Deb Beyhan is the Patient Legislative Advocate for KidneyCAN. She was diagnosed with stage IV kidney cancer in 2016 at the age of 53. Deb lives outside of Atlanta, GA, with her husband.
For this month’s Community Spotlight, we want to tell you about a member of our volunteer team, Deb Beyhan. Deb is the Legislative Patient Advocate with KidneyCAN and works tirelessly to support our advocacy events (and all of our projects). Here, she shares her diagnosis story, tips for new patients, and how she became passionate about kidney cancer research funding.
A Diagnosis of Kidney Cancer
Please tell us as much as you’re comfortable sharing about your diagnosis and the treatment decisions you faced.
I am 59 and was diagnosed with stage IV kidney cancer at age 53. Like most people, I was diagnosed incidentally following some symptoms. I knew it was potentially serious and hoped it was nothing more than kidney stones; however, at my first trip to the urologist, I learned I had kidney cancer. Six years later, I am still on my first treatment. The saga continues.
At the beginning of a cancer journey, many patients want to be watched closely. I chose to enter a clinical trial, as this was just when trials using immunotherapy were getting started. When the trial began, I was randomized to SUTENT, the control arm, instead of the immunotherapy treatment. I was a bit disappointed, but decided to stay with the trial because patients in the control arm were still monitored every few weeks. SUTENT turned out to be the right drug for me.
Finding Support with Other Patients
What resources or support have you found most helpful while living with kidney cancer?
When I was first diagnosed, I was fortunate to have family and friends with me. However, I really wanted to talk with other patients. There is a certain camaraderie only those with kidney cancer share. I am definitely not minimizing the role of family and friends, but patients have a special bond.
Soon after diagnosis, I found the Smart Patients kidney cancer community online. I began to educate myself on all things related to kidney cancer. I am certainly no expert, but I do believe that being an educated patient helps us make good decisions and find the best care.
Smart Patients has helped me so much. I have met up with other patients online and in person, and we have built meaningful friendships over the years.
In the spring of 2022, Deb met up with two of her friends and fellow patients in the Smart Patients community. In this video, Deb, Meryl, and Charles share their experiences living with kidney cancer.
Discovering a Passion for Advocacy
With your help, KidneyCAN has recruited over 800 advocates to attend more than 1,000 meetings to ask Congress to fund kidney cancer research. You even recruited your own doctor! Can you tell us how you got started with legislative advocacy?
During one of our Smart Patients meet-ups, I had lunch with a group of friends in New York City. I met Bryan Lewis, a co-founder of KidneyCAN, who told me about the lack of direct funding for kidney cancer research in the federal budget.
It really struck me how little money and attention were being given to kidney cancer when there are so many unanswered questions. Why am I a SUTENT responder, when others are not? How can we improve stage IV survivor rates? Can a test or biomarker identify kidney cancer before it progresses to stage IV? We still have so much to learn, and in the meantime, we are losing people to this disease every day.
I have since become a passionate advocate for research funding. I told Bryan that I would do whatever I could to help, and for the last few years, I have worked to educate patients and gather delegates for KidneyCAN’s advocacy events.
It may seem intimidating to talk to members of Congress about kidney cancer research funding, but they need to hear our stories – loud and clear! They control the checkbook. We need them to open that checkbook and give research funds to the smart people who are working to find cures. A wise man once told me, “You may not be an expert on legislative matters, but you are an expert on your kidney cancer.”
When she was diagnosed six years ago, Deb thought she would never see her daughter Deniz get married or have the opportunity to hold a grandchild. Just last weekend, Deb was there for her daughter’s wedding. She says, “Right now, I am living a great life. I travel and see places I thought wouldn’t be possible anymore.” She encourages patients to avoid focusing on the survival statistics, as each person’s path is unique.
Here is Deb with part of the KidneyCAN team at the 2022 Kidney Cancer Research Summit. KCRS is a meeting where researchers share the work they’re doing with the federal grant funds that Deb advocates for year-round. She encourages patients and their families to get involved: “Not all of us can travel to DC to attend a meeting, but most of us can make a phone call.”
Advice for New Patients with Kidney Cancer
What would you share with someone who is newly diagnosed with kidney cancer?
Not everyone is as lucky as I have been. Sadly, the kidney cancer community has recently lost some truly remarkable people, folks who have worked to advocate for cures and contributed to the progress we’ve made. Because of their efforts, the statistics are changing and people are living longer and better with this disease.
So I would tell newly-diagnosed patients to avoid looking up survival rates and prognosis statistics on the internet. The drugs and treatment options are improving rapidly, and those numbers are changing so quickly that the online stats are not keeping up. I saw some of those outdated stats myself and have seen other new patients alarmed by them.
Instead, I would encourage you to focus on these positive steps you can take:
- Educate yourself using credible resources.
- Get yourself the best possible care, even if that means traveling.
- Consider second opinions from experts who are known for their work on kidney cancer.
- Speak up for improved research funding.
- Keep doing what makes you happy!
There are ups and downs on this road we travel. Embrace them both. Good times, challenges, growth, and change – they are all part of life, whether you have kidney cancer or not.
Sometimes, the blahs have a tendency to hang on a little too long. When that happens, I suggest moving a little. A short walk or a little fresh air does wonders to jumpstart your spirit. Some of the drugs we have to take can give us physical side effects that are hard to overcome, but keep hydrated and do what you can to keep active, even if it is just a little stretching. My doc told me once that there is nothing wrong with a Netflix binge now and again!
We can never know what the future brings, so we do what we can with today. I thank all who have come before me and wish for unremarkable scans to you all!