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’d Known Earlier...I Still Need a Primary Care Provider Since Most Headaches Aren’t Brain Tumors


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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.

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   Inside Healthcare   Patient Engagement   Find Good Health Care   Jessie - Cancer Survivorship Series  

Comments on this post
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Elaine Alfano says
August 14, 2013 at 7:17 PM

I question whether it makes sense for an oncologist to provide survivorship care beyond a very limited time post-treatment. A good primary care provider should be able to effectively provide adequate screening and surveillance. Identifying signs and symptoms of cancer are clearly in the scope of primary care. In my mind, oncologists should refer patients back to their PCP after their expertise is no longer needed for evaluation and treatment of active cancer. The oncologist should transmit survivorship care recommendations to the PCP and in doing so the PCP will know that she now has responsibility for screening and surveillance. Oncologists have incredible depth but in specializing--often in a particular type of cancer--they are not, in the hierarchy of things, very likely to provide good survivorship care. And, quite naturally, they are focused on the compelling problems of individuals in active treatment.

Shoshanna says
August 14, 2013 at 7:40 PM

A good PCP is also important to keep you up to date on preventive interventions, including shots for the flu and pneumonia and even shingles. Hard to think prevention when in the midst of intense treatment, but perhaps it is part of a commitment to life.

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Courtney says
October 13, 2013 at 4:31 AM

I just discovered this series tonight, and am still somewhat stunned. Having been treated for Hodgkin's in '76 at the age of 23 in a major university cancer center, I wasn't made aware of any of these possibilities. Indeed, I was sent on my way (with my ultimately permanent half-bald head) to carry on with basically only cautions about asplenia vulnerabilities and pulmonary scarring.

None of my PCPs have ever been knowledgeable on post-radiation effects, and now, as you list them, I realize I'm a textbook case--neck, back muscular & skeletal distortions, difficulty swallowing, and now I wonder about cognitive effects. I'm aware my congestive heart failure is the result of my radiation damage, and my compromised lungs make me a poor candidate for surgery. I mainly feel cheated out of having health care providers who could have helped me with proactive physical therapies to perhaps stem some of the muscular issues.

It makes me shudder to think of what we're doing to young people now that will be explained decades down the road with,"We didn't know..."