From Stage 4 to Survivor: Dan’s Pancreatic Cancer Journey

Just before his 41st birthday, Dan, a lawyer from Cleveland, experienced a pain in his legs that led to a stage 4 pancreatic cancer diagnosis. Today, Dan is 45 years old, in complete remission and treatment-free.

Dan sat down for an interview with CURE, in which he shared his story. During the discussion, he shared the moment he learned of his diagnosis, and how he ultimately decided to participate in clinical trials for his pancreatic cancer treatment. He also offers his insights into life-changing medical choices, as well as the importance of advocating for oneself as a patient undergoing cancer treatment.

CURE: Can you walk us through the moment you first received your pancreatic cancer diagnosis and what emotions you experienced?

My pancreatic cancer diagnosis came entirely out of the blue. I'm from Cleveland, Ohio originally, but at that time I was living in Paris, France with my wife and two young kids. I had a nine-month-old and a three-year-old, I was a few weeks away from my 40th birthday, and I had a strange, deep throbbing pain in my left leg that eventually went away, followed by a similar pain in my right leg. Eventually, my wife convinced me to see a doctor because I was mostly trying to ignore it. I didn’t have some sixth sense or any indication that something more serious was going on. I was still in my 30s and thought I might be invincible, so I didn’t consider it beyond that.

One morning, I went to a GP in Paris, and by the middle of the afternoon, I was lying on a CT scanner because they had found a blood clot in my leg and wanted to make sure there wasn’t anything near my lungs. I walked out of that room, and about 20 minutes later, the radiologist called me back and told me I had pancreatic cancer. All of that happened in one very swift series of events. I found out very quickly and violently, in a way.

How did you cope emotionally in those first days and weeks after your diagnosis?

I struggle to remember exactly what happened after I was diagnosed. The memories I have feel wrong (I think I called people that I didn’t, and I forgot that I called people I did), but I was very quickly checked into the hospital, and things sort of unfolded from there.

I come from a family of doctors. My three siblings are doctors; I’m the only non-doctor. But I knew enough about pancreatic cancer that it was a bad one, so it was a pretty devastating diagnosis. When I wasn’t staring off into the distance, I was very often in tears and very scared. I always tried to tell the doctors I didn’t want to know the prognosis; I didn’t want to know how many years. I knew pancreatic cancer is often fatal, but I specifically said I didn’t want to know what that meant in terms of time, because that knowledge felt too much to handle; it was never going to be enough time.

I tried my best not to live with that calendar counting in my mind, which I think in some ways helped. People approach that differently; that was my approach. I wasn’t able to avoid it for long, because eventually a doctor told me without me wanting to know, which sort of pulled the curtain up. But it was a devastating diagnosis. I think it’s a devastating diagnosis for anyone.

From that point forward, we really just tried to get as much information as possible about my disease, about what options were available, and then make the best choice among those options. Sometimes the options were limited; sometimes there were more options on the table than we would have thought. The first choice we had to make was where I was going to do chemotherapy.

What factors were most important to you when choosing your treatment location and plan?

My tumors were in the tail of the pancreas and in the liver, so there was no immediate need or option for surgery, which meant chemo was the path. We ended up flying back and moving to Cleveland to do chemotherapy there, which I think was the right move for me and my family. Even though the system in France is obviously very good, we would have received similar care there, but I had insurance that allowed me to do it, I was nearer to home, and I understood the vocabulary and the health system in the U.S. better than I would have in France.

That was the first of a series of decisions we were required to make. Anyone diagnosed with pancreatic cancer or any type of cancer is often required to make decisions they previously would have been incapable of making, based on imperfect information. I think that’s one of the biggest challenges, making life-changing decisions with imperfect information. That was always a challenge my wife, my family, and my team of people helping me were constantly struggling with.

How did you decide to participate in a clinical trial, and what influenced your decision to pursue an experimental treatment?

I did two clinical trials. The first one was an immunotherapy and a PARP inhibitor. I did Keytruda (pembrolizumab) and Lynparza (olaparib) for about two years, and then the second one was an early-stage trial. Both of them were through Memorial Sloan Kettering Cancer Center.

I knew both from the knowledge within my family and through conversations with my treating doctors at the clinic that chemotherapy was only going to work for so long, or my body would only be able to tolerate chemotherapy for so long. That was not an end state. That was the first step of hopefully at least a few steps.

Once we got settled back in Cleveland, once I started chemotherapy, and once I was settled into that routine, we started asking questions of my oncologist at the Cleveland Clinic: what trials was the clinic involved in? What options and opportunities did they see for me? We had those conversations within the Cleveland Clinic world, and then my family began looking through clinicaltrials.gov. They were comfortable enough with the vocabulary and everything else to pinpoint options based on the genetic markers I had, the stage of the disease (which was stage 4) and the fact that my tumors were responding to chemotherapy. They were able to identify different hospitals and groups around the country engaged in pancreatic cancer trials that I might eventually be eligible for.

About halfway through my chemotherapy, they started sending messages, saying, “Hey, you guys are running these trials. We’d like more information. Could we get a secondary consultation with you?” We went through the whole clinic onboarding process, the insurance process, and ended up having consults with both the MSK team and the MD Anderson team. Through that, little by little, we got more information on what I would be eligible for, and we ended up making decisions about which paths to pursue.

The important thing about that — there are a couple of things. Number one: patients need to advocate for themselves. They need to ask questions as early as possible: “Is this working? What’s next? What can I do next? How can I find out what to do next?” If that involves seeing other doctors, no doctor should be upset that you’re seeking additional opinions. It’s strange, patients facing something as difficult as stage 4 pancreatic cancer won’t necessarily want to let their doctor know they’re seeing another doctor, or they might not want to ask about other doctors because they don’t want to be impolite, hurt someone’s feelings, or think the doctor will get annoyed. Any doctor I’ve met does not think that way.

Patients need to feel comfortable asking for secondary consults, other opinions, and additional opportunities. Not every oncologist has all the information. Different people are doing different things at different times, and treating oncologists aren’t necessarily the same people conducting the trials. The more information you can get, the more questions you can ask, and the more conversations you can have, the higher the possibility you will uncover opportunities your treating oncologists didn’t know existed.

Outside of conversations with your doctor, if you can figure out how to use clinicaltrials.gov, that is a great resource. It’s not very user-friendly, and the vocabulary can be difficult, but ChatGPT plus clinicaltrials.gov can help identify potential trials you can then discuss with doctors who might have other opportunities. I would really encourage people to do both of those things to the extent they can.

Transcript has been edited for clarity and conciseness.

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