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The PancChat Podcast is a collaborative effort from Let’s Win Pancreatic Cancer and the Pancreatic Cancer Action Network (PanCAN), inspired by the long-running #PancChat Twitter/X chat.
Hosted by award-winning journalist Alisyn Camerota, each episode features conversations with leading researchers, clinicians, patients, and advocates who are shaping the future of pancreatic cancer care and research. Together, we deliver expert insights, personal journeys, and the latest breakthroughs—bridging the gap between science and lived experience.
Whether you’re a patient, caregiver, healthcare professional, or simply want to learn more, join us to connect, be inspired, and learn how you can help to accelerate progress in the fight against pancreatic cancer.
Hi, I'm Julie Fleshman President and CEO of PanCan. On today's podcast we will learn about living with pancreatic neuroendocrine tumors, which are also known as PNET.
Alisyn Camerota:Hi everyone. We want to welcome our listeners into the PancChat podcast and to thank our sponsor Revolution Medicines. I'm your host, Alisyn Camerota. In our last episode, we learned about pancreatic tumors referred to as PNET. We learned what they are, how they differ from other pancreas tumors and how they're treated.
Alisyn Camerota:Today, we're speaking with Katie DiCarlo, a patient with PNET, about her personal experience with a PNET diagnosis and her treatment. Katie is from Oakland, California. She was diagnosed with stage four PNET in 2022, and she has many tips for us about managing the disease. Welcome,
Katie DeCarlo:Thanks, Alisyn. Yeah, many tips we will see, but, I'm happy to be here.
Alisyn Camerota:Am I over promising?
Katie DeCarlo:You know, I may have many and there may be many more, but we'll get into why that is the case for this particular disease for sure.
Alisyn Camerota:We'll take whatever you can share of your personal experience and I think it'll be really helpful for our listeners. So I understand that even your road to getting this diagnosis was long and complicated. So do you want to tell us about what was happening before 2022 and then how you ended up getting this diagnosis?
Katie DeCarlo:For me, it was long and that it took about six months from the point of symptoms to diagnosis. And in the world of neuroendocrine cancer and neuroendocrine tumors, that's actually a remarkably short period of time. So while I six months is a long time to not know what's happening with your body, and it was definitely a journey, it is also a quicker journey than what a lot of other people have experienced. Just for me
Alisyn Camerota:stop you for a second, Katie. Didn't know I thought that there were some, I mean, least with the standard pancreatic cancer, there's jaundice, there's pain and there's blood tests. And so to me, when I hear you say six months, that does sound like a long time.
Katie DeCarlo:Sure. Yeah. Well, for this particular cancer, my experience, let's start there. I got sick in the fall of twenty twenty one. By sick, I came down with I had a very severe back pain.
Katie DeCarlo:Like many people who end up getting a referred pain, I had no idea what was happening. I had never experienced that before. I did some wrong yoga move. I happened to be on a business trip at the time. I remember as the week went on Tuesday, Wednesday, Thursday, every night in my hotel room, laying on my back as flat as I possibly could on the cold floor, like trying just to get the spasm to release and doing all the things I knew how to do for injury management and it getting worse and worse and worse instead of even slightly better as you would expect from an injury.
Katie DeCarlo:So by the time I flew home that Friday, I was still convinced it was just something I pulled but my, friend had been doing some research and said that particular part of the back, which is the middle of the back just to the left of the spine, is the specific area that an inflamed pancreas refers pain, which is not common knowledge. I didn't know that. I didn't even know what referred pain was, but they were absolutely right. And they said, You know, I really think you need to go to the I was in enough pain that I was apparently white as a ghost, sweating, and I was told, You should go to the emergency room. Worst case, we're being paranoid.
Katie DeCarlo:And went to the emergency room. They did work. They did run a blood test to your point. I did a lipase lab test and my lipase levels were through the roof and so, it was very easy to diagnose as pancreatitis. I had an inflamed pancreas And at that time in the ER, they did run some basic scans.
Katie DeCarlo:I had a CT scan. The CT didn't show anything. And so from that point, and this was in November, I was told it's idiosyncratic. Sometimes this happens. Go home and heal it with diet, which because this is a pancreas specific conversation, you know, the pancreas is used in all of our food digestion.
Katie DeCarlo:And so I went on a very, very strict diet to avoid any fats, any alcohol, any sugar, and it did help. In the next couple of months, it slowly started to get better. But as soon as I went back to eating normally, I had one slice of pizza, the pain would come right back. And so I was that whole time pushing to see a GI specialist. I had gone to my primary.
Katie DeCarlo:They had said it's idiosyncratic. This just sometimes happens. And I kind of pushed and pushed. And long story short, I ended up getting into a GI specialist who thought maybe it had been like a gallstone that had been missed during the initial CT and ordered an endoscopy. And it was only when they did the endoscopy looking for what they thought was a stone that he saw tissue that, in his words, was either a tumor or the kind of damage that would come from a forty year alcoholic.
Katie DeCarlo:And I'm not a forty year alcoholic. So we sort of knew even before the pathology came back that we were probably dealing with a cancer and or with a tumor. And what happened was my tumor, my initial primary tumor, had grown into a pancreatic duct. And so that is why it was blocking the flow of the pancreatic juices into my digestive system and the organ was literally digesting itself. So that process from ER to the endoscopy was six months for pancreatic, neuroendocrine tumors and neuroendocrine tumors in general, which can start in many parts of the body because there's neuroendocrine tissue throughout our bodies, they actually are asymptomatic until much later.
Katie DeCarlo:I got very lucky that it grew into something where there was a physical block. Often people become symptomatic only after they've spread and grown and become what's called functional. And so the tumors start making their own hormones, and people will go to the doctor with a lot fatigue, flushing, GI challenges. And the reason they go without diagnosis is that the symptoms mirror symptoms of a lot of things, hormone imbalances, lifestyle imbalances, stress, and so this cancer is often referred to as a zebra cancer, because if you've ever heard the saying that, know, don't go looking for zebras when there's a lot of horses, which doesn't really work if you're in a region where zebras are more normal and horses are the rarity, but it's a very kind of North American centric phrasing. Zebras are the rarity and this cancer is sort of people who were told by their doctors often for years, it's your hormones, it's your stress, when in reality it was tumors that were just overlooked because they are not often thought of.
Alisyn Camerota:That is a fascinating trajectory that you've just described and really helpful. So how quickly did they determine it wasn't traditional pancreatic cancer? Immediately. So on
Katie DeCarlo:the endoscopy, I actually the initial endoscopy was non conclusive. It showed some form of abnormality, but it wasn't enough of a sample. So I had a second And the second was enough of a biopsy to know which kind of cell was the kind that had gone. It wasn't called malignant at that point, but that had become a tumor, a tumorous cell. And even though both kinds of cancer originate in the pancreas, it's a different cell that becomes tumorous for this cancer versus what I call the more traditional pancreatic cancer.
Katie DeCarlo:So they could tell as early as pathology on that biopsy that initial biopsy what we were dealing with.
Alisyn Camerota:Okay so six months into this when they see the tumor they figure out what kind of tumor you're dealing with how did they first your doctors approach treatment?
Katie DeCarlo:Yeah. So, because it was caught relatively early and there was no sign of additional spread, I did a scan, which visually showed that there was a something there. They recommended surgery. And so the initial line of defense, because it was localized still, and it was on the distal body of the pancreas, it was on the tail, which can be more easily removed. They said, let's do surgery.
Katie DeCarlo:And I actually went into surgery two weeks later. It was a very fast timeline. And we removed the tail of the pancreas as well as the spleen and about twenty three lymph nodes in the region, with the goal and hope of getting it all. That's not necessarily standard because it is often that when this particular tumor is found in the pancreas, there may already be spread and metastasis to other areas, which makes a surgical intervention maybe still worth it. I know plenty of people who upon diagnosis have still gone for an initial surgery, but it's at least a more complicated surgery because obviously they're removing disease from more than just one organ.
Katie DeCarlo:But in my case, I got lucky.
Alisyn Camerota:And did they quote get it all?
Katie DeCarlo:They quote got it all with the caveat that we now know there's no way that's possible because it did spread. But yes, the initial tumor, the primary tumor is the language used, at least in this cancer, was fully removed with the full tail of the pancreas. And of those 23 lymph nodes, one lymph node showed at the cellular level was the language that was used some involvement, which meant that it had started to spread very, very minimally to that very local region. And the hope and assumption at the time was that, they quote unquote got it all, and I was given, what's called a no evidence of disease
Alisyn Camerota:status. So they thought they got it all. And how did we get to your stage four diagnosis?
Katie DeCarlo:Sure. So the standard protocol for this kind of cancer is monitoring. So even if there's no evidence of disease, you go on a regular schedule of imaging. And because it was new for me and we didn't know yet what was going to happen, they recommended every four to six months. And so I was getting scans, I think, every six months.
Katie DeCarlo:And at the eighteen month mark, so a year and a half after surgery, my regular abdomen, pelvis, MRI with contrast showed liver lesions, which at the point at which it spreads to the liver, it's immediately a stage four diagnosis.
Alisyn Camerota:I see. Okay, and so then what happened with your treatment?
Katie DeCarlo:So this particular cancer, because it's in neuroendocrine tissue, the first line of defence is either surgery just remove it completely or it has receptors for a somatostatin analogue. Somatostatin is a hormone that is naturally produced by the body. And they can do injections where you're essentially put on a one month injection period that gives your body like a slow drip of artificial somatostatin with the hope that you're blocking the growth receptors for the tumors. And so, the first line of defense was to try those injections, while we also then did a biopsy to see if the pathology on the tumors in my liver were any different than the ones that were in my that came back from my pancreas. And so, within the same three month period, I had started these monthly injections but I also got that biopsy which showed that the tumors on my liver were higher grade than the one that had been removed from my pancreas.
Katie DeCarlo:So, the disease had shifted as it had spread to this new location. So, it's pretty sure that the somatostatin would not be effective, given that it was a higher grade, so a faster duplicating cells, but we still tried it for four rounds. And then I did another set of scans, which indicated, yeah, it's it's not doing anything for me. Though for some people with neuroendocrine cancer, they can be on these somatostatin for years, ten year stability, five year stability. I mean, it really, they can be an incredible, considered technically non toxic, they do have side effects, but non toxic from a cancer perspective intervention for a very long time, I just didn't see any efficacy.
Alisyn Camerota:So then what happened with your treatment?
Katie DeCarlo:Yeah, so we switched to, more traditional chemotherapy and I did an oral chemotherapy. So, a combo, it's called Captem, and did that for six rounds, so about six months, with a goal of stabilizing the disease, because it was still small enough in the liver. My liver wasn't having any challenges, but they didn't want to go in and do additional invasive work if there was an unknown amount of growth. Because, as you know, I mean, there may be a there were, I think, 12 or 13 tumors that were visible on the scans but they assume that there are smaller bitty baby ones that they may not know until they get there. They want to have confidence if they're gonna open you up that they're getting all of it that they possibly can.
Katie DeCarlo:So I did what was hopeful six rounds. I did scans during that time period at the six month mark. It showed the disease was no longer growing. It was stable, and my team decided they were confident about being able to do surgery. And so I did a second surgery, this time laparoscopic for what was planned to be both resection and ablation, so cutting out and or burning off the tumors in my liver.
Katie DeCarlo:It ended up being completely ablation. Once they were in there, they chose to ablate all of them. And then from there, additional treatment. I that was the next sort of discrete chapter.
Alisyn Camerota:And how did that work?
Katie DeCarlo:Yeah. This is my favorite. Don't freak out. This doesn't happen to everyone's story, but I ended up in the hospital for six weeks. It was a pretty, domino effect of challenges.
Katie DeCarlo:So, laparoscopic surgery, after the open surgery two years prior, I was very hesitant to have another open surgery. It had taken so long for my abdominal wall to recover. I had had scar tissue after that twenty twenty two surgery that was fine but if anyone's had scar tissue to work through, it's very painful. And when I did finally get back into normal life things, running, doing yoga, it took some months of forcing through that breaking down before that pain went away. So I was just very hesitant to take on that level of, of wound, unless it was necessary.
Katie DeCarlo:So we had agreed that it would be possible to do this removal laparoscopically. But in that domino chain, the first thing that happened was in ablation. They take a very long rod, I don't know what it's technically called, big stick, and they are burning from the center outward the tumor to kill that tissue and then pulling that rod out. And the process of pulling that rod out is supposed to cauterize those wounds. Somewhere in there, a bile duct got nicked and nobody noticed, and so I was internally leaking bile, which the body does not like.
Katie DeCarlo:My abdomen filled with fluid. I had to have a drain inserted. That didn't work. I had to have surgery to remove the extras fluid. That then created an infection.
Katie DeCarlo:I had to have two more drains. At one point, I had an intestinal block. Like, it just was a domino effect of things. So that was its own chapter. Not super fun, very rare, very unusual, but scary and not fun.
Katie DeCarlo:And unfortunately, the plan had been to go through this ablation. I like to call them cohorts. So of the cohorts of tumors, that cohort, the first cohort on my liver, ablate them or resect them, get them done, and then have about a year maybe. The theory was a year, maybe I'd be lucky and have about a year and a half, and then eventually they would come back. I'd have a new cohort to deal with.
Katie DeCarlo:Well, three months after that surgery, my routine post surgery scans, I was still pretty weakened from having been in the hospital for so long, but I went in, and sure enough, the second cohort had already shown up. And so I went... I I don't know, in hindsight, if we would call it, you asked what were the results. The results were the first cohort was ablated and removed and is no longer an issue which is technically a win. But I did not get the amount of time that I had hoped before I had to go into another treatment.
Alisyn Camerota:Man, Katie, talking to you, you are so just plain spoken about it and I appreciate it. I mean I appreciate all of your candor. How were you emotionally getting through all of these different phases?
Katie DeCarlo:Oh, I so appreciate you. Yeah, you can tell, I mean, part of this when you have really, I think, anything intense medical to deal with, you learn how to be your own advocate and in particular, having a rare cancer, having a cancer that has systemic issues. So I have many, many specialists. It's my job to really become the expert on me. But as I said earlier, like, I'm not a science background.
Katie DeCarlo:I, you know, I had to learn all of this. And then there's the whole other side of it, which is the psychological side, and it is a roller coaster. So emotionally, I'm every possible emotion you can think of depending at which point in it. The overarching and recurrent theme is being able to manage not just the episodic but then also the chronic of this is my life. I have a diagnosis that I'm hopefully gonna have many, many years of cohabitating with, but this is my reality, is grief.
Katie DeCarlo:And grief is a cycle. It's nonlinear. And so let's just take that moment where I've gone through this whole experience in 2024. I did chemotherapy. I did surgery.
Katie DeCarlo:I was in the hospital. To do all of that, feel as weak as I was. I got down to 102, which is not enough pounds. And then just to have it come back so quickly. I mean, was really dark.
Katie DeCarlo:I was thinking, what am I doing this for? That was really not fun. And I'm really grateful that there are many people in the overarching umbrella that is cancer, right? It's a very diverse range of diseases that fall into cancer. I'm very grateful that there are many people who get the experience of there being a beginning, a middle, and an end of treatment.
Katie DeCarlo:And we have all these, you ring a bell or you bang a drum or you throw a party or whatever people do. That's real, and that's good, and I love their experience. That is not my experience, and it will never be my experience. And I felt that very acutely at times where it's it's just the depth of a grief moment where you think, well, what what am I doing this for then? And in those days or weeks or episodes, it's really the same feeling as if you've lost somebody because you're grieving the you you thought you knew, and you're trying to accept that this is your new you.
Katie DeCarlo:And, I mean, my version of grief cycles through anger and sadness very rapidly. I had a very dear friend who, shortly after this sort of, like, new cohort showed up, brought me to a rage room. And, you know, those places where you spend whatever is $40 and you just break stuff. And we broke stuff and I cried and I screamed. And I thought I had been journaling and I thought I'd been processing my anger.
Katie DeCarlo:And then we got into that space and I processed my anger. And so there have been moments that like, it's an embodied angry experience, But there are also moments it's much more subtle, and I find myself reactive to, like, friends I have who are planning very long term things because I can't confidently do that. I just, last week, was at the doctor all day for my usual clinic day and had to miss something that I really wanted to do. And I didn't get to do it because I had to go do this thing that I do every three weeks that I've been doing for almost two years now. And it...
Katie DeCarlo:You just kinda... It's always there. The roller coaster, and I don't like roller coasters, but the roller coaster metaphor works for me because some days it's like the really big scary ones that you do the big drops and it's loop de loops and you're like very disorienting, and then it's like, some days it's a kiddie roller coaster And you still are doing the ups and downs and technically you can feel it, but it's like fine. There's... It's cartoony, you know, and that...
Katie DeCarlo:That's how that's how it goes. And I fully expect that around some corner there'll be another big roller coaster because I don't know what the disease is going to do. But right now it's pretty kitty roller coaster.
Alisyn Camerota:I'm happy to hear that and I like that metaphor a lot because it's never just the placid Ferris wheel. When it comes to some form, any form of pancreatic cancer, you never get the Ferris wheel where you just stop and get the long view and it's totally relaxing. You do not get that. So I really like your roller coaster analogy. So what is your treatment currently?
Katie DeCarlo:Yeah, so in January 2025, I qualified for and started actually a clinical trial, which is amazing. So, my area of cancer, there's a lot of nuclear medicine, which is possibly on the table for me in the future, but I've been really hoping to avoid it. What did you say?
Alisyn Camerota:What kind of medicine?
Katie DeCarlo:All the different nuclear medicines. Specifically, and I never remember what the long term is, but there's a thing called PRRT where these tumors have a receptor for positively charged radiation of certain kind, which is how they deliver the payload, to kill the tumors. It's very effective, and it has toxicity risks. You literally are not supposed to be around people for periods of time afterwards because you're so radioactive that you can make other people sick. And that, not only is it doing damage to existing healthy tissue, but it comes with increased risks of secondary cancer.
Katie DeCarlo:It's a wonderful treatment and many, many people do it, but that is something that would have been next for me and I was hoping to avoid, and particularly because for my case, while I do have stage four cancer, the level of disease is very minimal. The largest tumor is three centimeters. If my disease stayed exactly as it is right now, I would definitely die of something else when I'm very old. It is a manageable amount of disease. And so my philosophy on this is I'd like to minimize the damage to my healthy body as we I know we have to go after the disease cells, but trying and trying to find treatments that are as gentle on the rest of me as possible.
Katie DeCarlo:Does your doctor agree with that philosophy? I was just going to say I'm very, very fortunate and privileged to be able to have that philosophy because I'm also, I'm at UCSF, here in the Bay Area and, they have one of the neuroendocrine cancer centers in the country. And so my doctor's a researcher and that is why I'm there and I worked very hard to get my care moved there. But she happened to be authoring a study that is on the immunotherapy and, inhibitor space. It's a...
Katie DeCarlo:And so she said, let's see if you qualify. And I did. It's specifically for neuroendocrine grade three, so the more aggressive of the neuroendocrine cancers, and testing out this pairing of drugs that have been used in other cancers for some time. But it's an immunotherapy, pembrolizumab, and a tyrosine kinase inhibitor, so lindatinib. And I started on that in January 2025.
Katie DeCarlo:And fortunately, knock on wood, have had saw an initial very small amount of shrinkage but then since have been stable and holding steady.
Alisyn Camerota:Happy to hear that. Really happy to Not hear
Katie DeCarlo:without side effects, but totally worth it.
Alisyn Camerota:Yeah, yeah. Is your best piece of advice for where they start, if they're listening right now, to find a community? Yeah, finding a community is critical.
Katie DeCarlo:And finding a community that is can be I'm going to say on call be accessible as a sounding board or as a place to ask questions for the long haul. Because it's not something you're going to learn overnight. You're going to get information that changes, you know, or more information as things evolve as you're on the roller coaster. And so finding whether it's an online forum because somebody's already on social media, whether it's a couple of people who are in the mentorship space specific to the cancer, some people like Reddit, wherever it is that you can go with your questions, and, people can crowdsource their experience. I do that all the time.
Katie DeCarlo:Even as a kind of research junkie, I do that all the time. Hey. I'm thinking of doing this. I'm also on those a lot, providing my experience to people, and so it becomes bidirectional. I also have, as a alternative to community, because you really are just crowdsourcing kind of anecdotal but real stories about how people have navigated these choices, more and more I'm having, I call them my cancer friends, friends in the space who have the same diagnosis are using different AI platforms to help shorthand the Internet's research.
Katie DeCarlo:That is a huge grain of salt because you're asking a machine to think for you, and so you have to be... Obviously, it's not the equivalent of medical device, but it's a great shorthand. Hey. I'm considering doing a clinical trial that is pembrolizumab and lenabatinib. Those are the science names my doctor gave me.
Katie DeCarlo:I don't wanna learn about them. I don't wanna think about them. Like... But I need to know what are the... Whatever your question is, it's an entire piece of software that is designed to act as a hive mind, which is the equivalent of finding a community with the grain of salt that it's not human, and so you have to think about that.
Katie DeCarlo:But, there's a lot of compelling research and additional kind of thinking around how artificial intelligence can be useful for laypeople like myself navigating their medical care and it's pretty awesome.
Alisyn Camerota:I really like hearing that because it's either that or the apocalypse, you know? Yeah.
Katie DeCarlo:I'm also concerned about.
Alisyn Camerota:Yeah. So so I prefer this one that you're describing. That is a wonderful way to use it and I totally take your point. If it can synthesize the information without you having to have a PhD in it, that would be great. So Katie, you've been so helpful.
Alisyn Camerota:Just a font of information for us. What have we missed? What else would you like to say about this?
Katie DeCarlo:So there are two things. Three things. The first... And actually this just happened earlier today. I was catching up with somebody who I haven't seen in twenty years from a teacher of mine in high school.
Katie DeCarlo:She's amazing. And she knew I had something happen. She knew from social media there was some kind of diagnosis. I've been very open about it, but she didn't know the details. And I was giving her the story, and it starts with, they found a tumor on my pancreas.
Katie DeCarlo:And I'm cognizant of the audience here, you know, with this being a pancreatic cancer forum, but with this particular thing, with PNET, finding a way very gracefully but very early to be able to tell people which of the pancreatic cancers we're dealing with matters. Because as you very well know, what we traditionally call pancreatic cancer is a completely different disease, and it is scary and aggressive and has its own treatment protocols, and people are familiar with it as something to react to as though, I mean, it is at the calibrated level of seriousness that it deserves. My cancer is serious. It's cancer. It's not like that.
Katie DeCarlo:It is not like that. And I have, learned that the average person doesn't know the difference unless you explain it to them. And so having some, like, maybe cute, maybe not, but proactive way of differentiating those things saves you from a lot of people on the other side of the conversation overreacting or differently reacting to the situation that you're in. And that's helpful because it leads into the second thing. It was very helpful for me to shift in thinking about my cancer, neuroendocrine cancer, as being not capital C Cancer that we think about them all being the same, but it is chronic disease that probably almost certainly will shorten my life, but it is not the same kind of disease management and treatment as, and we talked about, more episodic cancers.
Katie DeCarlo:So the analogy, I have a cousin who has Parkinson's. He's older than me, he was diagnosed some years ago. It is a, you know, slowly debilitating disease. It will possibly shorten his life. But we think of it in those terms.
Katie DeCarlo:He lives with it, he manages it, he's in regular care for it. I try to think about my cancer as similar to that versus cancer as you stop your whole life, you go and you treat it, hopefully you're quote unquote a survivor or a win, and then you go back to your regular life. This is my regular life. And I think that that's true, not exclusively for neuroendocrine cancer, but it is a major way in which neuroendocrine cancer differs from a lot of the other cancers and, and psychologies of cancer. And it took me a while to figure that out, and it was kind of lonely in the process there for a while.
Katie DeCarlo:Because we talked about community, having a rare cancer is a weird thing, and having a rare cancer that looks different in everybody's bodies is also a weird thing. Maybe your average listener won't need this permission, but I needed permission to, like, reject the places where community didn't fit for me. So, for example, I technically qualified as a young adult with cancer when I was first diagnosed. But a young adult was 37. So an older young adult, but technically a young adult.
Katie DeCarlo:And a lot of the young adult cancer space is very survivorship based, which is wonderful because people have these cancer experiences, and then it's a lot of resources in helping people acclimate back to life now that they're past that chapter. It was deeply triggering for me. It was not the right space for me to be in. And then I felt though, because this was my demographic, this was my age demographic, that this was the, quote, unquote, right place, and I had to learn. If it doesn't fit, it doesn't fit.
Katie DeCarlo:Or if you get like one tiny bit of help and then you leave the young adult cancers, fine, whatever. Everybody deals with this differently. This is true in the neuroendocrine space. There are people who I connect with very deeply. There are some people whose way of coping and managing is very different than mine.
Katie DeCarlo:I don't have to like everybody. They don't have to like me. And there's just kind of a... I don't know. You share this thing and you wanna immediately connect, but remembering we're all just human and, like, giving yourself permission to also opt out of community when you need to was very helpful.
Katie DeCarlo:Katie, who couldn't like you? The... Give me their names. That's Oh, I mean, they will volunteer their names on the comment section. I am sure.
Katie DeCarlo:Yeah. But I appreciate that. So that was really helpful. I don't know if you have any interest in... If your audience would have interest in age specific considerations.
Alisyn Camerota:I don't know. I don't know. Meaning what?
Katie DeCarlo:Well, like, I was hoping to still parent, when I was diagnosed, and I made the decision not to parent as a result of my diagnosis, which was really hard. And, you know, if people are diagnosed and they already have children, that's a separate kind of hard. But, that was part of the journey that isn't specific to my cancer necessarily, but the fact that I am physically able to I feel okay. But I technically, you know, like statistically speaking, I wouldn't be around to see the kid turn 18. It just felt irresponsible to make that decision.
Katie DeCarlo:And that's weird. It's a weird thing to have... I tell people all the time, the doctors can look inside my body because we have these magic machines, and they can tell me what's happening. And because of these magic machines, knowing that there's a disease in me that we also know will probably eventually reach this point, I am now making some of the most profound life choices. That doesn't feel real, but you have to do it.
Katie DeCarlo:Right? And I'm not saying I made the only choice to make. There are many people who might make a different choice. But just just reconciling that, like, big... You asked about the emotional side of it, which is more of, the day to day, but at these very big levels, I've changed careers.
Katie DeCarlo:I decided not to parent, I have had relationships come in and out of my life as a result. It is a profound change, that I don't think anybody told me. I think a lot of people try to make it, not minimize, your life is the same. Keep on with your life. Keep going.
Katie DeCarlo:And if you like your life, that's great. But like, I don't know how it doesn't change you.
Alisyn Camerota:I hear you and I again I really appreciate your candor about that. This is a life changing diagnosis. I don't see how it wouldn't be. It is and that's part of the grief journey that you talked about because whatever you imagined for your life this is gonna be different.
Katie DeCarlo:That's exactly right.
Alisyn Camerota:So yeah I think that's really helpful Katie. That is really really helpful for everybody listening to hear about how you're soldiering through it. That's all I had. Is there anything else you want to say?
Katie DeCarlo:Since being diagnosed there are already more and different treatments available. It is moving very fast. It is a challenge being in a space that gets care gets the treatment options a little bit later than other cancers, but it is also, I guess, a benefit in that there's a lot still to be rolled out, which people told me when I was first diagnosed, and I sort of thought they were just being Pollyanna ish. It's very true. Even in the short period of time that I've been dealing with this, there are options now that didn't exist and that's pretty cool.
Alisyn Camerota:I agree. We're in a real, I don't even know if we can call it a renaissance, more like just a groundbreaking era of cancer treatment and it's nice to be at the forefront of that and to be able to talk about that which we do on this podcast often. There are treatments that had we started this podcast three years ago didn't exist. Yeah. And so that is very heartening I know for me to be able to talk about and for our viewers.
Alisyn Camerota:So thanks for pointing that out. Yeah. It's great to talk to you.
Katie DeCarlo:Yeah likewise. This has been really lovely. I appreciate it.
Alisyn Camerota:Thanks. Thanks so much, Katie and thanks to all of our listeners for tuning in. We appreciate you being here. Thanks to our sponsor, Revolution Medicines. I'm your host, Alisyn Camerota and I'll see you next time.
Cindy Gavin:Thank you, Katie and Alisyn, for that meaningful discussion. I'm Cindy Gavin, CEO and Co Founder of Let's Win Pancreatic Cancer. If you or a loved one has been diagnosed with PNET or any other type of pancreatic cancer, navigating this journey can be extremely overwhelming. But you don't have to do it alone. Explore the pancreatic cancer resources, including PNET, available for patients and caregivers at Let's Win and PancCann.
Cindy Gavin:You can find PancCann at pancan.org and Let's Win at let'swin.org. Together, Let's Win and PancCann are committed to guiding you through every step of the pancreatic cancer journey, offering support, information, and hope. In our next episode, we will be learning more about the symptoms of pancreatic adenocarcinoma and the importance of early detection for Pancreatic Cancer Awareness Month. Follow the PancChat and get episodes each month on all major podcast channels where you get your podcast feed. We will see you in November.