Pod Insights Short Wave The mystery that led this family to get their stomachs removed About this episode When Karyn Paringatai learned about a pattern among her family members, it changed the course of her life: A lot of people died young. As Karyn dug into her family history, she learned many Maori families, like her own, suffered from a rare form of stomach cancer called diffuse gastric cancer. Sarah Zhang https://www.theatlantic.com/author/sarah-zhang/ recently wrote a story https://www.theatlantic.com/health/2026/03/stomach-cancer-total-gastrectomy/686623/?gift=e8DbyF2sDmzhn965n7rLL7i5OyzgM0iPSAMNssaj6Ws&utm_source=copy-link&utm_medium=social&utm_campaign=share on this kind of cancer as a staff writer at The Atlantic. Today, she gets into all the details with Short Wave host Emily Kwong: the mutation that causes it and the life-changing decision people with the mutation have to make – risk dying or get surgery to remove their entire stomach?
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Transcript Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.
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0:18 Emily Kwong? You're listening to Short Wave from NPR.
0:24 Emily Kwong? When Karen Perengatai's father died, she did what a lot of people do. She reconnected with his side of the family. And a pattern she learned on that side of the family changed the course of her life. She noticed that a lot of people on his side had died young. Not just her cousin, but her cousin's sister, her cousin's mother, and her cousin's grandmother. All gone.
0:47 Speaker 02 So the family started to realize there must be something wrong.
0:51 Emily Kwong? Sarah Zhang is a staff writer at The Atlantic. She recently wrote a story on Maori families like Karen's, where long lines of people have died from a rare form of stomach cancer called diffuse gastric cancer. It causes cancerous cells to percolate undetected in the stomach lining, only becoming obvious in advanced stages. But by then, it's usually too late to treat. That's what happened to Karen's cousin.
1:17 Speaker 02 And so after this, Karen hears from her auntie who tells her, you know, you need to get tested because there's this mutation that's running through our family that gives you a really high risk of stomach cancer.
1:27 Emily Kwong? Now, if she tested positive for this mutation, Karen would have a 70% chance of developing this form of cancer.
1:34 Speaker 02 She does get tested, and she finds out she is positive for the mutation.
1:39 Emily Kwong? But then, doctors tell Karen about one unexpected, lifesaving option. She can get surgery to get her entire stomach removed.
1:48 Speaker 02 Her reaction is just like, what do you mean? Like, can you live without a stomach? How would she eat? How would you replace it?
1:54 Emily Kwong? And Sarah says both options come with risks. A 70% chance of deadly cancer, or surgery with a 100% chance of significant side effects. Today on the show, life without a stomach. How Maori families have advanced scientific understanding of a rare form of stomach cancer and are beating the odds of survival. I'm Emily Kwong, and you're listening to Short Wave, the science podcast from NPR.
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4:02 Emily Kwong? Back in the 90s, doctors found a rare form of cancer in Maori families. And they traced it to a mutation in the CDH1 gene. Now, this gene encodes a protein that normally orients and aligns cells in the stomach. But without it, Sarah Zhang writes, the cells become, quote, "lopsided, rogue, and possibly cancerous." Any parent with a mutation in the gene has a 50% chance of passing it on to their children. The reason doctors even know about the gene at all is because of one Maori woman, May Bell McLeod. So Sarah, let's pick up with her story. What did May Bell do when she realized her family had a history of stomach cancer?
4:42 Speaker 02 Yeah, so the way she talked about it is that nobody talked about it. They believed it was a curse. So you sort of, you know, if you thought if you talked about it, you might be the next one to fall to the curse. There's actually an article from the 1960s that talks about this particular family, which is in fact the McLeod's, where I think a 21-year-old came in with this type of diffuse gastric cancer. This family has lived with this history of stomach cancer for a really long time. May Bell herself is a nurse, and she goes to a genetics conference, and she realizes, you know what, this is not a curse, this is genetic. And she decides to contact a scientist, a geneticist, to figure out exactly what the gene in her family is.
5:25 Emily Kwong? It's like a science sleuthing story. She's like, there is an answer to this, and I think it could help us, so I'm going to go get those answers for myself. So what does the McLeod family ultimately do and find?
5:38 Speaker 02 Yeah, so they agree to be studied by a scientist named Perry Guilford. And what's, I think it's really unusual and interesting is that the family goes to the scientists, right? It isn't the other way around. And they were very clear that they, you know, they were the ones who were going to go around and collect the samples. They didn't want Perry knocking on doors or calling on people.
6:01 Emily Kwong? This family wanted answers for themselves, yeah?
6:03 Speaker 02 Yeah. So they ended up collecting, I think, about 100 samples for the family. Living relatives. They actually also got archival samples from relatives who had died from stomach cancer years ago. And the other part is that not only they had to collect the physical samples, is that they were also building their family tree back generations. Because not only do you need the genetic analysis, but you'd have the family tree to know how something, how a mutation runs through the family.
6:29 Emily Kwong? Wow. So because of May Bell's work, they discover this connection between stomach cancer and this particular gene, CDH1. May Bell didn't have it, but Karen Perringatay, who we met at the top of the episode, did. She now faces an agonizing decision to remove her stomach or not. She did decide to go through with the procedure in 2010. What is that procedure like, to get your stomach removed?
6:58 Speaker 02 It is a long surgery. It's a complicated surgery.
7:02 Emily Kwong? Yeah.
7:02 Speaker 02 The very simple way of explaining it is that basically they cut your abdomen open and they take out your stomach and then reconnect your intestine to your esophagus. But of course, there's still scarring on the inside and it takes a while to recover. So the first few days after surgery, you can kind of really only eat soft foods and you have to eat a little bit a lot and you have to chew a lot, like chew, like chewing gum is how people have described it to me.
7:32 Emily Kwong? Whoa. You have to masticate.
7:34 Speaker 02 Exactly.
7:34 Emily Kwong? Because your stomach juices are not going to break that down for you.
7:37 Speaker 02 One person literally told me, like she had a timer on her phone and she would like, you know, take a bite, like chew, chew, chew, swallow, wait, and then like take another small bite, chew, chew, chew, swallow, wait, just so she wasn't eating too fast.
7:50 Emily Kwong? Besides the changes to eating, what other changes did Karen experience? Because your, what you eat is so connected to like your blood sugar and your energy levels and how was that for her?
8:03 Speaker 02 Yeah, a hundred percent. I think, you know, also what you eat is so connected to how you socialize, right?
8:08 Emily Kwong? Oh, true.
8:08 Speaker 02 Like she talks about how it was really hard to like go out to dinner with friends because she didn't know if she would, you know, suddenly like feel faint or sick in the middle of dinner or after dinner. And you lose a lot of weight. Something, sometimes people have had to change jobs because they can just no longer have the physical stamina. And so these are things that usually change over time. I think what I universally heard is that the first six months of the year can be really difficult. And then,
8:34 Emily Kwong? Right.
8:34 Speaker 02 you know, some people find you are pretty much back to normal and some people find that they still struggle with fatigue or nausea or vomiting.
8:42 Emily Kwong? Yeah. Reading the piece, I was just amazed at the changes happening on the inside as your body, like you write about how the upper part of the intestine adapts into a pseudo-stomach. So part of your body is like, ugh, I got it. I will be the stomach for us now. And
9:02 Emily Kwong? Eventually, people can eat larger portions. They don't have to eat as many meals and they are able to maybe put on some weight back. And you talk about how people still need regular shots of B12 because you need your stomach and stomach acid to release the B12 from food. But otherwise, are people able to live as if they have a stomach without one?
9:23 Speaker 02 Yeah, there are some people who've said to me, like, their friends are like, what? You don't have a stomach? I would have no idea. You're totally normal. You are a total foodie. Other people have said to me, like, oh, like, everything is normal, except it's really hard for me to drink water. We don't really know why. We think it maybe is like the surface tension of the water makes it really hard to go down the esophagus. On the other hand, there are people who say water is totally fine. I talked to someone else who was like drinking from a liter bottle of water on our Zoom call the entire time we were talking. So it's really very person to person.
9:54 Emily Kwong? Yeah. You also write how in a number of your conversations, people opened up about alcohol and alcoholism, that after their surgery, alcohol went down better and they found themselves drinking. How common was that?
10:08 Speaker 02 Yeah, it came up in, I would say, the majority of my conversations. So like after this kept happening, I was like, huh, I think this must be like a real pattern. And there is some scientific evidence suggests that there is something here, right? There is like an association between getting bariatric surgery to lose weight and then later having a higher risk of alcohol use disorder. So while we don't really know exactly what the cause is or what the causation is, a number of people who get part of their stomach removed end up having a higher chance of developing alcohol use disorder. You know, probably the way alcohol moves through your stomach is different. And of course, there's also just like the psychological component, right? Like, you know, on one hand, you're dealing with the fear of cancer and then you're dealing
10:51 Speaker 02 with like a huge change in your daily life. One man I talked to, James, you know, he talked about how it was really quite hard right after the surgery because he found it really difficult to, you know, provide for his daughter. He couldn't pick her up, you know, drive. So that might be part of it as well.
11:11 Emily Kwong? You know, it's interesting how medicine has come so far, right? That we can test for mutations that are likely to lead to cancer. We can reduce people's risk for cancer in this big way. But it also puts a really tough choice on people's shoulders, which is to have a part of their body removed. And reading your piece, you know, it sounded like even doctors who were performing these preventative surgeries had mixed feelings because there is a 100% chance that their patients are gonna have some kind of side effects or complications. So what do you make of where we're at with medicine right now? That these are the choices people face?
11:46 Speaker 02 Yeah, you're exactly right. Like, it's incredible how much progress we've made, but how far we still have to go, you know? Perry Gofford, the geneticist who discovered the mutation, he said, you know, I think in the future, we'll think these surgeries are draconian. We can't believe, I can't believe we were doing such draconian surgeries on people, taking their whole stomachs out. And I think, you know, everyone would love to have a better treatment option. This is a really invasive surgery. It is really life-changing.
12:13 Emily Kwong? Yeah.
12:14 Speaker 02 I think another piece of this, there have, I talked to a couple of surgeons who said that it was their experience talking to patients that made them sort of consider, hey, have we like really thought about all of the physical and psychological side effects of getting your stomach out? As a surgeon, you can often look at outcomes like how much weight was regained after two years? And then I think there's sort of like the more qualitative part of like, what is your quality of life after two years? Which is harder to capture in a number, on a chart, on a paper. So I think the difference now is that if you do not have a family history, I think surgeons are much more comfortable saying like, let's wait, let's do the endoscopies and see what actually happens.
12:56 Emily Kwong? Mm-hmm, mm-hmm. As for Karen, how's she feeling about getting her stomach out?
13:00 Speaker 02 You know, I think she feels like it saved her life. Another piece of this is that, you know, we started talking, when I talked to Karen, she sort of told me a lot about her father's family and sort of what her father did. And she, because of this, sort of ironically, because of this mutation, she became so much closer to her father's family. And so now she has a relationship with them, her kids have a relationship with them. And she herself- As a Maori studies professor, so one of her research projects was in fact trying to understand how a mutation affects a family like hers.
13:37 Emily Kwong? That's so cool.
13:39 Speaker 02 Yeah, through this, she like really reconnected with her family. And she told me that she was visiting her family recently. And she was with her partner and the rest of her family, there were eight of them. And she kind of turned to her partner and said, you're the odd one out. He's like, well, yeah, I'm not, you know, a member, like a blood relative of your family. She was like, no, you're the only one out of the eight of us with a stomach.
14:02 Emily Kwong? Wow.
14:05 Emily Kwong? Sarah Zane for The Atlantic. Thank you so much for talking to me about this family and the contributions of the Maori people to like cancer research and and what it's like to live without a stomach. Super interesting.
14:20 Speaker 02 Yeah, thank you. It was great talking to you.
14:23 Emily Kwong? If you like this episode, please follow us and share it with a friend. We're trying to grow our audience. And we know you have someone in your life who would like a little sciency palate cleanser during their commute, an interesting story they can share at the dinner table, or just a fun fact about the world around us. This episode was produced by Rachel Carlson and edited by our showrunner Rebecca Ramirez. Tyler Jones is our fact checker extraordinaire. Kwasi Lee was the audio engineer. I'm Emily Kwong. Thank you for listening to Short Wave from NPR. See you next time.
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