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

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 ten 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.

Many people lose track of their primary care clinicians when they are deep into their cancer treatment. Indeed, it’s probably the case that with the exception of chronic conditions like diabetes and heart disease, many of the health disturbances 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 clinician to whom you are talking all the time and who has up-to-date information on you.

I wish I’d known earlier that once active treatment is over that 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 and sex 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 new exotic specimen. Only then will she be able to separate for herself and for me whatever symptoms I have from a recurrence of my cancer (or a new one). Only then will I be able to benefit from the broad array of approaches and tools of primary care.

I have at times, out of sheer inertia, fear or laziness, tried to use my various oncologists to deliver 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 “I don’t know anything about the flu,” 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 efforts to live interesting, active lives.

This post is the sixth 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.