Self-Advocacy, Staying Calm Help Patients Navigate Cancer Journey: Brian Koffman, MDCM, DCFP, FCFP, DABFP, MSEd

Patients beginning their cancer journeys should act as their own advocates, become experts on their disease, and strive to underreact to both good and bad news, according to Brian Koffman, MDCM, DCFP, FCFP, DABFP, MSEd, a retired family physician, chronic lymphocytic leukemia (CLL) survivor, and executive vice president and chief medical officer of the CLL Society.

Watch parts 1 and 2 of this interview from the Patient-Centered Oncology Care^® conference in Nashville, Tennessee, to learn about persistent gaps in hematology survivorship care and how patients can help fill them.

This transcript has been lightly edited; captions were auto-generated.

Transcript

Many patients report confusion about who manages follow-up care. What are the biggest challenges in coordinating care between oncologists and primary care providers, and what steps can patients take to ensure good care coordination?

Care coordination is still jumbled in most settings, and, unless there's a survivorship team at the cancer center, it usually isn't handled with grace. Some centers are very good at that, but, bluntly, most aren't.

I think the patient has to be their own advocate in this regard, and that's where support groups and nonprofits that are specific to that patient's cancer can be extremely helpful to them, to align them in terms of what they need to be doing. With a lot of these things, more people die of the complications of CLL than CLL progression, so patients need to become aware and their own advocate, saying, "Shouldn't I be having a colonoscopy? Do I need to have a skin check on a regular basis? What about my bone density? Isn't it at high risk?" And it is. "Cardiac disease—I've had these medications, I have this."

Patients need to be their own advocate and be aware of this. Some places are good at it; some are not. Bluntly, most are not, so the patient has to fight for their own screening and appropriate management.

Looking back on your own journey and your work in survivorship, what is the single most important piece of advice you would give to patients starting their cancer journey?

It's very hard to get it down to one thing, but I think, number one, you have to be your own advocate. You have to either become an expert in your disease, or if you can't do that, have an expert in your disease take care of it.

I think you have to underreact. You're going to get good news and bad news, and you have to just kind of underreact and be expecting things not to go well, expecting things to go great, but that doesn't mean it's all solved, that it's cured. Just kind of underreact to all of these things and expect, the old line, that this is a marathon, it's not a sprint. Just pace yourself.

Odds are excellent. The average life expectancy for most people with chronic lymphocytic leukemia is very similar to those who don't have chronic lymphocytic leukemia, whether they need treatment or not. What a breakthrough that is. How amazing that is.

But that doesn't mean we can't do even better, and we can't address these survivorship issues. By being your own advocate, by being an expert or having an expert on your team to help you manage it, and by underreacting to the good and bad news, I think that makes that marathon journey a lot easier.

I think one of the tremendous resources for patients is other patients, and finding a patient support group or peer-to-peer counseling through a reputable organization can be incredibly helpful. There are things that a patient can say to another patient that no health care provider can say, so don't underestimate the value of a support group. They're tremendously helpful in terms of both education and support.