Dr Brian Koffman: It Is Critical That Patients Educate Themselves and Leverage Their Advantages

As a physician, Brian Koffman, MDCM, DCFP, DABFM, MS Ed, medical director, CLL Society, was able to leverage his medical and scientific knowledge during treatment for his chronic lymphocytic leukemia (CLL), and he encourages other patients to educate themselves on their illnesses in order to receive the best care.

As a doctor, but not a hematologist/oncologist, what was it like to become a patient diagnosed with CLL?
I think as a physician when you’re diagnosed with a life-changing cancer such as CLL, you have an extra responsibility and burden because you can see further, you can see around the corners. So, I took that burden and wanted to sort of come out of the closet and share my journey. That was my personal response. I became very public about my CLL, and it was at a time that CLL treatments were changing radically, and it allowed me to share my experience and sort of give forward so people could benefit from what I had been through, what mistakes I’d made, what good choices I’d made, and learn from that.

When you’re a physician, often the other physicians assume that you know what’s going on. But I’d often ask them to stop and say, “Hey, explain to me as if I’m an ordinary patient. I’m not a hematologist/oncologist, let me see if I can understand this and know what’s going on.” So, I think that that’s another piece that you need to be involved in.

Our motto [at the CLL Society] is “smart patients get smart care,” so I think it’s really critical to educate yourself. And you don’t have to be a physician to educate yourself. You can learn the information and then share it with your treatment team and say, “Hey, does this make sense for me? Does this apply here?” So, that’s the kind of thing that I push. It’s easier for me as a doctor to read those articles. It’s easier to understand the medical conferences stuff. So, I use all of that to leverage and I think every patient has to leverage whatever advantages they have. And I use my scientific medical knowledge and that’s why I enrolled in 2 very early trials, which were life-saving for me.
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