How Patients With Kidney Cancer Can Advocate for Themselves in Care

Patients can best advocate for themselves by asking questions, staying informed, and remembering they have the right to be active participants in their care, according to Bryan Lewis, CEO and co-founder of KidneyCAN, a patient-founded and –led organization.

Lewis sat down for an interview with CURE, in which he explained that decisions made during treatment may be irreversible, so it is important to consider them carefully. He added that medicine is still a “practice,” which means patients should feel empowered to seek clarity and engage in the decision-making process.

Transcript

What advice would you give to patients on how they can advocate for themselves throughout their cancer journey?

I think the first thing any patient can do to advocate for themselves is to question things and to get as educated as they can, as their disease will allow them to. I mean, you get thrown into the deep end with a cancer diagnosis. Some people want to go all in on the science, while others don't want to hear about it. You have to do more than just not hear about it. You have to, sometimes, fight, sometimes push, and sometimes push back to question what's going on because they are treating you, and you are the patient. You have immense rights to decide what's going to happen to your body.

When I was diagnosed, I got two really good pieces of medical advice. One of them was that when you make a decision on this journey, sometimes you're going to go down a path and have to make a right or a left, and when you make that decision, you won't be able to go back to where you were. You're going to have to keep going. So keep that in mind—sometimes decisions on therapies, surgeries, or whatever, once you go down that path, there's no going back to start over.

The second thing was, one of my oncologists said to me, "Brian, remember this: we are in the practice of medicine, with the emphasis on the word 'practice.'" He said, "We know a lot. We've learned a lot about all of this, but we're still practicing medicine. We don't have all the answers. So feel like you can ask questions about what we're doing because we don't have 100% certainty of what we're doing, but we're pretty confident in what we're doing. That's why we're treating you." I took that to heart—that yes, doctors many times are an authority and are the ones who know the right answers, but you are a part of the process, and you need to stand up and ask for information when you need it or want it and be entitled to it.

Transcript has been edited for clarity and conciseness.

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