President and Patient Advocate at KidneyCAN in Philadelphia, Pennsylvania.

Bryan Lewis

Patients can best advocate for themselves by asking questions and remembering they have the right to be active participants in their care.

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.

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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There are many reliable resources available to patients with kidney cancer, as well as their families and caregivers.

How Patients with Kidney Cancer Can Get Up-to-Date, Timely Information 

There are many reliable resources available to patients with kidney cancer, as well as their families and caregivers, which allow them to stay up-to-date with timely data and other information, according to Bryan Lewis, CEO and co-founder of KidneyCAN.

KidneyCAN is a patient-founded and patient-led organization; it is driven by individuals across the United States and worldwide affected by kidney cancer. The mission of KidneyCAN is to speed up the development of cures by advocating for funding, supporting research financially, educating patients and caregivers and connecting them with clinical trials and treatments.

As a community voice, KidneyCAN aims to promote equitable and inclusive efforts toward accelerating kidney cancer cures.

At the 2025 Kidney Cancer Research Summit, Lewis sat down for an interview with CURE to provide insights into how patients with kidney cancer and their caregivers can stay informed and get involved with cancer research.

How can patients stay informed and get involved in pushing research forward?

Yeah, there are a couple of ways that patients can stay informed and get involved in pushing research forward. One way is through the online kidney cancer community called “Smart Patients.” It is a closed community, so you have to qualify to join. It is a wonderful resource for kidney cancer patients to learn more behind the scenes without feeling pressured. It's a closed community with a lot of open dialogue on a wide range of topics.

There are also many other resources available. Once you start looking, you will find that organizations like the National Comprehensive Cancer Network (NCCN), National Institutes of Health (NIH), and the American Cancer Society all have extensive resources that you can use to educate yourself. Many of these resources include patient-friendly versions of research and other documents.

Additionally, we would, of course, love for you to join us at KidneyCAN and become part of our grassroots army that goes to Washington to make our voices heard.

"Who We Are," by KidneyCAN. https://kidneycan.org/who-we-are/

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Speaking of advocacy, Mr. Lewis, you run KidneyCAN. You have been instrumental in getting all of this funding for kidney cancer research. Talk a little about resources and the challenges that are coming up for the field.

 First of all, thank you, Dr. Lee. Meryl, your story is so inspirational and moving. We need to cut that section out and make it a motivational speech to send around. It was awesome to hear that. I have a couple of other thoughts on that before we talk about advocacy a little.

Ms. Virdee, what you pointed out about communication is so important. It’s hard to communicate in the medical environment. Sometimes people are intimidated. But if you create an environment where there’s collaboration, discussion, or shared decision-making, and there’s a sense that people can be comfortable talking with you, with their medical providers, that’s huge. That’s a huge barrier that a lot of people don’t realize. They come into a hospital setting and it’s off-putting at times, or it can be scary. Breaking down that barrier of communication and allowing for communication is so important. Especially because many of us have been on Google looking for information and have misinformation.

Another point I want to touch on is that we talk about side effect management a lot these days because it’s so important. I’m not sure where this goes exactly, but the medical profession talks about grades 1 through 5. We don’t even want to talk about grade 5 most of the time. I’m wondering if we can’t dive down a little further, because it’s hard to distinguish as a patient the differences between grades 1 and 2 and between 2 and 3. We don’t have time to go into that right now, but that’s something we need to work on as a community.

Quality-of-life measurements are gaining importance in clinical trial design and development. We all applaud that. Now it’s up to us to try to figure out how we approach quality-of-life measures as a standard across society. One of the things someone told me recently is, “When you think about measuring quality of life, what you’re not taking into account is that you had a different quality of life prior to having cancer. You now have a new standard of what your quality of life is because you have cancer.” You have to keep that in mind.

Thank you for this opportunity to hear Meryl’s story—that was awesome—and the latest on personalizing medicine. That’s very inspiring for the patient community to hear. Quickly on the front with advocacy, as Meryl pointed out, kidney cancer has been underfunded for many years. As you said, Dr. Lee, we’re sixth or eighth or ninth, depending on the year and gender, but we’re in the top 10 of cancer diagnoses. We need to have more funding to find out what’s going on in this space.

KidneyCAN and eight or nine other organizations partner to do advocacy on Capitol Hill in Washington, D.C. Yesterday, we finished about 180 meetings with 39 states represented. I have to give a shout-out to our wonderful leader, Debra Beyhan, from Atlanta, who’s organizing most of this. We have doctors, researchers, and patients talking to our elected representatives and saying, “Thank you for this investment in kidney cancer research, but we need more.” We need more at the NIH [National Institutes of Health]. We need more through the KCRP [Kidney Cancer Research Program] and others. And I think our voice is being heard.

We’re louder these days than we have been in the past, and we continue to march forward, but we’ve got a lot of ways to go. The reason that came front and center yesterday was because I was on a call with one of the Senate offices, and one of our patient advocates told her story about being diagnosed with kidney cancer, but then during treatment being subsequently diagnosed with breast cancer early on. She compared her treatment for breast cancer early on with her treatment for kidney cancer, and it’s unfortunately night and day. The amount of research and knowledge that they have around breast cancer these days is off the charts compared with the knowledge and information on kidney cancer. We have to change that. That’s what we’re doing. With people like you and others who are doing the research to help advance cures, that’s what we’re all in this together to do.

We’ve been very fortunate to have some champions in Congress. We’re continuing to march forward. We asked yesterday for $60 million for the KCRP. I got cautiously optimistic, but we heard this morning that the omnibus bill that came out for this fiscal year includes our $50 million for kidney cancer research. We locked it in for another year. Now we have to get some more, and efforts like from everybody on this call is making a difference. Thank you for this opportunity.

Yes, the work that you do is fantastic. The ability to have a unified voice from the patient, advocate, researcher, and clinician front is necessary to think about how we can move the field forward. The ability to have all of these scientific advancements unfortunately isn’t free. These types of investments that we’re all making are critical for thinking about how we can advance the field and change outcomes for patients.

First of all, let me thank all of you for joining me today and sharing your valuable perspectives. And to our viewing audience, thank you for joining us. We hope that you found this episode of the 

Bryan Lewis, president of KidneyCAN, and Chung-Han Lee, MD, describe unmet needs and future perspectives in the treatment of renal cell carcinoma.

Unmet Needs and Future Perspectives in the Treatment of RCC

Ms. Uranga, do want to talk a little more about your journey as a patient, where you are now, and where you see things going?

 The beginning was crazy. It was a whirlwind of not knowing what was going on, being told what to do, going through the motions, and shock. I was in my mid-50s. I never expected my life to take that turn. I went through a lot of anxiety and depression. I was really lost and felt like I didn’t have much ahead of me. That has dramatically changed for me. I know the fact that I’m doing well physically has helped, but the psychological side of getting involved in my care and in the community in a support arena, and more than anything, as an advocate [has helped immensely].

Since my diagnosis, I have seen the funding for research go from $0 the year before I was diagnosed to the $60 million that we’re asking to have for the next year. Because of that, I’ve also seen FDA-approved treatments, with one after the other coming out, like was mentioned earlier. It was just a few several years ago. When I was diagnosed, there were a couple more on board. Now we’re talking double digits, 14 or 16, with triplets coming down the road, like you said.

My mental world has improved so dramatically because of the knowledge and empowerment that I have from getting involved, understanding this, and doing my part to make it happen. It’s a small part, a drop in the bucket, but I do whatever I can do. It has changed my whole outlook on my life, my future, and my day-to-day existence. I’m extremely active. I hiked this past weekend. In fact, one of my kids reminded me, “Mom, we went to this place nine years ago and you couldn’t do the hike. And here you are after cancer and 60-plus years old, and you did the hike.”

That’s basically how I see my life now. I don’t take anything for granted. I feel like I’m [helping move things along]. Because of the work that I do with KidneyCAN, I see that’s a reality, that we can keep [making advancements], with new treatments becoming available and the level of research and education.

I was fortunate to be privy to the Kidney Cancer Research Summit this past year, which is hosted by KidneyCAN. That was such a boost as well because there are brilliant minds working on this. There was a day where I’d just sit around thinking, “It’s just not fair. I want to see my grandkids be born,” and now I have two on the way. That actually looks like it’s going to happen. It’s become a totally different world by getting involved. That’s what I’ll share with people who want to hear my story, especially newly diagnosed people who are feeling lost and in that state of mind. Get involved and make things happen. It makes a world of difference on a personal level and in helping the general cause that we’re working toward.

It’s absolutely fantastic how much you’ve gotten involved with this diagnosis. We truly appreciate all your efforts in being an advocate and trying to do all that you can to not only improve your own life but the lives of people in the United States and around the world in terms of advancing the research. The work that you do is truly fundamental in being able to do that.

 Circumstances worked out where I was able to retire from my professional career a couple of years ago, so I have the time and the skills. That’s what I’ve said to the people I work with at KidneyCAN and everything. I was a project management professional. I have the skills to help. I was also in media for many years. That’s another thing that I can contribute. I’m [available]. I have the time and the desire to do it because I’m giving back [and expressing] how much this has helped me in my own perspective in living my life. I couldn’t have seen this a few years ago. I was just sitting around waiting for things to go bad, and now I have the opposite view of my life, and I think it’s going to get better.

From a quality-of-life standpoint, as a medical oncologist, this is what we strive for in terms of helping you maintain quality of life and allowing you to do the things that you find important. One of the things that patients sometimes think at the beginning before they’ve started on treatment is that the treatment isn’t working unless they get sick. That’s not what we want for you. There’s often a lot more pushback from the patients about potentially dose reducing and making those modifications to improve their quality of life. I tell my own patients, “I can’t predict how much time I can give you, but whatever I can do to make that time better is incredibly valuable.” How about for you in terms of your own health care team? How frequently are you seeing them now? Who else on the team besides your oncologist is involved in your care when you have questions?

 For the last couple of years, it’s mostly been telemedicine. I have very rarely been in person other than the things I have to do in person, such as getting an infusion. They haven’t figured out how to do that from afar. I meet with either my oncologist or one of his nurse practitioners, and I do that about every other infusion. That would be about every six weeks. We check in and talk about future scheduling, how I’m doing, concerns, questions, side effects, etc. I reach out through the portal in between those visits if I need to. I also work with a radiation oncologist who basically manages my brain situation. My oncologist is aware of what’s going on, but my radiation oncologist manages it.

I received great news on that. Because I’ve been treatment-free for over two years with my brain, I’ve been switched over to six-month scans. That was a big celebration in this house because of what it indicated more than anything. I still get the other scans every three months, but the fact that they felt that it was OK to stretch it to twice a year is really good news. I have no medical basis on which to base this on, but it has been ever since I started immunotherapy that I’ve had no activity with the brain. I had five radiation treatments on very small 2- or 3-mm things in my brain that were treated with radiation, SRS [stereotactic radiosurgery] gamma knife. But since immunotherapy, I’ve had zero. I don’t know. It’s anecdotal, but that’s been my experience, and I’ll take it.

We’re very happy for you based on the response that you’ve had and all your contributions to the field in terms of advocacy.

Meryl Uranga describes her path with metastatic clear cell renal cell carcinoma after first treatment, and how it has affected her outlook on her life and future.

Bryan Lewis

How Patients With Kidney Cancer Can Advocate for Themselves in Care

How Patients with Kidney Cancer Can Get Up-to-Date, Timely Information

Unmet Needs and Future Perspectives in the Treatment of RCC

The Importance of Patients Advocating for Themselves During Their RCC Journey

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