Meet Burt Rosen: Adventures With a Stage IV Pancreatic Neuroendocrine Tumor & Kidney Cancer

On July 1st, 2022, I was admitted to the hospital for liver failure, an ammonia buildup in my brain, and internal bleeding. Because of the life-threatening internal bleeding, they scanned me all over the place. In those scans, they found out that I had two forms of cancer (renal Clear Cell Carcinoma (Kidney cancer) and Pancreatic Neuroendocrine tumors (which is uncommon and metastatic with spread to my liver) I don’t like calling July 1st my cancerversary because an anniversary should be a celebration but I don’t have a better name yet. My endocrine system cancer originated in the pancreas. That’s the cancer that was Stage IV, all the bad, scary words, and had already spread to my liver. Because I was bleeding internally, my internal monologue at diagnosis was, “OK, I have cancer, and I’ll worry about that tomorrow. Let’s not die from the bleeding today.” 

I was in the hospital for two weeks, and they stopped my internal bleeding. After I got out, I found an oncologist and started to really learn about cancer. I refer to cancer as ‘the world’s most successful unintentional marketing program.’ When you want to build a brand, you want people to associate a certain emotion with it. Now, when someone says the word “Cancer,” doesn’t “Death” automatically pop into your head? I spent the first few weeks thinking,  “When am I going to die? How am I going to die? Who do I want there when I die?”

My dwelling on death was because of me feeling out of control. I’m not a control freak, but I do like to learn. So I put my energy into learning a ton. I joined every support group I could find. Zoom, bulletin boards, Facebook groups, anything that could teach me about my specific disease and what living life with cancer is like. I talked to a ton of people and learned a ton.

My first treatment was an oral chemo called capecitabine and temozolomide. The oral chemo was on a 28-day cycle. I saw good tumor shrinkage from taking it, but I also saw lower blood platelet levels. I did seven rounds of that oral chemo until my platelets dipped too low. The doctors focused on treating the neuroendocrine tumors first because they didn’t want the kidney cancer treatment to affect my neuroendocrine cancer treatment negatively. 

Three months later, I had a major liver resection. They removed the left lobe of my liver and 17 tumors on the right side, along with my gallbladder. The doctors had also planned to remove the primary of my pancreas and my spleen, but the liver resection caused me to lose too much blood, so they had to stop. I am still in the middle of a staged surgery and have yet to have my primary and spleen removed. I am not in a hurry to do it since I’ve been stable.

After that surgery, I transitioned to my current treatment, a Somatostatin Analog shot (Lanreotide) that I get once every 28 days, again focused on treating my neuroendocrine tumors. I also get scanned roughly every three months.

The neuroendocrine tumor is treatable but not curable. I will die with it, but hopefully not from it. The kidney cancer is curable; they just have to remove part of my kidney. I will be in active treatment for the rest of my life. I’m stable, still with a lot of cancer inside of me, but it isn’t spreading.

The doctors claim that my cancers are unrelated. What I’ve learned throughout this journey is that ‘Unrelated’ means that the doctors don’t know how it’s related. The technology and knowledge aren’t there to prove how they might be related. My belief is that I’m a finite being. If I have two cancers inside me, they likely started from a common point. Whether it’s a faulty immune system or a faulty type of cells within me, there’s likely a common thread.

I’m never truly “happy” when I receive stable scans. It’s like you’re rooting for a tie. I feel like I'm stuck in a mud puddle up to my chest. My scan shows that I didn’t sink any further into the puddle. How do you get excited when you’re still in the puddle? You were hoping to get a little bit more out of the puddle, but you’re stuck in the same spot. You’ve always wanted to make progress in life, but now you’re rooting for things to just not get any worse. It’s a whole new feeling for me!

Scanxiety for me is learning about what I may or may not be able to do after receiving the results of my scans. If my scans show that I have more tumors, I have to start doing treatment. My scans never show less cancer; my only options are stable or disease progression. I’m worried that my doctor will say, “You need more treatment in two weeks, and it will knock you out for three months.” So, my anxiety stems less from the diagnosis and more from what the diagnosis implies about how I will live my life.

What would you like people to know about your types of cancer?

If you have chronic health symptoms like IBS, you should ask for a full body scan. IBS is a label that is often given when the true cause could be a deeper underlying health problem. If you have constant flushing, diarrhea, vomiting, nausea, and heavy fatigue, those could be symptoms of neuroendocrine tumors. These types of tumors often don’t get diagnosed early. If you’re showing these symptoms, ask to be checked. 

Given that my cancer is treatable but not curable, I’ve put a huge focus on mental health over physical health. I get a shot every 28 days, so I’ve changed my life in other ways. I exercise as much as I can. My diet is much cleaner than it used to be. I try to meditate daily. I do intermittent fasting. I try to walk outside often. My oncologist wouldn’t consider this treatment, but I consider them integrative treatments. I saw a quote on Facebook “I will not die while I’m still living.” That was an important one for me. I try to enjoy life as much as I can. My other favorite quote is, “Cancer is a weed, we need to tend to the garden” (paraphrased from Donald Abrams at UCSF).

I had my scans recently. A few days after my scan, I received the all-clear and prepared to plan my life for the next three to four months. I have fun things to look forward to. I don’t want my entire identity to become my cancer. I’ll never call myself a cancer patient. I’m Burt, who has cancer. I’ll say I have cancer, like I have eczema or a bad stomach.

Cancer itself may not be a chronic illness for some as they may reach remission and end treatment. For them, cancer treatment may lead to other chronic illnesses. As soon as you have cancer, you’re likely going to become a part of the chronic illness community. Whether that be chronic pain, neuropathy, chemo brain, or another diagnosis. Cancer kills good cells along with bad cells. Radiation, even if it is targeted, is still radiation inside your body. It’s very easy to let cancer consume you and become you. Understanding that this is a part of me has been really important to me.

What has been your journey with integrative oncology?

I volunteer in integrative oncology because there are so many ways people can improve their health without medication or pharmacological treatments.

“Alternative” is when you say, “I don’t want that treatment, I’m going to do this instead.” You’re rejecting something and replacing it with something else. 

“Complementary” is when you say, “I’m going to accept this treatment, and then I’m going to do these things to help me at the same time.” 

“Integrative” is when you put everything on the table and figure out what makes the most sense across any modality. Complementary and Integrative are both science-backed and evidence-based. 

Another important lesson that I’ve learned is that just because something hasn’t been proven to work doesn't mean that it doesn’t work.

People often lump those three words together, but they mean different things. I volunteer with the Society for Integrative Oncology. Cancer Choices is a great patient resource for integrative oncology. Anti-Cancer Lifestyle is another great resource that offers a free course on where to get started.

How has your life changed since receiving your diagnosis?

My guiding principles helped me to think through what matters to me the most. It brought my purpose into focus a lot more. I stopped caring about being so ambitious in my career. At my last job, I remember having discussions about how I could easily replace the CEO if they were to step down. I was already the Chief Revenue Officer and wanted to grow further in the organization. Now, I don’t care about that. I don’t care about titles, I just want to work with great people who want to change the world. I need money to pay the bills, but I’m not driven by money. My mindset has completely changed.

After cancer, I’ve also become a lot more honest. I’m more engaged, appreciative, and aware of everything around me. There’s a lot to be said for facing your own death. You wake up and learn to appreciate things much more, learning how to put things in perspective. Things that used to drive you crazy don’t matter anymore, right? You want to only put time into the things that matter to you. 

Someone once said to me, “Cancer is like a gift wrapped in barbed wire.” I don’t think it’s the greatest metaphor, but everybody understands what it means. This is a controversial take, but cancer actually taught me a lot. Obviously, I never wanted to die, but having cancer made me appreciate my life much more. If I’d never received this diagnosis, I would have still been on the toxic working treadmill.

I’ve come close to death twice in the past two years. Once, I was having an upper endoscopy and almost didn’t wake up due to losing too much blood. Then, after a major surgery, they didn’t cap my IV correctly. They had to intubate me afterward. Now, every time I go into a procedure, I think about how I might never open my eyes again. How do I make sure that I’m happy with everything I do before then? I always want to make the most out of my time, but I also don’t want to put pressure on myself to enjoy it. 

Once you face your mortality, nothing else matters. You’ve faced and lived through things that other people haven’t. Here’s some advice: Get a Therapist. Anybody who goes through cancer should go to therapy. 

The way I approach life has changed a lot. I wouldn’t say I’ve completely written people off, but I don’t put effort into relationships if I don’t see that effort being two-way. I have also made an effort to rekindle relationships that I have lost and that were important to me.

Photo courtesy of author.