WEBVTT - Should We Be Scared of Our DNA?

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<v Speaker 1>Genetic testing in medicine has been a huge force for good.

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<v Speaker 1>But what happens when your test results come back with

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<v Speaker 1>bizarre findings and your doctor advises you to take immediate

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<v Speaker 1>radical steps. They said, we really need to see you

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<v Speaker 1>in and they came and said you have to have

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<v Speaker 1>your stomach remy and I went what they said, Yes,

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<v Speaker 1>you need to immediately, you know, And it kind of

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<v Speaker 1>just sounded like nonsense of me. Honestly, I blew it

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<v Speaker 1>off and I was like, Okay, well, you know, I'm

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<v Speaker 1>not paying attention to that. Diane Dillon got the shock

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<v Speaker 1>of her life when she found out she had a

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<v Speaker 1>rare genetic mutation that doctors told her can cause stomach cancer,

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<v Speaker 1>a terrible, hard to detect form of the disease that

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<v Speaker 1>can quickly turn fatal. Her son might had it too.

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<v Speaker 1>No one in the family had ever heard of the

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<v Speaker 1>disease or the gene when they found out they were carriers.

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<v Speaker 1>In the fall of that's not surprising. It's extremely rare.

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<v Speaker 1>There are only a few hundred families with the mutation

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<v Speaker 1>who have been studied by researchers. But the doctors were

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<v Speaker 1>telling both Mike and Diane they needed to have their

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<v Speaker 1>stomachs removed urgently. Welcome to Prognosis, Bloomberg's podcast about the

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<v Speaker 1>intersection of health and technology and the unexpected places it's

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<v Speaker 1>taking us. I'm a healthcare reporter, but this story didn't

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<v Speaker 1>come from the usual sources. I learned about it through

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<v Speaker 1>my own family grape Vine. Mike is married to my

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<v Speaker 1>first cousin, Kim. My dad heard from his brother, that's

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<v Speaker 1>my uncle, that Mike was going to have his stomach

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<v Speaker 1>removed because of a gene he had inherited. When I

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<v Speaker 1>heard that from my dad, I thought, that's just weird.

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<v Speaker 1>Mike's in his thirties. He's entirely healthy. He and Kim

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<v Speaker 1>are both fit and active. They have two adorable kids,

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<v Speaker 1>a boy and a girl. This to me did not

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<v Speaker 1>sound right, So my and I started emailing and researching,

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<v Speaker 1>and it turned out this was legit, but it was

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<v Speaker 1>also at the cutting edge of medicine, and that's a

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<v Speaker 1>really scary place to be. I went to visit them

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<v Speaker 1>in South Florida in March. I was coming from Minnesota,

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<v Speaker 1>where there was two ft of snow on the ground.

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<v Speaker 1>Suddenly it was seventy degrees and sunny. I was meeting

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<v Speaker 1>Mike's mom Diane for the first time. Hey, it's so

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<v Speaker 1>good to see you too. Brought down this cold weather.

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<v Speaker 1>This cold weather, how I'm Michelle. Nice to meet you.

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<v Speaker 1>It is beautiful here. What are we talking about the

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<v Speaker 1>cold weather? Yea, we love to get piss Believe me,

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<v Speaker 1>this is this is the last raw. It didn't take

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<v Speaker 1>long for the seriousness of the genetic findings to hit home.

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<v Speaker 1>Diane had been tested to see if the breast cancer

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<v Speaker 1>she survived fifteen years earlier had a genetic cause. It did,

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<v Speaker 1>but it wasn't the one that she expected it and

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<v Speaker 1>it wasn't only linked to breast cancer. Mike had also

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<v Speaker 1>gotten tested. He was driving when he got the news

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<v Speaker 1>that he had it too. He talked with Kim, his wife,

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<v Speaker 1>then he called his parents. So I was pretty traumatic

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<v Speaker 1>for them, For me, for everybody I think I compared,

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<v Speaker 1>it was like a bomb was shopped on our family.

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<v Speaker 1>You know. Everything that I had read to that point

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<v Speaker 1>was that you pretty much immediately have to have this

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<v Speaker 1>surgery done, and I was pretty much preparing myself for that.

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<v Speaker 1>It's important to understand why there's such an extreme reaction

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<v Speaker 1>to this mutation. It's in a gene called c d

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<v Speaker 1>H one, the genes responsible for making a protein that

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<v Speaker 1>helps cells stick together. If you have this mutation, cancer

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<v Speaker 1>cells don't clump into a tumor that doctors can find. Instead,

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<v Speaker 1>they form little independent clusters of cancer. I saw a

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<v Speaker 1>picture that reminded me of the lingering seeds that you

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<v Speaker 1>find in a supposedly seedless watermelon. There can be dozens

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<v Speaker 1>of them, all in the stomach. It's called hereditary diffuse

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<v Speaker 1>gastric cancer. So now you have microscopic cells that can

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<v Speaker 1>shoot off into your system and start lodging in different

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<v Speaker 1>organs in the body, your lung, your liver, the parenteal lining,

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<v Speaker 1>which is the lining around your abdominal cavity, and at

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<v Speaker 1>that stage it's what we call stage four or metastatic

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<v Speaker 1>stomach cancer. That was Vivian Strong, a surgeon a Memorial

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<v Speaker 1>Sloane Cattering Cancer Center and an expert in stomach cancer.

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<v Speaker 1>When Mike learned he had the mutation in he was

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<v Speaker 1>told the lifetime risk of developing stomach cancer can be

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<v Speaker 1>as high as seventy or eight That's why surgery is

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<v Speaker 1>often considered a no brainer eliminate the risk. But those

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<v Speaker 1>numbers may be misleading. They're based on people with the

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<v Speaker 1>family history of stomach cancer. But the field is constantly

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<v Speaker 1>evolving and improving. Now researchers are finding the mutation more often,

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<v Speaker 1>and they suspect the risk of getting cancer for those

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<v Speaker 1>without a family history may not be anywhere near but

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<v Speaker 1>still high enough to warrant concern. That's the Dylan's conundrum.

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<v Speaker 1>What should Mike and Diane do. Sophia Stadler, a medical

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<v Speaker 1>oncologist and genetic counselor at Sloan Cattering, knows the uncertainty well.

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<v Speaker 1>And so those are the numbers that we have, but

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<v Speaker 1>those are based on families who have a history of

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<v Speaker 1>hereditary hereditary the fuse gast cancer. So what about those

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<v Speaker 1>without a family history. We just don't have enough data

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<v Speaker 1>to know what those are. They may very very well

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<v Speaker 1>be lower. But how low is that risk? Is the

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<v Speaker 1>risk solow that it does not warrants struck to me?

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<v Speaker 1>The Dylan family was completely unprepared to learn they had

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<v Speaker 1>this mutation. No one had mentioned c d H one.

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<v Speaker 1>It's called an incidental finding when doctors are looking for

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<v Speaker 1>one thing but come up with something else. Mike's mom, Diane,

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<v Speaker 1>had a family history of breast cancer, so she got

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<v Speaker 1>tested for a Braca mutation. That's the gene that Angelina

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<v Speaker 1>Jolie has, the one that led her to get a

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<v Speaker 1>double messed ectomy. But Diane's doctors didn't just look for

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<v Speaker 1>the Braca gene. We found out they only they checked

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<v Speaker 1>for other things, one being this I guess that came

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<v Speaker 1>back and did you know when they were doing the tests? No,

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<v Speaker 1>I had no idea. I thought they were just doing

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<v Speaker 1>the braca. These incidental findings are happening more and more

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<v Speaker 1>often as genetic testing gets easier and cheaper. Rather than

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<v Speaker 1>testing patients only for the conditions they're most likely to have,

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<v Speaker 1>their doctors are testing them for variants in a bunch

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<v Speaker 1>of genes, and patients sometimes get unexpected results, like news

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<v Speaker 1>that they have a c d H one mutation. Dr

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<v Speaker 1>Stadler's watched the evolution of genetic testing in her practice

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<v Speaker 1>at Sloan. Cattering and multigene panel testing is cost efficient.

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<v Speaker 1>It's efficient for the patient because you everything all at once.

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<v Speaker 1>It's easy for the physician because you check the box.

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<v Speaker 1>It's a big panel and you get everything you need right.

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<v Speaker 1>A lot of the commercial laboratories have incorporated CBH one

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<v Speaker 1>into their generic breast cancer gene panel, even though many

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<v Speaker 1>of those breast cancer patients don't actually need criteria for

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<v Speaker 1>genetic testing for c DH one. That's how you find

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<v Speaker 1>a risk for stomach cancer when you were worried about

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<v Speaker 1>breast cancer. The Dylan family. They don't match a single

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<v Speaker 1>one of the six criteria that doctors used to consider

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<v Speaker 1>a genetic test for a c d H one mutation.

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<v Speaker 1>You know there is cancer in my family, breast cancer,

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<v Speaker 1>and you ever heard of stomach cancer in your family? Never? No, never.

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<v Speaker 1>For some people, finding the mutation isn't a shock, it's

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<v Speaker 1>a relief. It's an explanation for what's been devastating their

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<v Speaker 1>families for decades. While getting your stomach removed seems drastic,

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<v Speaker 1>it is feasible, and it's a way for these families

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<v Speaker 1>to ward off an early death, a tragedy some have

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<v Speaker 1>seen all too often. That's how it was for another

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<v Speaker 1>c d H one patient I talked to. Her name

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<v Speaker 1>is Hannah Davis. I met her through an advocacy group

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<v Speaker 1>called No Stomach for Cancer. Unlike my cousin's family, Hannah's

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<v Speaker 1>family does have a history of stomach cancer. It just

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<v Speaker 1>took them a while to figure out the genetic connection.

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<v Speaker 1>Hannah's great grandmother died decades ago of abdominal cancer. All

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<v Speaker 1>five of her daughters developed breast cancer, and only one

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<v Speaker 1>Hannah's grandmother survived. When Hannah's father started having stomach pain

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<v Speaker 1>and quickly lost weight, no one put it together. Months later,

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<v Speaker 1>he and a cousin were both battling stomach cancer and

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<v Speaker 1>they realized maybe this wasn't a coincidence. So they kind

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<v Speaker 1>of got to talking and they're like, well, this is

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<v Speaker 1>kind of weird. What are the odds that we both

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<v Speaker 1>have stomach cancer now? So that kind of opened the

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<v Speaker 1>door to all of this testing. It was a c

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<v Speaker 1>d H one mutation with high penetrants. That means there

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<v Speaker 1>were a lot of affected family members. My dad's brother

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<v Speaker 1>and sister both habit. Several of my dad's cousins tested

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<v Speaker 1>positive and um then myself and one of my two

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<v Speaker 1>brothers tested positive as well. Hannah's dad was in his

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<v Speaker 1>fifties when he was diagnosed with cancer. There wasn't much

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<v Speaker 1>doctors could do to help him, but there was one

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<v Speaker 1>thing that he wanted for his family is dying. Wish

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<v Speaker 1>really was for us kids to be tested. And he said,

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<v Speaker 1>you know, if you test positive. You need to go

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<v Speaker 1>through with the prophylactic total guest strict to me, because

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<v Speaker 1>that's that's really the only way to prevent stomach cancer

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<v Speaker 1>more people with this gene. Hannah got tested just after

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<v Speaker 1>her dad passed away. She was twenty years old when

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<v Speaker 1>she found out that she was a carrier, and she

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<v Speaker 1>wasn't ready to let a doctor remove her stomach, so

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<v Speaker 1>she waited, and she worried. I kind of just thought

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<v Speaker 1>of it as like this ticking time bomb and and

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<v Speaker 1>my body and I thought about it constantly, but I

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<v Speaker 1>just felt like it wasn't the right time, and so

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<v Speaker 1>I pursued my undergraduate degree, went to grad school and

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<v Speaker 1>actually had my surgery the week before my graduation and

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<v Speaker 1>walked to the stage of my graduation um a week

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<v Speaker 1>out of having a total gas direct to me, which

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<v Speaker 1>was very crazy. The doctors examined her stomach tissue and

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<v Speaker 1>found no signs of cancer. But she's still glad she

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<v Speaker 1>got the surgery. I have no regrets at all. I

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<v Speaker 1>certainly feel this sense of relief. I know it's what

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<v Speaker 1>my dad wanted for me. I know, just based off

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<v Speaker 1>of the research. Having a chance of developing stomach cancer

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<v Speaker 1>at some point in my life. And then, um, not

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<v Speaker 1>only that, but just having it be so hard to detect.

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<v Speaker 1>And I certainly rocked my world in so many diffront ways,

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<v Speaker 1>But I have no regrets whatsoever those kinds of dramatic

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<v Speaker 1>stories or what Mike found when he went online to

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<v Speaker 1>research the condition, but they didn't really seem to apply

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<v Speaker 1>to him and his family. They hired a company to

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<v Speaker 1>do a complete medical history of Diane's ancestry going back generations.

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<v Speaker 1>There was no smoking gun, no stomach cancer, no early

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<v Speaker 1>deaths from cancer, any kind of cancer. Then Mike's internet

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<v Speaker 1>searches found Perry Guilford, the researcher who discovered the c

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<v Speaker 1>d H one G mutations role in gastric cancer. It

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<v Speaker 1>was first found in an indigit in his tribe in

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<v Speaker 1>New Zealand. And I sent him an email, UM, not

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<v Speaker 1>really expecting response, and I think I got a response

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<v Speaker 1>within twenty four hours, and you know, I'd explain the

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<v Speaker 1>whole situation now we had no family history of it,

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<v Speaker 1>and he was broke back pretty lengthy response, but he

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<v Speaker 1>also agreed that you know, running out and having this

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<v Speaker 1>surgery immediately it was not something that that I needed

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<v Speaker 1>to be focused on at that point, there is another option.

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<v Speaker 1>It's a really close monitoring approach called endoscopy. A specialist

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<v Speaker 1>put a tube down your throat and takes dozens of

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<v Speaker 1>biopsy samples from the stomach a few times each year.

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<v Speaker 1>They're looking for the earliest signs of cancer, essentially the

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<v Speaker 1>seed in the seedless watermelon, but they do it blindly.

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<v Speaker 1>There are no visual cues when the cancer starts to

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<v Speaker 1>form and spread, so it's imperfect. Still, since learning she

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<v Speaker 1>had the c d H one mutation almost two years ago,

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<v Speaker 1>Diane has decided to forego stomach removal and instead have

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<v Speaker 1>endos cape's. While she's strong and lively and has no

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<v Speaker 1>trouble shepherding a gaggle of her grandchildren at any given time,

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<v Speaker 1>she's also tiny. People who have their stomach removed often

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<v Speaker 1>lose one fifth of their body weight. Diane doesn't have

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<v Speaker 1>an ounce to lose, and at age seventy two, maybe

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<v Speaker 1>she's past the cancer risk. I can't let it worry me. Yeah,

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<v Speaker 1>I gotta live my life. Um, if I got it,

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<v Speaker 1>then you know, if I would address it. But I

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<v Speaker 1>just feel right now, you know, I've made it this long,

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<v Speaker 1>and I think the doctors are saying, Okay, you know,

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<v Speaker 1>maybe you should because we really don't see it in

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<v Speaker 1>your family. For Mike, it's a bit of a different story.

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<v Speaker 1>Most of that risk is still ahead of him. So

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<v Speaker 1>the average age of diagnosis is thirty eight. How old

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<v Speaker 1>are you? So does that weigh on you? Yeah? Yeah, definitely.

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<v Speaker 1>I mean especially in the beginning when I first, you know,

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<v Speaker 1>it's started reading all this and seeing this. But then

0:14:02.160 --> 0:14:04.640
<v Speaker 1>I also could look at my mom. She's made it

0:14:04.679 --> 0:14:08.520
<v Speaker 1>this long and has had no you know, repercussions from

0:14:08.559 --> 0:14:13.120
<v Speaker 1>the gene as far as the stomach goes. So the

0:14:13.160 --> 0:14:16.960
<v Speaker 1>boom and genetic testing is profoundly changing the field. It

0:14:17.080 --> 0:14:19.920
<v Speaker 1>used to be that the doctors tested cancer patients to

0:14:19.960 --> 0:14:22.680
<v Speaker 1>see if they had a gene mutation. Now it's the

0:14:22.720 --> 0:14:26.120
<v Speaker 1>other way around. Doctors are trying to predict people with

0:14:26.160 --> 0:14:30.000
<v Speaker 1>a gene mutation will get cancer. It turns out the

0:14:30.120 --> 0:14:34.400
<v Speaker 1>risk isn't as high as they once expected. This is

0:14:34.480 --> 0:14:38.640
<v Speaker 1>Rashid Karen, director of the Ambre Translational Genomics Lab at

0:14:38.640 --> 0:14:42.560
<v Speaker 1>Ambrey Genetics and an expert in c d H one mutations.

0:14:43.760 --> 0:14:48.000
<v Speaker 1>The risk for the lobular breast cancer and for diffuse

0:14:48.080 --> 0:14:52.840
<v Speaker 1>gastric cancer it's definitely higher than in the general population,

0:14:53.280 --> 0:14:56.440
<v Speaker 1>but it's not as high as we thought initially in

0:14:56.520 --> 0:15:00.560
<v Speaker 1>the last decade. Previously, people would say that you have

0:15:00.760 --> 0:15:03.440
<v Speaker 1>eight risk of developing gastric cancer if you have a

0:15:03.440 --> 0:15:08.040
<v Speaker 1>pathogenic mutation in stage one, So that's a pretty high risk.

0:15:08.160 --> 0:15:12.200
<v Speaker 1>That would be a terrifying thing to read, right exactly. Yea,

0:15:13.200 --> 0:15:15.600
<v Speaker 1>so that's what we used to say. What is the

0:15:15.680 --> 0:15:19.280
<v Speaker 1>current understanding of what the risk is. So now we

0:15:19.400 --> 0:15:22.640
<v Speaker 1>believe the data shows us that the risk is more

0:15:22.720 --> 0:15:29.760
<v Speaker 1>around twenty for gastric cancer, and for women. The risk

0:15:29.800 --> 0:15:34.160
<v Speaker 1>of global best cancer is also around He was emphatic

0:15:34.320 --> 0:15:38.600
<v Speaker 1>that this lower percentage is still a really big problem.

0:15:38.640 --> 0:15:44.840
<v Speaker 1>For comparison, about ten of smokers develop lung cancer, so

0:15:44.880 --> 0:15:47.320
<v Speaker 1>this is even higher than that. I do want to

0:15:47.360 --> 0:15:51.000
<v Speaker 1>stress this diffused gastric cancer is a very deadly disease.

0:15:51.600 --> 0:15:58.200
<v Speaker 1>It's very hard to diagnose when it's too treatable. That's

0:15:58.240 --> 0:16:01.440
<v Speaker 1>the benefit of the surgery. Their chance of developing gas

0:16:01.600 --> 0:16:05.520
<v Speaker 1>cancer are are virtually none. The field is also evolving

0:16:05.520 --> 0:16:08.400
<v Speaker 1>in other ways. As scientists find more c d H

0:16:08.480 --> 0:16:12.360
<v Speaker 1>one mutations, they're also learning more about them. My name

0:16:12.400 --> 0:16:17.920
<v Speaker 1>is from I'm a physician, scientist and searching oncologies. Here

0:16:18.760 --> 0:16:22.760
<v Speaker 1>in the Rare Humor initiative of the National Cancer Institute,

0:16:23.000 --> 0:16:25.440
<v Speaker 1>someone like Dr rute Law can do a deep dive

0:16:25.560 --> 0:16:28.760
<v Speaker 1>on the specific gene variant itself, the one that's inside

0:16:28.800 --> 0:16:32.040
<v Speaker 1>of you or in this case, the one that's inside

0:16:32.040 --> 0:16:35.120
<v Speaker 1>of Mike and Diane. Not all changes are the same,

0:16:35.400 --> 0:16:38.760
<v Speaker 1>so they really are not created equal. So, for example,

0:16:38.920 --> 0:16:43.080
<v Speaker 1>when the genetic report comes out, the mutation itself needs

0:16:43.120 --> 0:16:48.360
<v Speaker 1>to undergo a really rigorous vetting process to find out

0:16:48.520 --> 0:16:52.760
<v Speaker 1>like where is it located, how does it affect them?

0:16:52.960 --> 0:16:57.440
<v Speaker 1>Genet a significant differences in how strongly they are associated

0:16:57.480 --> 0:17:01.640
<v Speaker 1>with the Kansas syndrome BOSS gastly cancer and the risk

0:17:01.680 --> 0:17:04.879
<v Speaker 1>of developing press cancer. So he looked at Mike and

0:17:04.920 --> 0:17:09.600
<v Speaker 1>Diane's mutation. It's pathogenic, which means it can cause disease,

0:17:10.240 --> 0:17:13.679
<v Speaker 1>and it's a deletion which makes the gene itself abnormal,

0:17:14.240 --> 0:17:18.040
<v Speaker 1>not functioning. But it occurs late in the gene, which

0:17:18.080 --> 0:17:21.760
<v Speaker 1>is good news. That's generally associated with the lower risk

0:17:21.800 --> 0:17:26.520
<v Speaker 1>of gastric cancer. But this is all really preliminary information.

0:17:27.040 --> 0:17:30.720
<v Speaker 1>When you look overall to c d H one motions

0:17:30.760 --> 0:17:33.120
<v Speaker 1>which had this type of mtation, which is very late

0:17:33.160 --> 0:17:36.679
<v Speaker 1>in the gene. You do find a robust decrease in

0:17:36.720 --> 0:17:39.600
<v Speaker 1>the number of patients affected by a ghastly cancer and

0:17:39.680 --> 0:17:42.919
<v Speaker 1>then the number of patients who get the ghastly cancer

0:17:42.960 --> 0:17:45.960
<v Speaker 1>at a young age. But you cannot risk that your

0:17:46.480 --> 0:17:49.800
<v Speaker 1>cousin is this one outlier, and because the results can

0:17:49.800 --> 0:17:52.800
<v Speaker 1>be so dire, this can literally be a life or

0:17:52.880 --> 0:17:56.760
<v Speaker 1>death situation. Most doctors air on the side of caution.

0:17:57.240 --> 0:18:01.240
<v Speaker 1>That's the reason why the current recommendation's current is still

0:18:01.359 --> 0:18:04.600
<v Speaker 1>for created in thirty years of age for these patients

0:18:04.640 --> 0:18:09.000
<v Speaker 1>and to undergo stomach remove you definitely also do not

0:18:09.200 --> 0:18:14.280
<v Speaker 1>want to rule them here. Diffuse, ghastly cans, which is

0:18:14.359 --> 0:18:17.120
<v Speaker 1>spent to lymph nodes or beyond the stomach, is an

0:18:17.200 --> 0:18:21.560
<v Speaker 1>incurable condition and there's no effective treatment in the form

0:18:21.600 --> 0:18:26.960
<v Speaker 1>of chemo, immuno or targeted therapy available for that. So

0:18:27.440 --> 0:18:31.680
<v Speaker 1>what's life like without a stomach? The operation itself is simple.

0:18:32.280 --> 0:18:36.320
<v Speaker 1>Doctor's cut out your stomach, then attach your esophagus directly

0:18:36.400 --> 0:18:39.359
<v Speaker 1>to your small intestine and they sew you back up.

0:18:40.280 --> 0:18:43.200
<v Speaker 1>It's like a really radical version of weight loss surgery.

0:18:44.040 --> 0:18:47.600
<v Speaker 1>Adjusting to the change isn't as easy. Here's Hannah again.

0:18:48.080 --> 0:18:52.399
<v Speaker 1>Remember she had her stomach removed at the age of two. Um,

0:18:52.440 --> 0:18:56.439
<v Speaker 1>it's crazy, it will be two years in May. At first,

0:18:56.600 --> 0:18:58.800
<v Speaker 1>it's so hard, you're kind of like learning how to

0:18:58.840 --> 0:19:02.280
<v Speaker 1>eat again. You're eating the size of a golf ball,

0:19:02.320 --> 0:19:07.800
<v Speaker 1>and it's extremely confusing and kind of messes with your head.

0:19:07.800 --> 0:19:12.359
<v Speaker 1>But I've I've definitely reached a new normal and I

0:19:12.520 --> 0:19:17.399
<v Speaker 1>enjoy pretty much everything that I used to enjoy. The

0:19:17.480 --> 0:19:20.960
<v Speaker 1>thing that surprised me most you don't actually need your stomach.

0:19:21.480 --> 0:19:24.800
<v Speaker 1>It's a bit of a holdover from an earlier evolutionary time,

0:19:25.400 --> 0:19:28.480
<v Speaker 1>a pouch that allowed you to store extra food. Here's

0:19:28.520 --> 0:19:32.159
<v Speaker 1>doctor Strong from Sloane Cattering. So the stomach is really

0:19:32.200 --> 0:19:34.440
<v Speaker 1>it serves as a nice reservoir for you to eat

0:19:34.560 --> 0:19:38.280
<v Speaker 1>bigger portions of food. The absorption of all the new

0:19:38.320 --> 0:19:40.720
<v Speaker 1>trees that you that you need. It happens in your

0:19:40.720 --> 0:19:44.000
<v Speaker 1>small intestine, not in your stomach. There's also the weight issue.

0:19:44.760 --> 0:19:48.080
<v Speaker 1>People lose about their body weight in the first six months,

0:19:48.480 --> 0:19:52.359
<v Speaker 1>then they stabilize and even gain it back. Doctor Strong

0:19:52.520 --> 0:19:56.880
<v Speaker 1>sees it quite a lot. I've had many patients come

0:19:56.880 --> 0:19:58.960
<v Speaker 1>back to me about six months later and they said,

0:19:59.040 --> 0:20:01.399
<v Speaker 1>are you sure you took my stomach out because I

0:20:01.400 --> 0:20:04.200
<v Speaker 1>feel like I can eat normally. Not everyone is like that.

0:20:04.240 --> 0:20:07.040
<v Speaker 1>There's some patients who struggle, but there are a good

0:20:07.119 --> 0:20:09.600
<v Speaker 1>number of patients who really go back to eating so

0:20:09.680 --> 0:20:13.359
<v Speaker 1>comfortably that they say it really doesn't affect their everyday life.

0:20:13.520 --> 0:20:16.400
<v Speaker 1>I even have a few patients who to three years

0:20:16.400 --> 0:20:20.119
<v Speaker 1>after total guests tructy have ended up joining weight watchers

0:20:20.359 --> 0:20:27.480
<v Speaker 1>because they wanted to lose some weight. In the past

0:20:27.520 --> 0:20:31.120
<v Speaker 1>eighteen months, I've talked to dozens of doctors and researchers.

0:20:31.640 --> 0:20:34.959
<v Speaker 1>I've read scores of papers. I've talked to Mike and

0:20:35.000 --> 0:20:38.320
<v Speaker 1>Diane and Hannah and a handful of other patients. This

0:20:38.400 --> 0:20:42.639
<v Speaker 1>is what I've learned. It's all really early. There are

0:20:42.680 --> 0:20:45.879
<v Speaker 1>only about two families with c d H one mutations

0:20:45.960 --> 0:20:50.520
<v Speaker 1>who have been studied by researchers. While geneticists and oncologists

0:20:50.560 --> 0:20:54.000
<v Speaker 1>and surgeons are trying to predict the future, there's just

0:20:54.160 --> 0:20:57.920
<v Speaker 1>not enough information. In the end, it's a gamble, one

0:20:57.960 --> 0:21:00.600
<v Speaker 1>that each patient has to make on their own. So

0:21:00.640 --> 0:21:02.640
<v Speaker 1>the plan at this point is just really to kind

0:21:02.680 --> 0:21:04.240
<v Speaker 1>of keep doing what I'm doing and going up to

0:21:04.280 --> 0:21:08.320
<v Speaker 1>New York every six months, um, you know, letting them

0:21:08.520 --> 0:21:10.720
<v Speaker 1>look and give me a course of actually needs to

0:21:10.760 --> 0:21:14.840
<v Speaker 1>be Mike has had six endoscopies in the past eighteen months,

0:21:15.160 --> 0:21:17.399
<v Speaker 1>and now he's going twice a year to Sloan Cattering

0:21:17.400 --> 0:21:20.120
<v Speaker 1>in New York to keep them up. He also has

0:21:20.119 --> 0:21:23.960
<v Speaker 1>a personal doctor and an oncologist in Florida. But you know,

0:21:24.000 --> 0:21:27.000
<v Speaker 1>there's got to be some percentage for me of chance

0:21:27.080 --> 0:21:33.200
<v Speaker 1>of getting it, and it's just what can you live with?

0:21:31.920 --> 0:21:35.280
<v Speaker 1>And well, yeah, right now, I guess I can live

0:21:35.320 --> 0:21:37.760
<v Speaker 1>with whatever it is because I'm you know, this is

0:21:37.800 --> 0:21:40.520
<v Speaker 1>what I'm what I'm going to do, you know again,

0:21:40.600 --> 0:21:44.200
<v Speaker 1>And in my mind, whether it's five or ten years

0:21:44.200 --> 0:21:47.399
<v Speaker 1>from now, if if nothing's changed, I probably will go

0:21:47.560 --> 0:21:50.119
<v Speaker 1>forward with surgery. You know. At this point, I'm just

0:21:50.160 --> 0:21:54.480
<v Speaker 1>gonna stick with what I'm doing. If he had the surgery,

0:21:54.880 --> 0:21:57.919
<v Speaker 1>he wouldn't have any risk, but he also wouldn't have

0:21:57.960 --> 0:22:00.679
<v Speaker 1>any information to share with his family. So does it

0:22:00.720 --> 0:22:03.840
<v Speaker 1>weigh on you emotionally to have this diagnosis. It does

0:22:03.880 --> 0:22:06.520
<v Speaker 1>weigh on me, not as much as it did initially,

0:22:06.600 --> 0:22:08.000
<v Speaker 1>because I think I'm doing a lot of the right

0:22:08.040 --> 0:22:11.160
<v Speaker 1>things by seeing all these different doctors. Probably the biggest

0:22:12.320 --> 0:22:16.920
<v Speaker 1>reason to not do it is more So for my kids,

0:22:16.920 --> 0:22:21.320
<v Speaker 1>the longer I go without having this cancer is tells

0:22:21.320 --> 0:22:23.479
<v Speaker 1>them more what you know, haning forbid they have this

0:22:23.560 --> 0:22:26.200
<v Speaker 1>gene in the future, what they may need to do. So,

0:22:27.160 --> 0:22:28.520
<v Speaker 1>you know, I'd like to go as long as I

0:22:28.600 --> 0:22:34.320
<v Speaker 1>can without without doing any drastic steps to see if

0:22:34.359 --> 0:22:38.600
<v Speaker 1>that this gene does affect us. Let me tell you

0:22:39.240 --> 0:22:42.720
<v Speaker 1>from me and everyone in my family, we're praying that

0:22:42.800 --> 0:22:46.239
<v Speaker 1>this cancer doesn't become part of the medical history for

0:22:46.320 --> 0:22:55.040
<v Speaker 1>Diane and Mike and his kids. That's it for this

0:22:55.080 --> 0:22:58.960
<v Speaker 1>week's prognosis. Thanks for listening. Do you have a story

0:22:58.960 --> 0:23:01.760
<v Speaker 1>about healthcare and the s or around the world we

0:23:01.840 --> 0:23:04.600
<v Speaker 1>want to hear from you. Find me on Twitter at

0:23:04.640 --> 0:23:08.320
<v Speaker 1>the Cortes or email m Cortes at Bloomberg dot net.

0:23:09.160 --> 0:23:11.480
<v Speaker 1>If you're a fan of this episode, please take a

0:23:11.480 --> 0:23:13.880
<v Speaker 1>minute to rate and review us. It really helps new

0:23:13.920 --> 0:23:17.760
<v Speaker 1>listeners find the show, and don't forget to subscribe. This

0:23:17.800 --> 0:23:21.199
<v Speaker 1>episode was produced by Lindsay Cratterwell. Our story editors were

0:23:21.240 --> 0:23:24.480
<v Speaker 1>Drew Armstrong and Rick Shine. Francesca Leavie has had a

0:23:24.480 --> 0:23:28.639
<v Speaker 1>Bloomberg Podcasts. We'll be back in two weeks on with

0:23:28.720 --> 0:23:30.480
<v Speaker 1>a new episode. See you then,