By Anne-Marie Green, Director of Digital Communications
We recently spoke with Burt Rosen, who was diagnosed with both an advanced PNET (Pancreatic Neuroendocrine Tumor) and Kidney Cancer (Renal Clear Cell Carcinoma), in 2022. Burt serves as a resource and supporter for fellow neuroendocrine cancer patients, and in this interview he shares his positive approach to living life with chronic disease.
Can you start by sharing a bit about your background—where you’re from, what you do for work, and your family situation?
I grew up in Manhattan, moved around quite a bit after college and ultimately settled in Portland, Oregon about 16 years ago. I absolutely love Oregon—it’s an amazing place if you like the outdoors. The vibe is so laid back, which fits me really well. I’m not formal at all.
I’ve been in marketing my whole career, working at agencies and various companies including Starwood Hotels, KinderCare, a healthcare startup, and an education startup. Now I’m Director of Marketing Innovations at Oregon State University. Basically, my job is to help elevate the brand for Oregon State.
I live with my wife, have two kids aged 24 and 26 who both live in the LA area, and we have a small dog named Cleo who I wish liked me more.
How did you learn that you had neuroendocrine cancer and kidney cancer?
I had chronic Lyme disease and had some really stressful jobs. I was unemployed for a while, and in May 2022, I went to a conference in Boston to pursue consulting work. I had the worst brain fog of my life. I couldn’t text anyone, couldn’t email, would lose my phone, and couldn’t order food from my hotel room. It was really bad. My wife and sister said “Get on the next flight home,” so I did.
I went to my naturopath who helped take me out of the brain fog. A couple months later, it came back and I declined pretty quickly and ended up in the hospital. They found that I had a big ammonia buildup in my brain, liver function issues, and two burst ulcers that led to internal bleeding. My abdominal cavity was flooded with blood. It was horrible—I ended up having to be intubated, put under general anesthetic, and woke up with a catheter in the ICU.
As soon as you have internal bleeding at a hospital, they start running scans. In the process of getting scanned, they found the cancer.
The way I personally found out is quite a story. I was in the hospital for internal bleeding, and they did an upper endoscopy on me and accidentally nicked something, flooding the whole cavity with blood. I remember moving to a general care room, and the GI physician who did the upper endoscopy came in with some residents. I was becoming more coherent, and I just remember him looking at my wife and whispering, “He knows he has cancer, right?” I had no idea I had cancer—that was how I found out.
My diagnosis was pancreatic neuroendocrine tumor that had spread and renal clear cell carcinoma—two distinct primary cancers.
What were your symptoms before this hospitalization? Was brain fog really the main symptom you were experiencing?
I’ve had some skin issues, brain fog, and chronic digestive issues for years. I had Giardia, chronic Lyme, and several infections due to chronic Lyme. I like to pretend I’m healthy, but I’ve had a lot of stuff going on.
I didn’t get admitted because of symptoms per se, aside from horrible brain fog and internal bleeding. It wasn’t like I went in trying to get diagnosed multiple times. I’m not that self-aware. If I have a symptom, typically I just try to work through it rather than figure out what’s causing it.
Having a Lyme diagnosis makes it hard because Lyme can present in so many strange ways. It’s so hard to tell what symptom comes from what issue. Even now, is my fatigue because of cancer? Is it because of Lyme? Is it because I have both? Is it because I’m on Lanreotide? You just have no idea.
Your doctor mentioned a “kick-the-can strategy.” Can you explain what that means?
Early on, when I didn’t really know what was going on or what my outcomes were going to be, I asked my doctor, “What’s our strategy? I’m a marketing and business strategy person, so what’s the strategy we’re going for? Are we going for NED [No Evidence of Disease]? Are we going for delay?”
He replied, “We’re going for a kick-the-can strategy.” When I asked what that meant, he said, “There are new treatments coming out all the time, so the goal is to try to continue to buy more time to get to the new treatment.”
When I had surgery, that was the goal: not necessarily to remove all the cancer, but to reset my clock. Even now, as I’m about to start PRRT, we had a discussion with my all-star team of doctors, and the three of them agreed that PRRT would help me kick the can down the road further.
How has your neuroendocrine cancer diagnosis impacted your day-to-day life and changed your perspective?
It’s changed everything on a whole bunch of different levels. Starting with physical health—I honestly feel like even though I have a cancer diagnosis and still have chronic Lyme, I’m probably healthier than I have been in a long time because I’m more focused on it.
I got really interested in integrative oncology quickly. My big question after meeting with the oncologist was, what else can I do? Western medicine can’t really answer that question. So I started doing my own research and discovered the field of integrative oncology, which is evidence-based, science-backed, studied, and practiced in many of the major cancer centers around the world. I recently worked with the society to release a guide that serves as a helpful resource.
I started doing things like yoga, eating better, meditating, some intermittent fasting, supplement protocols, acupuncture, therapy and more. I really expanded what it meant to take care of myself.
On the emotional side, anytime you’re faced with your own mortality, it wakes you up. That was certainly the case for me. All of a sudden I was thinking about, okay, what if I don’t make it out of this? What are the things I want to do and want to experience?
In some ways, I probably take more risks. I’ve jumped out of airplanes for two years in a row on my diagnosis anniversary. I took a solo trip from Portland to Glacier National Park to Banff and back, camping and hiking by myself in Glacier three months after a major liver resection. It’s definitely focused me more on enjoying my life and trying to live my life as much as I can.
You mentioned developing some guiding principles. What are they?
Following my diagnosis in July, during the Jewish holidays in September I decided I was going to go take a walk in the woods for a couple hours and just think about life and the world. No podcast, no music, no distractions.
I came out of that walk with three things that were my guiding principles: heal myself, help others heal, and help others who help others heal. I added a fourth one a year later: better support my friends and family. That was a reminder that I’m going through this, but they have their own challenges and I need to be there for them too.
Those four things have really driven me ever since. Most of the decisions I make align with those four principles.
You have a tattoo that says “Just Be.” Can you explain the meaning behind it?
I got my first tattoo,”Just Be,” to remind myself to always stay in the present, to focus on where I am, who I’m with, and who I am. I figured if I put it on my wrist, every time I look at it, I’m going to be reminded to stay where I am. Someone also just said to me, “be where your feet are” which is another reminder to stay present. I love that quote!
I don’t have a lot of anxiety about stuff because most of it just is what it is and I am not an anxious person by nature. I don’t really want to play the “what if” game. That’s what “just be” means to me—to not play the what-if game because it’s not productive and you just don’t know. So why worry about it?
But I’m not perfect. PRRT will be the first new treatment I’ve had since my liver resection, so I’m slightly nervous about that. My therapist has helped me with tools to focus on what I can do in the moment to help myself rather than worrying about future scenarios.
You started your own Facebook group called “Adventures with NETs” What’s your approach to running the group?
The group is now over 1400 people and is growing organically without any active promotion. Its intent is to have no judgment. My only rules are no politics, hate, or religion. I don’t ban people unless they spam or try to sell something.
My operating philosophy, which is how I look at the Facebook group, is: you do what works for you. I don’t care what I think, I don’t care what the establishment thinks. If you think ice skating and whistling while you’re ice skating helps you feel better, go do it. It’s not up to me to judge. I want everyone to feel heard and part of something, not alone.
You’re very involved with AI in healthcare. How are you using it in your care now and how do you think we’ll use it in the future?
I use AI all the time for everything from reading scans and translating them into English to asking about treatments. I actually launched an AI bot called NET Sherpa, which focuses on neuroendocrine cancer. I ask it everything, such as questions about PRRT and Lanreotide, or long-term effects of treatments, symptoms, tracking, analysis, etc
I think the promise is that as AI gets better, it’s going to be able to provide real precision, personalized, and individualized medicine. We’re not there yet, but I envision a time when all pharmaceuticals are built on demand based on all your issues and attributes.
AI is revolutionizing the doctor-patient relationship. I wrote a blog post called “From God to Expert to Input.” When I was born in 1965, you didn’t question your doctor—you did everything he said. In the late ’90s, you’d go to Google after seeing your doctor. The next phase is where your doctor is just another input into your medical team—AI is on equal footing with your doctor.
How has NETRF been helpful in your journey?
The resources offered by NETRF are great. I love the focus on Thrivership—that’s really important to me.
I also appreciate that NETRF is a good bridge between the patient and medical communities without pushing too far in either direction. If I had a dollar for every time I referenced “find a NET specialist” on the NETRF website, I’d be rich. I use it all the time.
Any final thoughts you’d like to share?
I’m driven by trying to help more people. All I want to do is help people—I don’t care about building my own brand. I just want to make a difference for people. It’s selfish, completely. It makes me feel better that I can help other people. Every time I give someone advice and they say it was helpful, it makes me feel great.
The longer you go through this, the more you realize that finding information about cancer treatments is really easy. Finding information about the experience of living with cancer is much more difficult. That’s why my blog focuses more on my experiences of living with cancer rather than my neuroendocrine treatments.
Interested in driving research breakthroughs by supporting NETRF? Burt suggests you make a gift in memory of his friend Stephanie Hruby.