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[Music] This was the proposal we did. I'm 60 years old. I live in New Haven, Connecticut. And I have a wife and two children. And it was just a long sort of warrant coming in. And I've been an architect for over 36 years.
He is on the go constantly and has always been fit and extremely healthy. I like to be active. I'm often running, playing soccer in the park with a regular group.
[Music] I love to sail. It's a deep passion of mine. The wind, the sun, the sounds, uh even the smells. It's just a great escape for me. In in 2019, our family set sail on a sailboat. It's a something we had dreamed about doing for many years. We traveled in the Mediterranean. It would sort of come and go as a problem. During our year abroad, my gastrointestinal troubles did continue, but they were manageable. It wasn't until 2020 that I learned what I had while investigating other medical issues.
My name is Anthony. I have neuroendocrine tumors or nets. Neuroendocrine tumors or nets are actually a very heterogeneous group of cancers. They originate from neuroendocrine cells that are scattered throughout the body, most commonly in the GI tract and in the pancreas. Um, but they can originate also in the lungs and other body parts. They can also, if they are metastatic, can spread to other places. So, if we're thinking about GI neurendocrine tumors, they can spread most commonly to the liver and lymph nodes. This is cancer that doesn't have a known cure. I didn't learn about this till I was a stage 4 cancer patient. Neurendocrine tumors were first discovered a 100 years ago by a German pathologist who coined the term carcinoid. It means cancerike. It was really only in the early 2000s that these were in fact considered cancers.
[Music] I was experiencing unusual bowel movements, poorly formed, and I sought medical attention about that. early thought was that it was Crohn's disease and um that's what we were treating for. So he had had an ultrasound for uh what turned out to be a bladder stone and when the report came back they said you know there's a stone there but we also see things on the liver and you need to follow up with that.
[Music] So, a follow-up MRI revealed that I had several lesions on my liver uh as well as a a very large mass on my pancreas. It was a terrible, terrible couple of days because we assumed or worried that this might be adno carcinoma which is famously aggressive uh and and deadly uh pancreatic cancer. It was December. I just started taking pictures of everything he was doing because I assumed this is the last Christmas.
So for patients with NETs, I often hear the story that they have a delayed or misdiagnosis. And I think this is in part because many of the symptoms patients may have may be non-specific may be very similar to other GI ailments. Um patients may have bloating or mild mild abdominal pain or a little bit of diarrhea or patients may just not have symptoms at all. I just encourage both doctors and patients to really listen to each other. Patients need to be persistent, but I think doctors need to have some of these rare conditions on their radar screen. I'm still frustrated that um there wasn't more curiosity about the pattern of things back then. If it was caught earlier, it might not have been stage 4 when it was discovered.
[Music] A newer technology is a gallium 68 dotatate PET CT which is excellent at helping tell us the extent of the disease. So there was a ultrasound guided biopsy of my liver. When we got the official diagnosis that it was stage 4 pancreatic nets uh with metastases to the liver which uh you know was quite advanced it was extremely upsetting sobering u it there's kind of a before and after changed a lot of aspects of our lives we try to handle it with a lot of humor a lot of patience uh I did surgery at Yale no human hospital to remove my pancreas. Almost all the lesions on my liver were taken out. Some were inaccessible and remain. Lymph nodes were taken out. And as part of this replplumbing they do with your pancreas removed, uh my gallbladder was removed, my spleen and sort of parts of the small intestine right up at the top where it around the pancreas. So, it was a big surgery and a lot uh a lot to go through. My wife Amy um described diabetes as the door prize uh I got in the hospital. I'm a type 3C. It's for someone who's without a pancreas entirely.
[Music] Separate from my diabetes management, I also have to monitor and treat my cancer. So, he just had his best A1C ever. Oh, yeah. Yeah. That's fantastic. So, that's good news. After a year of monitoring, some of our scans showed that uh lesions we had been tracking were growing and Dr. Coons thought it was time for a next step. A very common treatment for patients with metastatic GI neurendocrine tumors um when they are first diagnosed is something called a sematastatin analog. A hormone treatment, not a male or female hormone, but one that really helps block the hormones involved with neurotransm.
[Music] Ways in which we as physicians help make treatment decisions rely on a number of different variables. They rely on the stage of the cancer, how fast maybe the cancer is growing. So that's the pace of growth, what symptoms a patient may have. We make a decision together. The myself as the physician and the patient. I really consider them a partner in that decision- making. My hope for you is that it kind of you start turning the corner a little bit. Yeah. I'm I'm very hopeful for the future in terms of new therapies, new diagnostics. Prior to 2011, we had two approved treatments for neurendocrine tumors. And since 2011, we have had, you know, every few years something new um that's FDA approved. One newer treatment is called lutissium dotatate. It falls under the class of peptide receptor radionuclide therapy or PRRT. It's a targeted form of radiation. It knows to hone in and attach directly to the nerdocrine cancer cell based on the presence of a receptor that lives on that cancer cell. I think this has really changed and revolutionalized how we treat patients with neurendocrine tumors.
So this has been um quite a journey. The the lriotide treatment that I'm doing right now uh seems to be working. uh we monitor and um are keeping an eye on this cancer to see how it progresses. When a patient with a metastatic net is on treatment, we typically will monitor them every 3 to 6 months with an MRI or CT scan. It helps teach us if the cancer is remaining stable or growing or if there are new spots. We not too long ago um discovered some lesions where the cancer has spread to my spine. And so we've um specifically treated that with a short course of radiation to try to both help with pain and help reduce the risk of fracture. So Anthony is doing great right now. I think he's um a remarkable man and I think really has done a wonderful job of balancing um focusing on what matters to him and his family.
[Music] I think the best advice I have for other caregivers is just be in real time doing the things that he likes to do. helping in ways that you can and and stop thinking so much what might happen next in the illness. As we travel this road, there are always new developments and new challenges that come with this and our philosophy and our mantra is to just say, "Okay, onward." It's not as easy as it was uh before he was sick, but he's taking it on in a way that I find really inspiring. Nice job, buddy. I just try to try to get a little zen about uh many of these things happening. Uh and and just know that it's part of our rich history. And maybe I would trade out of this if I could, but uh it's part of life. So, we're going to jive. I want to go out that way. And I've had just a hard and profoundly rewarding experience through all of it.
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