Patient Story

Personalized care in a specialized world

“Or . . . I guess it might be cutaneous T cell lymphoma. . .”

I’m seeing a dermatologist about a skin irritation that just won’t go away. When she says these words, all I hear is “lymphoma.”

I’ve heard that word before — when I was 22 and I was diagnosed with Hodgkin’s lymphoma. I begin asking my current doctor follow-up questions, and she immediately switches to reassurance mode.

“It’s actually not a bad cancer. It’s mostly just treated with phototherapy,” she says.

I’m building a mental list of things to Google later, my concern growing every second the doctor speaks.

“Another term for it is mycosis fungicides,” she says. Seeing my blank stare, she continues, “I just want to be clear that’s not necessarily what I think it is; it’s just one of the possibilities. It’s really rare, though.”

This doctor knows I have a history. It’s in my records. She should be sensitive to the fact that I’ve been through this before, hearing the word cancer and having it be so. I mentioned my history in our first appointment and, as a specialist, I assume she’ll have taken this into account when looking at my current skin irritation and assessing possible diagnoses. Just in case, I bring it up again.

“Does anything about my history with Hodgkin’s affect how you look at this?”

“Oh,” she says, “I hadn’t really thought about it. I don’t think so.”

My story highlights something important that is missing from my health care experience: personalized care.

When I go to the doctor, I’m not just a 39-year-old male, or even a 39-year-old male with a history of Hodgkin’s, Stage IIA. I’m a 39-year-old male who’s heard, “It might be lymphoma” from a doctor before and had it be true. I’ve also heard, “It’s the ‘good’ kind of cancer,” and, “It’s really rare.” I don’t find reassurance in those statements. When I hear these words casually mentioned by a doctor, I know they aren’t recognizing that my past is all part of my current experience.

As my experience with cancer recedes into the increasingly distant memory of my early adulthood, I find it is still a lens through which I experience my ongoing care. It’s there when I go for my annual physical, and it’s there when I go to a specialist. The trick, though, is that I find I have to remind my doctor about this part of me. The doctor or specialist is not an oncologist. The dermatologist specializes in the skin, but not in the skin of a guy who has been treated with ABVD and 30 Grays of radiation.

I never know when “it’s pretty rare” means something is pretty rare overall or just pretty rare for people who haven’t been through what I’ve been through. When I hear about treatment options, I will always wonder how the risks are different for me. I learn that phototherapy involves UV radiation, like an intense version of sunlight. But wait, I’ve been told to avoid the sun! In fact, my initial visit with this dermatologist was sidetracked by the biopsy and later removal of a mole that would have likely developed into melanoma (another story!). So is phototherapy recommended for someone with my history? Is the doctor considering all of this in her conversation with me?

When something like a small skin irritation comes up in my life, there are well-worn neuron pathways that are retraced. The worry, uncertainty, fear, dread—even anger—are all right there. I begin to think that the worst diagnosis is the most likely one for me. I wonder if my life will repeatedly be interrupted by the bad news that my body has once again betrayed me.

I don’t get the sense that doctors always get exactly what I’m going through or understand my specific questions. I don’t think I’m alone.

So, when I think of personalized care, I think of a doctor who treats me with a sensitivity to my personal history and current self, one who knows where I’ve been and has technical knowledge of how it affects things like the probability of a diagnosis or the effectiveness of a treatment option. I yearn for a move beyond specialization and into personalization. Because for everything I do in my care, I bring all of my history with me. I need doctors who can do that, too.