A Cancer Patient Asks: Am I Spoiled?

Is it too much to ask to have a relationship with your healthcare provider?

I have mixed feelings about my primary care physician.

More than 13 years ago, it was his investigation of an innocuous looking lump that eventually led to my initial diagnosis of follicular lymphoma. I’ve often wondered what if he didn’t send me for more tests? What if he didn’t order the biopsy? When would I have been diagnosed? Would I have developed bad symptoms first? Would it have been a worse diagnosis? Maybe he just discovered what would have eventually been discovered anyway?

I say all that because it makes me think that I should be thankful for his attention - and that he must have been a good doctor. But lately, I’ve been questioning that line of thought.

Ever since I was released back into the wild, so to speak, after passing the one-year post transplant milestone, I’ve been able to do a lot more normal things — including going to the dentist (fun) and seeing my primary care physician for the first time since this whole adventure began more than two years ago.

It felt like a milestone for me, but it seemed more of a pain for him. Which led me to think: Are all cancer patients as spoiled as I am with their oncologist or is it just me ?

First of all, it took two emails and two phone calls just to make an appointment. I assumed that was because he was retiring but I was assured that wasn’t the case when I made the appointment. Guess what: He told me he is retiring when I saw him. But what struck me most is the complete apathy he exuded. I’ve been going to see him for about 25 years and yet he was surprised that I lived in Rhode Island (we’ve been here for 21 of those years), didn’t know that I had two boys, and in my first appointment with him since going through my stem cell transplant, he didn’t once ask me how I was doing. Hell, my dentist showed more empathy toward my recovery than my PCP did.

Transactional Relationships

Years ago, before I was diagnosed, in the course of my job as a communications professional, I would often interview oncologists for their online video profiles. When I asked them about why they pursued a career in oncology, almost without exception, the doctors would say that it’s because they get to develop long-term relationships with their patients.

My oncology team knows my wife; they knew who my kids are by name; they know what schools they go to; that they’ve studied abroad (and where); and that I’ve visited them. Sure, much of this is likely in my chart. But we have conversations as if we know each other - as if we have a relationship. And when I have a question, or an anxiety or concern, I can contact them and they get back to me. Quickly.

But my relationship with my primary care is purely transactional. And I don’t think I’m alone. Medical practices are bought up by larger practices and merged with other groups all in the interest of efficiencies and economies of scale. And all of that makes it one big transactional assembly line of patients. Maybe this is just the nature of being a primary care physician — with the constant demands from corporate executives, insurance companies, and government regulators. One of the reasons my PCP is retiring is because he wants to keep practicing, but to do so means he has to be in the patient record every day - even on vacation, so he said — just to keep up.

Which makes the following story a bit ironic.

After visiting my PCP the other week, I had an abnormal result in one of my blood tests, which I saw in my online health record. It’s a result that could get people worried, at least a bit, if they weren’t informed. Is this normal? How accurate are these? Should I be worried? Should I retake the test? Should I see a specialist? Is there more information I should have about the test? These are all questions I might have. But two weeks have passed since I saw that result and I have had no communication from my physician or his office - not an email, snail mail, phone call. Nothing.

When I get bloodwork done at my oncologist - even PET or CT scans - we are talking about them that day, often within an hour or two of having them done. This is the relationship I’ve had with two different oncologists and nurse practitioners at Dana-Farber, over the last 13 years. It makes me wonder whether it’s the nature of the specialty, and all oncologists work this way, or if I’m just particularly spoiled to have the best of the best.