Martha Carlson has been living with metastatic breast cancer for over 6 years. She was diagnosed when her children were in middle school and high school. She has found it rewarding to advocate for improved patient experience and health care communication by volunteering with several national organizations, including the Metastatic Breast Cancer Alliance.
There was a time, some years ago, when I rarely saw a doctor. When I did make an appointment with my primary care physician, I was seen by someone I’d never met before, as the office was part of a program for a busy teaching hospital.
As you might imagine, this meant I didn’t have a strong history with the doctor I’d selected as my primary care physician. Though each physician scanned my background and was caring, no one had seen me regularly over many years through career changes, 3 pregnancies, childrearing, and normal aging. But I was not worried about it; I was healthy, active, and relatively young.
Then I felt a lump in my breast.
I first went to my primary care physician's office, where the doctor assigned to me that day left the examining room and returned moments later with another primary care physician. They discussed in front of me the signs that had brought me to them. I was referred for a mammogram, which led to an ultrasound and then a biopsy.
Following testing, I received the call with those dreadful words, “It’s cancer.” It made me think about the kind of care I wanted. I knew that I could always request an appointment with my primary care physician, but those were hard to come by.
My husband and I set out to quickly find the best-for-me oncologist in the area and a new primary care physician. It was difficult to make such a change when I was facing cancer, anxious and scared about the path in front of me. But I knew I wanted someone I’d always see for appointments who would be “my” doctor and who was part of the same health system as the oncologist we found.
Finding the right primary care physician
To find the ideal primary care physician, we started with the lists my health insurance provided. Then, we narrowed it down by distance, years in practice, and by the doctor’s gender, because it mattered to me that my doctor be female. We then looked at where she went to medical school and did her residency. We also knew we wanted her to be within the same system as my preferred oncologist, which further narrowed down the choices. Finally, we read her professional profile to look at the types of patients she seemed to focus on, which gave us hints that she would be capable seeing someone facing a serious illness. It sounds like a lot, but the first steps cut down the choices dramatically.
Despite the upheaval to my medical care, I’m glad we took the time to feel certain about my entire health care team. I couldn’t have known just how important of a role my primary care physician would play in the quality-of-life issues that go along with being a person living with long-term metastatic breast cancer.
How my primary care physician has helped during my cancer experience
Someone once told me that I am the quarterback of my health care team—the person guiding the plays. I don’t know about that, but it’s true that knowing I have numerous doctors and other health care providers beside me on my team makes my care better and stronger. While I don’t expect my primary care physician to provide thoughts on my cancer care, she knows what that care is and responds with her own knowledge and experience when I talk about my health.
At first, I mainly viewed my primary care doctor as the link between health insurance and all the tests, appointments, and surgeries my oncologist ordered. We communicated via the patient portal after an initial visit or 2, and I was thankful that I didn’t need to add seeing her in person to my suddenly disease-focused life. The truth was that I was out of practice when it came to run-of-the-mill health care. After the initial shock of the diagnosis wore off and the dizzying number of appointments and treatments settled down, I started to pay attention to what my oncologist was saying about taking care of my overall health.
I remembered that I actually liked the attitude of my new primary care physician, whose focus went beyond cancer. Neither she nor my oncologist jump to the worst-case scenario when I mention something that is going wrong. Yet, while my oncologist understandably considers the problem from the vantage point of years of caring for people with cancer, my primary care physician has a broad base of experience. I’m pretty sure she has seen it all. It is, admittedly, nice to mention something to her that I think is related to my cancer treatments and have a conversation where cancer is just 1 piece of the puzzle and possibly not even the biggest piece.
My physical health benefits from having 2 very different sets of eyes looking at it, but so does my mental health. Just getting into the car to drive to the cancer center can bring up ever-growing memories associated with years of treatment and expose the hard emotions I live with. Appointments with my primary care physician, who now knows me well, reassure and remind me that taking care of my “normal” health means I’m much more than a cancer patient. I need my vaccinations and annual checkups for weight, cholesterol, and vitamin levels. She’s who I want to talk to when my sexual health is impacted. She’s who has insight into why I maybe don’t need to worry about a stiff shoulder given my history outside of cancer.
I’m grateful, too, for the ability of her office to move quickly when my oncologist requests care that must go through my primary care physician. I see it as part of my job as a patient to go to the right person for the care I need and to use the skills and knowledge they’ve gained to help me live my best life. Like the quarterback, sometimes I choose to pass to the receiver and other times I need the running back to get the ball over the line.