survivorship doctor and they turned out to be gastric and lung cancer respectively.

But such thinking can lead us to hang on to our oncologist-anchors at a time when a good connection with a primary care clinician has the potential to prevent, manage and treat other conditions (flu! pneumonia! accidents!). Such a connection can help us regain our perspective and confidence about our health so we can sustain our effort to live as well as we can for as long as we can.

Jessie Gruman, PhD, is the founder and president of the Washington, D.C.- based 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 and a regular contributor to the Prepared Patient Blog. This post is the sixth in a series about lessons 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 possible.