Fifteen Years with Kidney Cancer: Turning Fog and Fear into Advocacy
When Glenn was diagnosed with cancer in 2010, he entered what he now calls “super dark days.” He felt lost, depressed, scared–and remembers thinking "I didn’t understand 99 percent of what was happening to me, other than that I had a disease." He realized that he craved more information in addition to connecting with others who were going through the same experience.
That connection came, unexpectedly, through a small online community mentioned to him in passing after his initial surgery. It changed everything. He said, “It put a light into hard times." Glenn had found his way to the Kidney-Onc mailing list at ACOR (the Association for Online Cancer Resources). In 2013, that listserv and others from ACOR moved to the new website-based Smart Patients—a quiet corner of the internet where people living with serious illness gather to share not just information, but also encouragement, experience, and hope. Glenn quickly became part of an active community that was more than a place to trade medical facts. It was also a space where people shared not only what they were learning, but themselves. Fifteen years after his initial diagnosis, he still continues to visit Smart Patients daily
Building Confidence, One Post at a Time
Glenn doesn’t consider himself to be a prolific contributor. He responds to posts when he has something meaningful to offer. He appreciates his fellow kidney cancer community members, having personally benefited from those responding to questions. He often turned to them for practical advice on how to handle extended hospital stays, manage side effects, and live with uncertainty. It made a massive difference for him. “There are people who always show up for us. That kind of steady presence means everything.”
What he found in Smart Patients isn’t just a support group. It’s a tight-knit community where people freely share their experiences and knowledge. Over time, he began to understand his diagnosis better as he picked up on the language of treatment options, side effects, and clinical trials. “Smart Patients helped me find my voice,” he says. “It gave me the confidence to ask better questions, to be a stronger advocate for myself.” Glenn also came to believe that learning more helped him to be a more valuable partner to his doctor. Doctors bring clinical expertise, and patients bring the lived experience of their condition. When both come together, it opens the door to more meaningful conversations and better decisions.
A Launchpad for Advocacy
In 2019, shortly after retiring, Glenn's oncologist asked him whether he’d serve as a patient research advocate for the ECOG-ACRIN Cancer Research Group which conducts clinical research in adult cancers including kidney cancer.
He said yes.
That “yes” led to speaking engagements. He was being invited to speak at patient panels, caregiver discussions, and to medical staff interested in hearing from patients’ experiences as part of their medical education. “Advocacy can take up your whole day if you let it,” he laughs. “You have to be selective. But the needs are huge, especially for people who are analytical, articulate, and passionate.” He’s grateful that his curiosity—and the encouragement he found in a community generous with its time—have helped shape a voice that others now seek out and value.
The Smart Patients Difference
What distinguishes Smart Patients, he says, is the quality of the conversation. “There’s no shortage of information online. But Smart Patients provides grounded, well-supported thinking. And when misinformation shows up, the community steps in. That’s rare—and it’s essential.” He also keeps a folder of posts he found inspirational over the years to turn to if those dark days return.
He reminds others that he didn’t plan any of this, but he was willing to say yes. “Put yourself out there. Write a post. Join a webinar. Speak if you can. You never know where it’ll lead, and that made all the difference.”
Glenn knows that for patients navigating serious illness, it’s not just about surviving. It’s about growing, connecting, and when ready, giving back. Today he shares studies, ongoing experiences, and tools that helped him along the way. “The more people contribute, the stronger the community becomes. That’s what makes Smart Patients special. It’s not just what you get—it’s what you give.”
More on Glenn and His Medical Journey:
After surgery in 2010 to remove his kidney, things were stable for Glenn until suspicious spots began to appear on lung scans.
In 2015 it was confirmed that the cancer had metastasized, so he began high-dose interleukin-2 (HDIL-2) treatment, a difficult but aggressive therapy. It helped slow the disease but didn’t bring remission, so he carefully explored next steps.
In 2017, he enrolled in a clinical trial combining two immunotherapy drugs, Opdivo (nivolumab or nivo) and Yervoy (ipilimumab, aka ipi), at Rush University Hospital. This two-year treatment kept the cancer mostly stable, with some tumors shrinking and very few side effects beyond fatigue.
In 2021, new tumors were found in his adrenal gland, rib, and spine. He resumed ipi/nivo and underwent stereotactic body radiation therapy (SBRT) and cryoablation (a freezing treatment) for targeted tumors. He also had MOHS surgery to remove small skin tumors that appeared later.
In 2023 he added two new elements to his treatment: a probiotic (CBM 588) and a cancer drug called belzutifan, which led to significant shrinkage in several lung tumors.
However, in 2024 a single lung tumor began growing again. After weighing his options, he again chose SBRT to target the new growth.
Today he continues under the care of leading doctors at the University of Pennsylvania, stays active and engaged, and takes on each stage with thoughtful planning and quiet determination.
Glenn is still a regular presence in the Smart Patients kidney cancer community, offering steady encouragement to those just beginning their journey. His advice is simple but deeply felt: “No matter what the news is, have confidence that you’ll deal with it just as you’ve dealt with all the things leading up to that point.”
For Glenn, and for so many others, the community has been a lifeline—a place to make sense of uncertainty, to be heard, and to remind one another that “whatever you decide will be the right decision for you by definition.” It's this kind of support—practical, personal, and profoundly human—that defines Smart Patients and the strength of the kidney cancer community he calls home.
If you or someone you love is facing kidney cancer, come find support, shared wisdom, and connection in the Smart Patients community.