COLONTOWN Presents: CRS-HIPEC patient experiences and decision making for colorectal cancer peritoneal metastases: Drs. Godfrey & Kopecky (2026)

Manju George 0:00
Hello everyone. Welcome to Doc talks. I’m Dr Manju George, the Scientific Director at PALTOWN Development Foundation, the nonprofit that supports COLONTOWN. Today, I’m really excited to welcome you all to this COLONTOWN presents Doc Talk, where we will be discussing decision making around CRS/HIPEC, and we’ll also hear from our esteemed panel that comprise of two surgeons, patients and caregivers from COLONTOWN. So we are waiting on one of our surgeons, so I’m going to have Dr Godfrey start the presentation, but first of all, let’s go around the room and do some introductions. So Dr. Godfrey, you’re up first.

Dr. Godfrey 0:47
Hi so my name is Elizabeth Godfrey. I’m a surgery resident at Yale New Haven Health up in Connecticut. Many of you probably know Dr. Kiran Turaga, or of him, he’s one of my scientific mentors here. I’m originally from Texas. Before I was up in Yale, I just finished, two years of dedicated research time studying clinical science, data, informatics and sort of how we make decisions about patients based on the information that patients share with us, either things that are volunteered and talked about, or things that come from the chart. So part of that was the study that I’m going to talk about today, called decisive which is about decision making for patients thinking about cytoreductive surgery.

Manju George 1:38
Okay, thank you so much. So I’m going to start based on the people that I see on my screen. So Laurie, you’re first.

Laurie 1:47
My name is Laurie Hammer. I’m from Greeley, Colorado. I was diagnosed with colon cancer July of 25 I had the, I don’t know all the lingo, but I had the emergency surgery afterwards, and then was diagnosed stage IV in November, with the peritoneal yes, the peritoneal metastases.

Manju George 2:15
Okay.Thank you. Eric. You’re next on my screen.

Erik Groothuis 2:19
Sure. So. My name is Erik Groothuis. I was diagnosed in April of 2023 with a right sided tumor. I had a hemicolectomy in July of that year, I had a confirmed recurrence the following fall, so fall of 24 and then last year, in July, I had CRS as well as HIPEC, I’m currently not on treatment, just scanning.

Manju George 2:45
Okay, thank you. Melanie, you’re next.

Melanie Sapp 2:48
I’m Melanie Sapp, and I am the primary caregiver for my daughter, who was diagnosed a year ago yesterday with stage IV signet ring cell colon cancer with peritoneal mets extensive, and she was not eligible for surgery, but after a successful FOLFOX 12 infusions, she now is eligible, and we’re waiting to have surgery on the 24th

Manju George 3:22
Okay.Thank you, Lissandra, you’re next.

Lissandra Maceda 3:27
My name is Lisandra Maceda. I was diagnosed in 2023 with stage 3B. I was 34 at the time. I am MSS, stable, and I have the KRAS, G12D mutation. In 2024 they found the peri mets on scans, and I had cytoreductive surgery with HIPEC and Lars that year, being NED since and I had to travel for my surgery out of state. .

Manju George 3:53
Okay, thank you. Karen, you’re next.

Karen 3:57
I’m Karen. I’m the caregiver to my husband, Warren. He was diagnosed at age 45 in 2019 with stage IV right sided colon cancer. He’s MSS, stable, KRAS, G13D. He developed peri mets in 2021, underwent two CRS with no HIPEC. And then in 2023 we traveled to New Haven to get CRS/HIPEC and he’s had a few recurrences, but we’ve been treating it with abdominal radiation. We live in Puerto Rico, so we travel for everything except the standard of care, chemo. He was off chemo for like, a year and a half, and now he’s back on chemo for liver mets.

Manju George 4:41
Okay, thank you. Kelly, you’re next.

Kelly 4:46
Hi, I’m Kelly. I live in Pittsburgh, Pennsylvania, and I was diagnosed in May of 2025, with a right sided cecum cancer, and the scans showed about five mets in my right lobe of the liver. I began with FOLFIRINOX plus Bevacizumab until September. We then we stopped, and I went in for surgery in October, where once the surgeon was in there for a right lobe resection, found three perimets in my abdomen. He resected them, took out my gallbladder, resected one of the liver mets. But then he said, protocol is close me up and get me back on chemo as soon as possible. So I restarted FOLFIRINOX in November, and I’ve had a dose reduction on the oxaliplatin. I’m now at 60% and I just restarted the Bevacizumab. The plan is to keep me on this regimen. All the scans have been good. My ct DNA is going down, but the doctor oncologist wants to see a durable, I forget what that’s called, did he wants to make sure to do another scan at the end of March, and assuming everything is still shrinking or disappearing, then send everything over to the surgical team and decide what’s to be done, because right now I still have the primary tumor, some right sided things that can’t be resected. The whole lobe has to be out and assume some peri mets are still in there.

Manju George 6:36
Thank you, Jessica, you’re next

Jessica 6:40
Hi. My name is Jessica. I was diagnosed in February of 21 I was stage 3c when I was first diagnosed. I had hemicolectomy, and then did adjuvant chemo with FOLFOX. Was thought to be in remission. And then in 2022 I developed extensive perimets and lung mets, and I was very sick that year. I was not a candidate for HIPEC. At that time, my disease was too extensive. I consulted with surgeons, but it just wasn’t the right time to do the surgery. So I went on to FOLFOXIRI with Avastin, and that helped keep things stable. In 2023 I switched to my current treatment, which is the beacon doublet. I have the BRAF mutation, and so I went on to the beacon doublet with nivolumab. Even though I am MSS, and I’m still on that it’s three years later, it’s worked wonderfully for me. I was able to have the surgery, HIPEC with CRS in August of 23 after my lung mets disappeared and my peritoneal meds decreased significantly, and since HIPEC I haven’t had any sign of cancer, but I’ve still been on treatment.

Manju George 7:57
Okay, thank you for sharing. Hi Dr. Kopecky, thank you so much for joining. So sorry you missed the intros. But could you tell us about yourself, and then, if you can share your screen, and then we can start the presentation.

Dr. Kopecky 8:11
Yeah, yeah. No trouble. Sorry for I was listening for a while, but I had trouble for the first, like two or three minutes, logging on. I’m Dr.Kopecky, I’m an assistant professor. I currently work at the University of Alabama at Birmingham. I’m a surgical oncologist. I do almost exclusively CRS and HIPEC. I took over the HIPEC program here in 2024, so I’ve been in my job for about two years, and I did my surgical oncology fellowship at Johns Hopkins in Baltimore. I’m going to get us started with just an overview of CRS/HIPEC who is eligible. What is it? What is it that we do? Just as like a little bit of information, background, the last two or three slides, or maybe three, is a little bit of my research, which is around patient expectations, around high risk abdominal surgery for malignancy, of which one of the surgeries that I study is this surgery that I do. So I’m so excited to be invited, and so excited to be here, and so I’ll just get started, so we don’t waste any time.

Dr. Kopecky 9:21
So I know we often talk aboutHIPEC, but really the whole acronym is CRS/HIPEC. And the CRS part stands for Cyto Reductive Surgery. And cytoreductive surgery is basically removing all visible or palpable evidence of tumor from the abdominal cavity. And the HIPEC part is the Hyperthermic Intraperitoneal Chemotherapy, and that is putting heated chemotherapy directly into the abdomen. So the reasons, or the diagnoses for which we do HIPEC are what we call peritoneal surface malignancies, which are in general, split between primary peritoneal surface malignancies, where the cancer itself is coming from the peritoneal lining of the abdomen, these are less common. Examples are desmoplastic, small cell, round tumors and peritoneal mesothelioma. More commonly, we do surgery for secondary peritoneal surface malignancies, which are things like appendiceal tumors, colorectal cancer, of course, gastric cancer and ovarian cancer. So the secondary peritoneal malignancies are more common.

Dr. Kopecky 10:23
Why do we do CRS/HIPEC?, and this is probably the busiest slide that I have in my slide deck, and I’m going to present more data up front and more pictures on the back end. But we did a randomized trial, or somebody not me,did a ra ndomized trial that was published in 2003 which is a randomized control trial between, let’s see, can you see my arrow? Not sure. Can you see my arrow? Okay, great. The methods of this study was that it was a randomized controlled trial between getting chemotherapy plus non curative intent, cytoreduction. So they went in and they took out this stuff that might have been bothering people or the biggest bits of tumor in the abdomen. But the plan when they went in wasn’t to completely clear the abdomen of disease, compared to getting CRS HIPEC with curative intent, to try to clear all evidence of disease with Mitomycin C for 90 minutes, followed by some post operative chemotherapy. The patients, rather that were in ARM one that got just the chemotherapy plus the kind-of-take-something-out-but-not-everything, their median survival was low, and the median survival of the people that got surgery with CRS/HIPEC, with a plan to try to clear as much disease as possible, lived longer. And I’ll get into just a little bit of the data of this study in the next slides. These are the survival curves. For those that were in the group where extensive as possible surgical resection, plus the heated chemotherapy versus the standard at that time, and you can see a survival benefit. This is a breakdown of the people that were in this group that got the studied surgery, which was the cytoreductive surgery, and the HIPEC. And you can see that there’s a real survival benefit here of people that have no residual tumor versus residual tumor that was left inside the abdominal cavity that was less than 2.5 millimeters, versus people that ended up even though they tried the best they could, they were still unable to completely clear all the disease. If the surgeons left more than 2.5 millimeters of disease in greatest span, you can see that the survival really drops off. This is from the same original RCT study, you can see that the number of regions in the abdomen that were affected by tumor also play a part in survival. Probably it is also correlated with the ability to completely clear the abdomen of disease. So the less disease that you have, the less disease in the fewer number of regions, the better survival you have, which is almost certainly correlated back to this slide, with the ability to get the abdomen completely cleared with no visible evidence of residual tumor. Here you can see that patients that had disease in more sections of the abdomen, or more, regions of the abdomen, had a decreased overall survival, but in in total, when they did their subgroup analysis, this study showed that they felt like the patients that had surgery with HIPEC had better overall survival.

Dr. Kopecky 13:36
This is an eight year follow up paper, and this is my last big data slide. But basically at eight years in this 78 months goes down to like this is like 6.7 years out, the patients that had the bigger surgery with HIPEC had better overall survival over the long term. And again, if you take this top line and you break it out to the how much tumor was left behind, that’s what these R numbers stand for. R1 is like the least amount of tumor left behind. R2A is the middle, and R2B is the most tumor left behind. You can see that these survival curves do really split, and the thing that matters most is maybe not only just getting the most extensive surgery in the HIPEC, but completely clearing as much disease as possible. So we talk a lot about HIPEC and the chemotherapy, because the HIPEC is just the chemotherapy part of the CRS/HIPEC procedure, but really it’s the cytoreduction that drives the benefit. It is impossible to tell from the study that I just presented. Was it that the surgery was better or that the chemotherapy is actually giving the overall survival benefit, but I think that even amongst groups that debate the added benefit of the heated chemotherapy. I think the thing that we really do know is that the cytoreduction drives the benefit, and the more complete the cyto reduction, the more anticipated benefit.

Dr. Kopecky 15:12
Okay, so I have a disclosure here, which is that I’m going to be sharing some images from the operating room. There are images that are from my operating room that are included in this presentation. There shouldn’t be anything that’s too graphic, but probably the most graphic picture is going to come up in three slides, although it’s not that great. I mean, it’s graphic. Okay? It’s included. This is a description or a graphic of how we calculate the PCI score. So the PCI score is the way as surgeons that we talk about the extent of disease in the abdomen. So in the study that I just referenced, where they’re talking about the number of regions involved in the abdomen, this is kind of now the up to date way that we talk about that as surgeons, and we can compare patient to patient, how much disease that there is to be cleared. So as you can see in this graphic, the main portion of the abdomen is divided into these nine quadrants that are calculated with zero in the middle, 1 2 3 4 5 6 7 8, and then the small intestine basically starts just a little bit past, this is the stomach, past the end of the stomach, and it goes all the way to the colon. And the small intestine is quite long, and we divide it into four regions, the first 25%, the second 25%, the third 25% and the last 25% and that also gets a number. So in total, there’s 13 areas, if you start at zero, even though the last number here is 12. And each of these quadrants in the abdomen, up here and along the small bowel here get a number, and that number is one, two or three, and the number that you get in each quadrant is dictated by the amount of tumor that we find in each quadrant. So the best case scenario is that you would have a PCI score of zero, no tumor seen. The worst case scenario is that you would have a PCI of 39 because that would mean that in each of these 13 quadrants, you had a PCI score of three, three times 13 is 39. Different surgeons use different kind of cut off scores for who and who they do and don’t consider surgery for and that is reflective of who we do, and don’t think that will benefit from surgery.

Dr. Kopecky 17:47
So I’m going to show you a couple of pictures next from my own diagnostic laparoscopies, and I almost always start with a diagnostic laparoscopy to assess the extent of disease. Almost every patient, or I’ll say, 100% of patients that are being considered for the surgery have had CT scans. We know that up to 30% of time, even a high quality CT scan misses tumors that are less than a centimeter, and so the diagnostic laparoscopy is really the gold standard to calculate this score, to help us decide whether or not we think surgery would be of benefit, and then also to help plan the surgery and set expectations regarding like the extent of the surgery and what patients can anticipate after. So this is an example. I will note that this card on the left does not match these pictures. But these are pictures from diagnostic laparoscopies from my own patients, where we make a small incision and put a camera in a five millimeter incision and take a look around. And usually what I do is I take a card like this, and I draw out the same type of diagram that I showed you, and I’m looking with the camera in each quadrant of the belly, and I make a guess, my best guess, about the extent of disease. So this is a patient that had colorectal cancer. This is me looking in the right upper quadrant above the liver, and I’m calculating in my mind the extent of disease here. This card is not this patient. It’s just for explanatory purposes. But, I look at this and if I’m calculating the PCI score in this area, this would be a three. This is a separate patient, so separate look of the tumor, separate disease biology. This is probably the right lower or the right mid quadrant here. And I would also probably call this a two or three. It would depend on in the moment, if I thought this was greater than five centimeters, or less than five centimeters. I’ll share just a few additional examples. These are kind of spots. This is also above the liver. These are spots on the peritoneum. And this is actually, this is colorectal cancer up here, and this is gastric cancer. The cancer usually looks white. It’s usually pretty easy to see on diagnostic laparoscopy, but you can see how it’s usually pretty thin and flat, and it is very hard, if not often, impossible, for a CT scan to pick up this level of disease. This is another patient who had normal radiographic imaging. Again, this is disease that is unresectable, and this is disease that’s I’m not showing you a picture of the abdominal wall here. I’m showing you a picture of the small bowel. And you can see, well, I guess this is the abdominal wall down here. This is the abdominal wall down here, but this is small bowel up top, and you can see that the outside of the intestines are coated in this thin layer of tumor that the CT scan didn’t pick up on.

Dr. Kopecky 21:11
I wanted to just because I think this is, like a really common question where people are curious, but like, what is the peritoneum? So the peritoneum is just a really thin layer that covers the abdominal wall and the retroperitoneal structures, which are the the organs that sit towards the spine in the back. It’s denoted here in these graphics with a red line. I’m going to go back just for a second. In this graphic, the the red are blood vessels in the abdominal wall, and the peritoneum is this really thin, like cellophane type coating that lines the abdomen. So here, this is the abdominal wall and the the implants are on the lining of the peritoneum, and the peritoneum is like thinner than cellophane. Here is kind of what the peritoneum looks like. This is my only intraoperative photo that is not mine. I pulled this from a paper. But you can see that like we strip…So here’s like a graphic. We take the peritoneum, and the goal is to kind of collect, for lack of a better word, all of the tumor nodules that are on the inside of the peritoneal lining. If you flipped this over and you looked at the back side of it, you would see that it’s flat and clear. And the the idea is that all of the cancer deposits that are on that lining kind of come out in one big sheet. This is a pain to actually do Okay, so once we’ve done the diagnostic laparoscopy, and we think that it makes sense to move forward with surgery, we move forward with surgery.

Dr. Kopecky 28:24
And here is us doing surgery. Oftentimes we are collecting many samples. So these, each of these photos is from one different case, each with specimens that we take out in the operating room, and as soon as the abdomen is cleared of disease, this is how I do it. We run the HIPEC and the HIPEC is, if you’ll remember, is the part with the heated chemotherapy, and we take the incision that has been open to clear all of the disease, and we put in these two catheters. And I’ll show you a picture of the outside of the catheters in just one second. But this is the inflow catheter up top here, and it goes kind of it splits in a y towards the pelvis, and this is the outflow catheter, and underneath the skin, it goes above the liver to help pull all of the fluid out. So these are like several different patients, where we just secure that, we close the skin temporarily in the middle of the operating room. I do do minimally invasive HIPEC for low volume disease. So this is a case that I did robotically, and because the patient doesn’t have a big, open midline abdominal incision, the perfusion catheters go in the robotic port sites. And then this, for whatever it’s worth, the patient had an ostomy. And so in order for the chemotherapy not to leak out, we had to close off the ostomy site. And then once the perfusion catheters are in place–so this is a picture of the perfusion catheters. This is the outflow cannula that goes above the liver. And this is the inflow cannula that splits into a y that goes, usually in the pelvis. This is the pump machine that runs the chemotherapy and keeps it heated to the goal temperature. And then, this is my perfusionist, and this is my first assist in the operating room. When I do this surgery and and this is not fixed everywhere, I usually do resection, so I clear the abdomen of disease. I do the perfusion, kind of like I’ve described here. And then once the perfusion is done, I do the reconstruction.

Dr. Kopecky 28:24
So reconstruction basically means, if I had to remove a segment of bowel or intestine, and the plan was to put that back together, then I would do that after the chemotherapy runs. Some surgeons do the resection and then the reconstruction. So take everything out, put everything back together, and then run the chemotherapy. But that’s a surgeon preference decision. If we think back a little bit just to who gets surgery and why they there are many additional prognostic indicators. However, I would say that PCI is really one of the big drivers, at least for me and my surgical decision making about whether or not I think the patient is likely to benefit from surgical intervention. But other factors include age, gender, tumor markers, tumor grade, lymph nodes, perineural and lymphovascular invasion, some of the additional genetic studies like KRAS, BRAF and things like that, and then the extent of disease and the extent of necessary, anticipated surgical resection. I was also asked to make a small comment about consideration of removing ovaries for Peri and post menopausal women. This also is certainly applicable to women that are fertile or are interested in preserving fertility, but this is a conversation that I have with every woman. For most peri and post menopausal women, I do recommend removing the ovaries at least, and that comes from one study, which I will tell you about, where these researchers did a retrospective review of all female patients that had had CRS, HIPEC for non GYN cancers, and they looked at the number of patients that had normal appearing ovaries intraoperatively. Did they have cancer in them, even when they took them out? Anyways, this is an extremely low volume study. I’m about to show you how low volume. They took 20 patients and they asked, did they identify disease on the ovaries during surgery? The answer for half of those women was no, but you’ll see that the final pathology showed cancer cells in the ovaries in 50% of these people. This is a study of 20 patients, but I do have to admit that this does guide my discussions, particularly with women that are absolutely done with childbearing. And my own clinical experience that oftentimes colorectal cancer does seem to like to recur in the ovaries. And so if I am doing this surgery, I almost always counsel towards removing the ovaries, and I think it’s more of a nuanced discussion for women that are interested in preserving their fertility. Just as a follow up, this is a survey study that was done, asking surgeons about their practice of removing normal appearing ovaries. And you can see that the surgeon specific practice differs based on women’s menopausal status, pre menopausal versus post menopausal, with surgeons being less likely to remove ovaries for women that are pre menopausal as compared to post menopausal. But I think that this is definitely worth a conversation.

Dr. Kopecky 29:00
This next slide is really important, and I am so excited that I was invited to give this talk and share this work with you, or this, you know, have this discussion with you all. One of the things that I find really commonly happens for patients that have been actively information seeking online is that they’ll show up to my clinic and they will tell me all the things that they’ve read about HIPEC, and one of the things that I like to remind my own patients is that HIPEC, like somebody else’s HIPEC, is not your HIPEC, and HIPEC is thrown out as a type of surgery. But it really, really, really means so many different things. And you can imagine that if you had a PCI score of four, meaning like particularly low volume peritoneal disease versus a PCI score of 20, which would be more extensive peritoneal disease, the amount of work that is required, the amount of surgical work that is required to clear that abdomen of disease, is completely different for these two patients, not to mention, like all of the other factors about who they are, what their medical comorbidities are, what their functional status is, what their disease like disease, tumor markers, tumor biology is are different. Even just the PCI alone really drives the surgical experience. And so I can take somebody to the operating room that has a PCI of two and give them HIPEC and do HIPEC surgery. I can also take somebody to the operating room who has a PCI of 20, and those surgeries are called the exact same thing. They’re both called HIPEC, but those are two completely different surgeries, and in part, that makes preparing for the surgery difficult. It is another reason why I always like to do a diagnostic laparoscopy before moving forward with the main surgery, because knowing what the PCI score is helps me counsel the patient about what I expect would need to be involved in terms of surgery, surgical resection and surgical recovery. But that’s one of my soap boxes here, so I thought I’d just use this platform to share my soapbox, which is that, like everybody’s surgery is different, but HIPEC in particular, because so much variability is possible.

Dr. Kopecky 31:23
I mentioned that I do some of my own research on what patients might expect after surgery and what they don’t know to expect. I did some of this work because as a surgical resident and a surgical oncology fellow, I really saw over and over again how people in the post operative setting, didn’t really have a good understanding of what to expect at all from surgery. So I’m going to give you, like a one slide overview of what I generally tell patients, and then I’ll check in to see if I have time. But I have, like, two sides or three of my own data. So this camera graphic is to remind myself, to remind you, that really, when I’m counseling patients about patient specific factors, about what to expect, that discussion is really guided by my diagnostic laparoscopy. And this is a camera because it means we take a look inside. It’s the picture of what it looks like inside the abdomen that dictates the anticipated PCI, the anticipated work of surgery. In general, I counsel my patients about spending at least one night in the ICU. 50% of time people are able to get out of the ICU on the first post operative day, and about 50% of the time people need more than one day in the ICU. That’s my practice. I personally put everybody in the ICU on the first night. I talk to my patients about the almost certain likelihood that they’ll wake up with a nasogastric tube in their nose. It’s a picture of a nasogastric tube. That they’ll wake up with at least one, if not two, surgical drains in the abdomen. We talk a little bit about ileus, which is the experience of the intestines not waking up quite quickly after surgery, we talk about the need for intraoperative blood draws. Our job as the medical team to monitor patients while they’re in the hospital, to make sure that they haven’t developed or developing an infection. And then I also counsel patients about the fact that it’s my job to keep a really close eye on things and to realize, identify and handle scenarios when unexpected things happen after surgery, it is certainly possible this is a big surgery and and all of the you know, specific patient expectations certainly depend on the case and the extent of surgery, but it is almost always the case that it is possible that unexpected things can happen. And it’s our job as the surgical team, and it’s my job as the surgeon to be vigilant about unexpected things happening, particularly while patients are in their early post operative course in hospital, at home, just I’m just trying not to waste too much time here, but at home, I always counsel patients that poor appetite is extremely normal. Most people’s appetite is in the trash. Some people really go home with even persistent nausea, and then, like a dense fatigue, I have patients that tell me, like I walked to the mailbox and back and I had to take a nap, so being really tired, not really having any desire to eat, are the things that I find to be the two most common.

Manju George 34:32
Thank you so much. That was very informative, and that sets the stage for the next our discussions.

Dr. Godfrey 34:39
Yeah. So I’m going to talk a little bit about, sort of in the vein of what Dr Kopecky was talking about at the end, about, what expectations do we have about surgery? But also, how does that interact with the way we decide as parts of the medical team how to help. Patients navigate that decision, and how do they navigate the decision on their end? I did a pretty big survey that actually some COLONTOWN Peri mets neighborhood folks were kind enough to contribute to on this sort of exact question, what are the experiences that you had about finding somebody who could talk to you about cytoreductive surgery, finding your way through the process of deciding whether to have it or not, and then how you feel about that decision on the other side of it, and not necessarily the question of how do you feel like your clinical outcomes were? But do you feel like you made the best decision you could and that you felt gratified with that process? Because there’s a lot of data that shows that how you feel about the decision making really matters to your quality of life and feelings and experience after and it may actually be associated with having better outcomes because of that mind body access that we really don’t understand well in modern medicine, but we definitely know is there.

Dr. Godfrey 36:11
So this, the study itself, is called DECISIVE, my partner in crime, Nicole, who’s kind of taken over for me as I go back to full time clinical practice this year, unfortunately, couldn’t be here tonight. She is abroad, but I did want to put her name on the slide so you all see it. Disclosures I mentioned before, I am a surgery resident, so unlike Dr Kopecky, I have not completed my training. I don’t practice as a primary, responsible surgeon. I always have surgeons who are faculty who are guiding my practice and continuing to train me. This work itself was supported by the Institute for Clinical Excellence the Buxbaum foundation at the University of Chicago. I don’t have any pictures, but I do have illustrations. Some of those are a little graphic, but none of them are very gory, because they’re all artistic renderings. Acknowledgements, all of you guys, all of the patient organizations that have graciously spent a lot of time helping me do this research. They’ve helped other people do this research as well. But I do want to emphasize as I go through all of the study and the results that I had that this was a really unique study, and that having peri mets and getting surgery for it and being around to talk about it is rare, and it’s hard to get a lot of those people in one room or in one clinic to talk about their experiences, and so often it’s really hard to answer some of the important questions about, how do we better take care of people in that position? Because funding, whether it’s from a private fund or a nonprofit or the government, all means you have to give it. Give them the receipts, give them the audit trail, show them. This is why it’s important. These are the numbers. And so folks like the peri mets neighborhood, who showed up to a webinar with me at the beginning of last year, and then and listened and did the survey. And the PMP pals who set up a whole webinar, and then had, like, probably, I don’t know, 70-80 people do the survey like that. Kind of contribution is so great, and I’m so thankful for that, but it also really helps the people who are in the community that they’re supporting to because that’s where we get the data that helps us help the community.

Dr. Godfrey 38:39
Decisional conflict is is a term that we’re increasingly using when we talk about surgery. It just means having negative feelings about the decision experience like I don’t feel like I had all the right information. I don’t feel like I was well supported. I felt like I didn’t know these important things. And it doesn’t always mean feeling like you made the wrong decision. It just means feeling like things did not go as well as it could have. Patients who have peritoneal tumors face even more barriers than the general population when it comes to big surgery, because of all that fatigue, the symptoms of cancer treatment, which I don’t have to tell you guys about, but all of those things and and especially the poor public visibility and the fact that a lot of doctors don’t know what to do with it, and they say, well, you’re stage four, so there’s nothing we can do for you. Those kinds of factors make it really hard to have a good conversation, and it makes it makes, often, the patients and their caregivers have to carry a lot of the burdens themselves. So we were thinking through what is a way to address that problem? Well, in a lot of cancer surgery, there’s and complex surgery as a whole, there are things called decision aids, and these are the gold standard for improving decision satisfaction and reducing that conflict, reducing regret. Yeah. A decision aid is something that sort of takes into account the fact that often you’re not getting the right kind of information or enough of it. Sometimes your doctors, your care team members, your family, your support system, are not really communicating with you about what’s important. They may be making assumptions. They may just be scared to talk about it, because the whole thing is so scary and it’s a big deal, and there’s also all of these mental and emotional and physical symptoms that actually do affect cognition, and we have evidence that it really does make it harder to retain information and process it. So decision aids try to take those things into account and help make the process better, especially those areas. So decision aids are supposed to make the choice you’re making very clear. So just like Dr Kopecky was doing, describing the process in detail, making it clear what parts actually matter for what parts of recovery, things like that are really important, presenting data that matters, like, what patients actually say they care about? Like, do they care about how long they’re in the hospital? Do they care about how far they have to drive? Do they care about how long recovery takes? Like, if those things matter, we should be communicating them and then decision aids put those two things together and say, This is the choice you’re making and how it applies to the things that matter to you. And we found they really work. They decrease conflict, they increase satisfaction, and they help people feel like their decisions better match their values. And all of that has been associated overall with better satisfaction with the outcomes of your treatment as well.

Dr. Godfrey 41:42
So we did a pretty extensive survey, 117 items, which is really amazing to have as much engagement and response as we did, because that’s a pretty hefty, hefty ask to say, Hey, sit and fill out this 117 item survey and but patient advocacy organizations, including you guys, and also some other heavy hitters and PMP were really gracious about distributing it and encouraging people to participate. So we had caregivers who answered, and we had people who themselves had gone through the process for their peritoneal tumors. We had 113 people with cancer answer, 12 caregivers of people who had passed away, and 21 caregivers of people who were still around. Most of less a little less than half were low grade appendix tumors. But we had some high grade tumors, we had some ovarian tumors, we had some colorectal tumors, most of these were people who did end up having CRS. There’s very small percent who didn’t end up having it. And then about 46% were people who didn’t know they had cancer at all before it was all diagnosed, all at one time. And most people with cancer said they didn’t regret their decision. Only 11% said that it wasn’t worth it, but a moderate amount of caregivers felt like that was the case, and that’s partly because a lot of caregivers coming to this experience, talking about what it was like having lost that person, even though they managed to have CRS. So that skews the numbers a little but I do think it’s worth reflecting on, especially as medical team members, that you need to include everybody who’s part of of the decision when you’re talking about these big decisions about surgery. We asked people what barriers there were to making a decision. And I think what’s one really important thing to think about as as providers, is that people reported emotional symptoms of a diagnosis and of cancer and of treatment actually were the number one reported barrier, which is often something we aren’t thinking about as much like we’re trying to be thoughtful about how sensitive we are when we discuss things, but we don’t always connect the dots, so that’s an important piece of information to carry forward into these conversations. And then we asked people, what parts of the process did you feel like you were lacking, what information didn’t you have? And I think it’s really important, the 26% of people said they weren’t adequately informed about risks and side effects, and I think that speaks to what Dr Kopecky focuses on with her slide with the icons of the conversations that need to happen. A lot of people didn’t feel like they knew about NG tubes and drains and those unexpected circumstances that can happen, and when you don’t know what to expect. Those can be really traumatic, and add to the experience, which I know many of you have experienced firsthand and know but putting a number on it really helps prod people in medicine to be better when we’re communicating. And prognosis was also a big area for improvement. And doctors are bad at talking about prognosis. I think we’re scared to put a number on it, because we’re always hoping that it’ll be better than we guess, and we don’t want to sound like we’re telling you there isn’t anything to hope for, but it’s really important to people to know what to expect. So that’s an area that we can also be better at. People who took the survey also gave us some really clear ideas of what exactly they needed to know in the category of what I wish I would have known. So those perioperative complications, those unexpected experiences, that was the most important thing people mentioned that was a surprise, or, would have maybe made them think about their decision differently. The next most common thing people talked about was, what about returning to normal life? What are the expectations for that? What is the timeline?

Dr. Godfrey 41:42
So what we are going to do is that here are all the questions that I have put together for all the panelists, but then what we’ll do is that we’ll go in an order, so I’ll go to the next one, and the question is for Melanie, and you can see a like a little bit about her specific situation here. And the question is, to her, is now that your daughter is just about to have CRS/HIPEC, where did you learn most about CRS/HIPEC, and what role did COLONTOWN play in the process?

Dr. Godfrey 43:18
Okay, I really think I hadn’t even heard of it until I started reading through when we were on when COLONTOWN was on Facebook, I was a part of the Jelly Bellies group, and I started hearing about HIPEC, because it was not offered to us through the oncologist or even the initial surgeon that did her colostomy. So I really heard about it from COLONTOWN. And then what I would do is I would hear a doc, a surgeon’s name, and then, like the top three or four surgeons names that constantly came up, and then I would go and research them and look for videos they had done and that sort of thing. But I used COLONTOWN as the base place that I got me in from, rather than Google and stuff like that.

Manju George 45:36
Okay, thank you so much, and I appreciate the concise answer so we can go to the next person. And this question for you, Kelly. Tell us briefly about the experience of finding peri mets during the liver resection surgery. And what advice do you have for people who unexpectedly find that their surgery plans have been changed?

Melanie Sapp 46:24
Yeah. So as you can imagine, I went in with potentially curative surgery and came out hearing that I had one of the worst places for to have metastatic cancer, and I read as much as I could in the hospital so I could talk to the liver surgeon about it before I left the hospital. And I don’t know how to prepare anybody for that experience, except that this my surgeon. I think he’s terrific. He was very positive. And a second surgeon came by as well and said, Don’t lose hope. Said he had searched and searched and didn’t find anything beyond two nodules on the diaphragm and one retroperitoneal, one between the liver and the kidneys. And he said he was very hopeful that we could still do something and maybe get back to surgery. And so his talking about it now, he was not high on HIPEC at all. And the more I read about complications when you try to do a liver resection, plus CRS/HIPEC So that made me a little scared, and but it’s just a waiting game right now. I’m going to wait and see what my options actually are, what the surgeons recommend. Yeah, I would say, Don’t give up hope. You come out of a surgery with an unexpected outcome, it’s the same. It’s a roller coaster all the time. You just look on the bright side, and hopefully have some doctors who are positive like mine are.

Manju George 49:34
Okay, thank you so much, and that’s a great message for everyone. I’m going to look at the next question, and this is for you, Eric, please talk to us about the peri met that the radiologist realized was growing for some time. And what advice do you have about the challenges of detecting the peritoneal disease and its impact on the disease trajectory, based on your experience?

Erik Groothuis 50:00
Was diagnosed originally because I had the first symptom, was a small bowel obstruction that I noticed after having no symptoms at all. The CT and MRI scans showed a potential spread to the peritoneum, but when I had a robotic hemicolectomy, the surgeon didn’t see any evidence of peritoneal disease at that time, back in 2023 so I was very happy. I felt like, you know, this cloud that had been hanging over me of the potential for peritoneal disease all of a sudden parted. After adjuvant and neoadjuvant chemotherapy around the surgery, I went right into this clinical trial. During the clinical trial, I was getting scanned quite regularly, every eight weeks, and I think that ultimately worked against me, ironically, because I sort of analogize it to watching your child grow. You know, a relative that doesn’t see your kid for three years, will see big change, but if you see your kid every day, you don’t notice. And so there was a mucinous tumor at the base of my peritoneum that was growing. But because they were mostly just comparing one scan to the one immediately prior, nothing got picked up until a radiologist thought to compare it to the very first scan, and that, combined with rising CEA, led to a diagnostic lap that confirmed the disease. There were mixed signals for me, right? Because the CT DNA tests that were being done were always nothing detected after my hemicolectomy, although CEA was rising, but that was dismissed as a potential side effect of the chemotherapy. So I think what happened in my case was the CT DNA was not escaping the peritoneum, but somehow the antigens that are part of CEA did escape. The doctors on this call could understand that better than me, but I think that clouded the diagnosis, and after the diagnosis was confirmed, I did undergo the CRS /HIPEC last summer.

Manju George 52:16
Okay, okay, thank you so much. And Karen the next the question for you is, tell us about managing peritoneal disease and its impact on disease control for your husband.

Karen 52:33
For us, it’s been seven years. He was diagnosed at 45. He had some symptoms, and we went to University of Miami, and they did, like an emergency laparoscopic surgery, because of a CT that was without contrast, so they didn’t see that he actually had a liver metastasis at the beginning. So after that, when we found that out, we decided to go to MSK, which really has been the best decision I’ve ever made. And at MSK, I created a really nice group of surgeons, oncologist, radiation, everything there. It wasn’t until 2021, after two years that he had peri mets, his peri mets have always been single, like they call it oligometastatic, sort of. And I was under care at MSK, and Dr Nash had been doing the EPIC versus HIPEC, a whole research, and he was definitely not recommending it. It’s really hard to go against somebody that you trust so much. So after two CRS with him, with recurrences right afterwards, and there were very small recurrences, that he completely de bulked, I spoke to him and to Cercek, and I’m like, I want your blessing, but I need to do something else, because this isn’t working. So with their blessing, and they actually recommended Turaga, I went to Turaga. We had CRS/HIPEC. And a few months, maybe a year later, or eight months later, we had a recurrence in an area that Turaga hadn’t been able to completely take out. He had shaved off, and he told me, you should get radiation on it preventive. MSK didn’t want to, but it came out. So we had radiation there. And a year later we had radiation again. Looking back, if I had to do it all over again, with all the experiences that I’ve been listening to. I feel that maybe if the first surgery would have been CRS, HIPEC, it would have been better, and I still wouldn’t be dealing.. his abdominal mets are stable and slowly dying. Now he has liver issues. But I did learn that CT scans are not reliable. You have to push for PET scans, and most centers don’t want to do it. We get PET scans every three months. Sometimes they don’t show up. So you have to push. You have to be an advocate. You have to start paying attention to symptoms, not just what’s going on with the labs, subtle discomforts, changes in appetite, bowel shifts. You learn to listen and see him and and then I also learned that stability matters, that you know, you learn to live with it. Somebody told me, just learn to live it as a chronic disease, like if you have diabetes. And that kind of changed my perspective a little bit. We travel every three months to MSK. We’re very blessed that we have a huge amount of doctors that are caring and compassionate and very aggressive. They always have a solution. My husband has had seven surgeries, maybe five or six ablations, two rounds of radiation. So at the end of the matter, finding surgeons who truly specialize in this pattern of disease.. you don’t feel comfortable with one, go to another. Go to a big Cancer Center. Your systemic therapy, thoughtfully. He’s only on chemo here and there to maintain his health. Whack a mole, play the game of ablations, and anything you can do that’s not chemo. And then you have to advocate for when something doesn’t feel right. And you have to push and push and push until you get that appointment, and until you get to talk to that person, that doctor, that you need. And you have to stay ahead of the symptoms and it’s like a constant reassessment of what’s going on and keep them healthy, in order to be able to receive whatever comes next. And so I’m always ahead, and I have 10 trials lined up just in case, and keep everything organized on the cloud, staying ahead and talking to people and I went to ASCO to meet doctors. And anything you can do to stay ahead is what I would recommend to do. And I’ve learned a lot of that through COLONTOWN, has been a backbone of how my husband is still alive after seven years.

Karen 52:33
Okay, thank you so much. Laurie, the next question is for you? Tell us about your experiences of navigating CRS. HIPEC as someone with BRAF mutated colorectal cancer.

Laurie 54:30
Well, so far, I don’t feel like having the BRAF mutation has really been a consideration for whether or not I was eligible for the surgery. I was scheduled to have surgery January 19, but because of the pause in in chemotherapy, the my mets grew and they said I wasn’t eligible for the surgery anymore, but I don’t feel like the BRAF mutation was ever a consideration in that. I have spoken with doctors at the Peritoneal Cancer Institute in Barcelona, Spain, and they feel like I am eligible. I just talked to them yesterday, and feel like they can do the surgery. So we’re kind of looking into that now. And regarding the BRAF, it hasn’t come up with them, but it doesn’t seem to be a roadblock to the surgery.

Karen 56:01
Okay, okay. Thank you for sharing. And then Lissandra, how did you end up having a CRS, HIPEC, even when your oncologist did not recommend it? How did that? How was that process for you?

Karen 55:15
It was very challenging, because I was originally stage three, which is very straightforward with the guidelines. When you go to a stage four with peri mets, it’s really hard to find information, and that’s where COLONTOWN was great. I found COLONTOWN, learn about the experiences of everybody like Karen, which is great. I did my own research online. And it looked like that was my best, the best bet. And then I learned from COLONTOWN again, the doctors that I needed to check and I went ahead and got my surgery. I’m really happy with the results. I don’t think I would be no evidence of disease and without treatment for almost a year without the surgery. So I think that the best take is always check with surgery. Like the oncologist, they handle chemo. They have a different role. This is a team effort. Only the surgeon should be able to tell you if you are a candidate or if you are not, and even multiple surgeons, just keep searching until you find something that feels right to you. You know, it’s hard with insurance and travel expenses, but it’s really worth it to try that.

Manju George 57:34
Okay, wow, thank you so much. The next question is, for Jessica, please tell us about getting a CRS HIPEC as a patient with the BRAF mutated colorectal cancer. And what advice do you have for others?

Laurie 57:56
For me, I was not told that I had the BRAF mutation when I was first diagnosed, I was stage 3C and eventually told that I was in remission, and I was just unaware that I had it. My oncologist did not share that information with me, and I found out after I got the peritoneal mets and they were pretty advanced, and I also had the lung metastases at that time. So then when I found out I had the BRAF mutation, and I started reading about it, I was absolutely despondent. I was so scared that that was the end, because I was feeling very sick. I had ascites, I had a lot of pain, and I was told that the surgeon could help me by doing CRS/HIPEC. And I went to consult, and he was very honest with me, and said that I was just too advanced and I wasn’t a candidate. And I thought he was telling me that there was just no chance, and I wasn’t going to make it, that I would never be a candidate. But he said, start chemotherapy and come back and see me in six months. And I did, and I had, I had a good response to chemotherapy, and then, as I said in the beginning, I eventually switched to the beacon doublet with nivolumab, which worked wonders for me. And that same surgeon was able to take me to surgery a year later, 13 months later, and I trusted, I mean, I still trust him. He’s a fantastic surgeon. I really appreciated his honesty. In hindsight, I realized he was being very honest with me, but at the time it was really hard to hear. But now, I know I can totally count on him. And what he said to me right before we went to surgery was that he just had no idea how my cancer was going to respond to treatment when he first met me, but after a year of monitoring me, he can tell me that my cancer was very responsive to treatment, and everyone is different, and that there’s a lot of hope for me to live for a very long time, and by that time, I could finally have that hope and believe. And now it’s almost three years later. So it was a long road. It was very scary, but I feel very differently about BRAF now than I did. Okay. Okay, my advice would be to make sure that you go to a surgeon that you can trust, because I consulted with a different surgeon who was very disrespectful and somebody that I just would not have felt comfortable with. I’m in Phoenix, Arizona at the time, there were only two surgeons in the state to choose from. So if I hadn’t found my surgeon, I would have been traveling out of state to find someone else that I could trust,

Manju George 58:19
okay, amazing, thank you so much for sharing. So now the next question is about post CRS/ HIPEC, and about the experience of recovery. So these are, this question is for people, anyone who has had CRS/HIPEC, maybe I start with you, Erik, how did your recovery go?.

Laurie 58:19
So that part was definitely the most difficult part of my cancer journey, and it’s not even close. I mean, my hemicolectomy, within a couple weeks I was back on the treadmill, certainly not running full speed, but like no problem. With the CRS/HIPEC, it took a good six weeks before I really felt myself. The anecdote somebody shared before about walking to the mailbox.. Like I would go to the gym and I’d try to walk very slowly for half an hour, and then I’d spend the rest of the afternoon on the couch because I just couldn’t, didn’t have the strength to pick myself back up, and oftentimes I’d be napping in the morning and napping again in the afternoon. So that was a challenge. And in the hospital, I had an ileus, which was quite difficult for me, nausea and vomiting, and ultimately an NG tube had to be put in, which I do not recommend for anyone. So those were challenges, for sure, but here I am, I guess I’m about seven months out. And not everything is the same as it was before. But physically I’m feeling as good as I have in a while. I’m probably somewhere between 90 and 100% but that first month or two was extremely difficult. Just no energy, and I need, just a very small meal, and I’d have a lot of stomach discomfort, as I guess my body adjusted to the new architecture, because I had a lower anterior resection as part of that surgery as well. So this was, this was a big, a big challenge, I would say, the recovery.

Manju George 59:28
Okay, okay. Thank you so much for sharing, and I’m happy that you’re almost back to yourself. Karen, do you have anything to add about Warren’s experiences?

Karen 1:01:23
My husband has had many surgeries, and he’s really done pretty well. I think that the CRS HIPEC was almost the same as his other CRS. He was walking the next day. He didn’t have a feeding tube or be in the ICU. I think that everybody just has different experiences, and he recovers well. I mean, I think it was five days in the hospital then, like, four or five days is the suites and then we flew home two weeks later. So it can be done.

Manju George 1:00:22
Okay, thank you, nice..Lissandra, how was it for you?

Lissandra Maceda 1:00:31
My recovery was actually better than I was expecting, like I had minor issues, but really nothing serious. I think it really helped me that I have a nutritionist on board. So after I went home, she really helped me find ways to get those calories in, because, as Erik was saying, it’s really hard, you don’t have an appetite, and also trying to be active, even if it’s not, maybe not going to the gym one hour. But even if it’s just walking to the mailbox, as you know, as much as you can do, I think those things were key.

Manju George 1:07:08
Okay, thank you. What about you, Jessica? What do you want to add?

Jessica 1:07:14
The recovery was harder than I thought it was going to be, even though they told me that it was going to be difficult. But I am a person who tends to recover well from other surgeries. This was a completely different situation. The fatigue was daunting. Eating wasn’t normal for three months. I had two hospitalizations. One was for ileus a week post op, I didn’t need an NG tube, thank goodness, but I needed enemas and I needed to be on fluids and not eat for a while in the hospital. And then I even had a bowel obstruction two months post operatively, which was so shocking. My surgeon thinks it was just from an adhesion, and I think it was going on for weeks as a partial bowel obstruction. And then it finally got to the point where I went into the hospital that also resolved without an NG tube, but I had to be hospitalized for a few days. After about three months, things were much better, but it definitely took probably five or six months to feel normal.

Manju George 1:08:16
Okay, okay, so I’m going to stop the sharing, and then I want to ask the surgeons.. Do you have any comments from what you have heard, or any advice?

Dr. Kopecky 1:08:30
I can go I think that, yeah, it was so great to have everybody’s perspective. I think it’s very common to have experiences that are different than what you thought it was going to be in part, because, especially if HIPEC is the first surgery, if they knew, if you had synchronous peritoneal mets and HIPEC was this first surgery, you have nothing to compare it to. I think there’s advantages and disadvantages of both, right? You’ve at least had some surgery. So you know what the experience of general surgery is like. That’s kind of helpful. It’s hard. Like what Erik said, if you think that the HIPEC is maybe going to be similar to right colon, which can be pretty different, but it is probably more than 90% of patients have experiences that are different than what they expected, and I know that Dr Godfrey didn’t get a chance to get to all the way to the end of her slides, but it is extremely common to not have expectations mostly, because even as surgeons, we don’t have a crystal ball, and I can’t tell you with 100% certainty, day by day by day, by how it’s going to go. And as a surgeon researcher who studies expectations, I beat myself up sometimes when things happen that I totally did not anticipate for particular patients and didn’t prepare them for. That’s something that I take pretty personally, and I’m trying to give my own self a little bit of benefit of the doubt for my own self, that I’m also just doing the best that I can to help patients be prepared.

Dr. Godfrey 1:10:16
And I was just gonna piggyback off what Dr Kopecky just said, which is the uniqueness of everyone’s experiences. And I’ve now been to a few of these webinars where I’m getting to hear people tell their stories, as well as DECISIVE being all about hearing people’s stories. And I think it’s just so.. every single time, it strikes me how unique these experiences are, and how important it is for the people who are listening to you all share your stories, and how important it is to bring the stories to people who are making the decision for the first time themselves. And I think the sort of spirit of of DECISIVE has now become, how do I bring in in a distilled way, access to the value of your stories and your experiences, to people who haven’t met you yet. And one of the aspects of and I’ll show you a few sneak peeks of what things are starting to look like we were just starting to build, what our tool is going to be, but, just letting people know that there’s groups like this and and making sure that they have access to that, that they can come back to day by day. And, they can see the science, they can see the information. That’s all great, but the important thing is access to people who can help guide them.

Manju George 1:11:36
While she’s figuring it out, I want everyone to think of what is one message you want for someone with peritoneal mets, who is considering CRS/HIPEC? What do you want them to know based on your experiences? So keep that thought in your mind. And then after Dr Godfrey finishes with her slides, we can go around the room and listen to what you have to say.

Dr. Godfrey 1:12:05
So quick hits. You don’t need to hear me go through all of this. I want to get to what you think is most important to share, because that certainly will be more important than my slides. But just that those of you who contributed really helped us see where the holes are. Really gave us great data that we can take to people who fund this stuff to to get more support, get more money, pull together tools to support you guys. And our medical educator that we work with, who’s really extremely talented has been working with us as we start to build out a tool. And this is just some sample images from sort of the educational and definitions and glossary part of the tool that shows, okay, why does intraperitoneal chemo matter? Why doesn’t IV chemo work? What is the peritoneum? And just like Dr Kopecky was talking about, I feel like there’s information that can be found. But sometimes it’s hard to get good information, good clear pictures. So we’ve been working on that, and then she’s helping us walk through how to represent those what I wish I would have known, topics like complications, prognosis, things like that. So we’re working through this, and we’re going to test it at Yale and see how our patients like it, what they think we could do better, and then hopefully from Yale to the world. So that’s the hope, and it’s all because of folks like you guys who are doing such a great job sharing your experiences with others.

Manju George 1:13:42
Yeah, thank you so much. So I hope you are all ready with what advice do you have for people considering CRS/HIPEC and I’m going to ask based on how you are on my screen. So Lissandra, what advice do you have for someone with peritoneal mets considering CRS/HIPEC?

Lissandra Maceda 1:14:08
I think that the rehab is really important, like getting ready for that surgery. And by that it means, like getting the nutrition you need if you need to get some weight, make sure you gain it before the surgery, be active, get as fit as you can, like, working out, go to the gym, get your body ready for that big surgery. I think that really helps with recovery.

Manju George 1:14:31
Okay, thank you so much, Jessica. You are next on my screen.

Speaker 1 1:14:36
Yeah, I just want to second that that’s so important is that making sure that you’re in good shape going into it. And then just again, what I said before, making sure that you have a surgeon that you really trust is so important. And then just also understanding how invasive it is and how long of a recovery it’s expected to be

Manju George 1:14:58
Okay. Thank you, Karen, you are next.

Karen 1:15:02
I would say that before you make the decision of going for a CRS/HIPEC, I would have to tell you to understand your PCI, understand whether the complete cyto reduction is possible. That is number one. If they can’t get all of it out, I mean, you might as well not do it. Make sure that you’re in a center that is high volume, not here and there, high volume, specialized surgeon and staff and facilities and recovery with nutrition, the details matter. Not all CRS HIPEC programs are the same, all the centers the same. And don’t be afraid to interview more than one surgeon. We interviewed four, and we went with who we liked the most. Don’t be afraid to travel. I mean, different perspectives help you understand what you’re in for, and you feel confident when you find the right surgeon.

Manju George 1:16:04
Okay, thank you. Yeah. Melanie, what advice do you have for someone you know in your daughter’s situation?

Melanie Sapp 1:16:13
Well, I think one of the surprises to me was that you don’t just decide to have it and then you have the surgery. That there’s so many steps involved, so many questions, so many things that need to be figured out. Do they need to take your ovaries? Do they need to take your uterus? What else could happen? Your omentum, all kinds of things. So lots of scans, lots of appointments, lots of different specialists are going to weigh in. So it’s more like a team to decide that, and I wasn’t really aware of that, but it’s a big deal. Lots of things have to be in place first.

Manju George 1:16:50
Yeah, okay, thank you.Erik, what do you have to add?

Erik Groothuis 1:16:54
So without repeating anything that’s been said already, I agree with essentially all of that. I would tell people not to do a lot of internet searching. The things that you will read and the statistics that you will see are, frankly, pretty dismal. And it’s important to understand not only what Dr Kopecky mentioned before that, a PCI of five is different from a PCI of 25 but there’s differences in people’s baseline health going into these surgeries, their resources, their attitudes. There’s so many things that make the statistics that you read about, most of which are probably five to 10 years out of date anyway, not necessarily applicable to you, but it’s hard not to do that, frankly, because you get a limited amount of time with doctors, and you have probably close to an unlimited time, a lot of time with the Internet. So it’s sort of a natural response to try to go out and educate yourself on what’s going on. But if you don’t take what you’re reading with a grain of salt, it’s likely to do more harm than good. So that’s maybe just something that occurred to me, realizing that medicine, I always thought of it before I entered this journey as much more of a science than an art, and I appreciate now how much of an art it is. I mean, there’s to this day of running debate about whether it’s worth doing HIPEC at all, right. There’s a study out of France that shows that the outcomes are no better. And then there’s response that, well, they used oxaliplatin instead of Mitomycin, and they only did it for 30 minutes instead of 90 minutes, and all those things. Maybe I’m getting the details wrong, but the gist of it is these are all people who are working in good faith, and they have differences of opinion, right? So, as somebody said, maybe Karen, you do have to find somebody you trust, but I would encourage people to talk to multiple providers, because you will hear different perspectives for sure.

Manju George 1:18:57
Okay, thank you so much. I saw a lot of vigorous nodding from both of our surgeons to many of the things you said. Kelly, your last on my screen.

Kelly 1:19:08
Okay, yeah, I’d say this is above all. This is a definite area. I haven’t had the surgery yet. I don’t know if I’ll even be eligible. I don’t know what my surgeons or doctors have in store. But beyond having a team you really trust, I’d say it’s very important also, because this is just a time of a lot of unknowns. You just don’t know what’s going on in there. You know that the CT scan was great, but you don’t know if it actually is picking up what’s in there. And it’s just, it’s reflective of the whole journey with having this cancer stage four is just there are a lot of unknowns, and you have to just be in a good, good spot, mentally and emotionally, finding the support you need to to just handle that well. And I think I’ve been doing pretty well with that. Yes, and controlling what you can, your fitness levels and what you eat, your weight and things like that. So it’s, it’s not much, but that’s all I can say at this point for me.

Manju George 1:20:15
Okay, thank you so much. That is quite valuable. Now to the surgeons. What do you have, do you have final thoughts?

Dr. Kopecky 1:20:22
I can go first. I second what everybody said, I think that it’s super important to find a surgeon that you trust. I think it’s super important to remember that your experience is going to be different than anybody else’s experience. I would also say that once you find a surgeon that you trust, if that surgeon thinks that surgery isn’t the right answer for you, the reason that they’re making that decision is because they think that surgery would hurt you instead of help you. And so I know on a lot of these forums, we talk the goal is surgery. The goal is surgery. Get to surgery. And I’m a surgeon like I believe in surgery. I believe in the cytoreduction more than the HIPEC part, probably, but I’m still a HIPEC surgeon. That being said, if a surgeon is not recommending surgery and you trust that surgeon, I would say that it’s okay to trust that surgeon. And I know that like doesn’t really quite sound right, but a surgeon that you trust, that’s a thoughtful surgeon won’t recommend surgery appropriately if they think that surgery will not offer benefit. And yes, you can go find a second and a third and a fourth opinion, and you could probably find somebody that would do surgery anyways, but that doesn’t mean that it was the right decision for you. So I would trust your gut and anchoring on knowing or to the best that you can, that you do trust that person, their experience and their expertise, and that, though sometimes surgery isn’t the answer, it still might be the right answer for you. And so that’s just like after a big old surgery talk, just to say that, like, surgery isn’t the right decision for everyone, and I myself recommend not surgery to some people who I don’t think will benefit from surgery. So that’s my final thoughts.

Manju George 1:22:15
Dr Godfrey?

Dr. Godfrey 1:22:20
Yeah, yeah.I think there’s not much room to add anything to all the great thoughts that have already been shared. But I did want to call attention to what was mentioned earlier about this idea that cancer is a chronic disease, and the better we get at treating it, the more true that is, and I have a little bit of a personal crusade about the language we use, about surgery, calling it a battle, and things like that. If that vibes with you, that’s great. Find the language that makes you feel powerful and you’re engaged, and all of that. But I had some good friends through a community context. When I was in college, I went to college and Med School in Houston, so there were a lot of people who had traveled to MD Anderson for care from all over the world. And one of these was an older couple who I went to church with. So we do these Sunday lunches, and I spent a lot of time with them. And they both had cancer. He had a sarcoma that had recurred several times, and she had a pretty aggressive breast cancer, and so both of them had been on a lot of experimental therapies, and as especially at that age, I was amazed that they spent so much of their time getting therapy, but also living life. And they were like, no, no, yeah, we call cancer, but stage four, whatever, like, terminal or whatever. And thankfully, we’re getting away from that kind of language. They’re like, but it’s really about living with cancer. And that is why I decided I wanted to study surgical oncology and go into that for my career, because I think it’s so, I think it’s unfair to put it on you guys that you’re inspiring and all of that because you’re just trying. You’re just living your life like you have to do the best with the hand that you’re dealt. But it is inspiring. It’s a worthwhile thing to be doing, and you guys are not just doing that, but you’re using that to help other people. So I just want to highlight that, and thank you all, and thank you for letting me be part of this too.

Manju George 1:24:31
Yeah, wow, thank you so much. And I also want to thank everyone for their generosity to share their experiences with everyone, and it’s not the people who are watching us now, this will be on COLONTOWN University, and I’m sure that it’ll be of value to so many people who listen to it. And before we close, I want to really thank Kim Sully. She is one of the admins in the peri mets group, and she was really instrumental in connecting you all to me. And I really, really appreciate you sharing your stories with me. And for those who haven’t had CRS, HIPEC yet, and are thinking of getting it, and are on treatments to get there. Good luck to you. And Melanie, your daughter has surgery next week. Good luck. And to everyone thank you for spending this time with us. And even though we had some technical difficulties, and we started a little late, I think that we were able to cover most of the things that we thought we wanted to cover. So I really appreciate everyone’s time and take care and bye. Good night.