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How genetic testing led a food lover to live without a stomach

AILSA CHANG, HOST:

Sasa Woodruff loves food. We're talking about her mom's dishes from Slovakia made with beef, celery root and potato or baking her own confections like berry tarts with pastry cream or brewing jalapeno soda. She's been accused of having way too many cookbooks.

ADRIAN FLORIDO, HOST:

But her relationship to food was forever changed by a phone call she got in 2019 from an unknown number.

SASA WOODRUFF, BYLINE: He said, I'm Dr. Richard Frieder. I'm the medical director at Telligen Cancer Genetics, and I have some new information for you. I have this report.

FLORIDO: Woodruff had tested negative for the breast cancer genes known as BRCA three years before that call.

CHANG: But the doctor told Woodruff, thanks to new research, they could now tell she had a different dangerous mutation called CDH1, putting her at high risk for a rare stomach cancer.

WOODRUFF: I was shaking and just really flustered because I really wanted this to be a spam phone call, but it wasn't.

CHANG: Woodruff met with a genetic counselor who suggested she should get her stomach removed.

WOODRUFF: I figured I would do more research and kind of prove that my genetic counselor was wrong because I think you have, like, these images of not being able to eat, maybe having a feeding tube. You know, and then I thought, do you want to live such a compromised life for something I love so much? I love food. And so you do question whether that's a life worth living.

FLORIDO: Woodruff, who's a public radio journalist, spent years investigating the CDH1 mutation. And eventually, she did get her stomach removed.

CHANG: Sasa Woodruff wrote about it for NPR before her surgery last October, and she recently spoke with our co-host, Ari Shapiro.

ARI SHAPIRO, HOST:

What's life for you been like lately since your gastrectomy? How have you been feeling? How have you been eating?

WOODRUFF: You know, I'm actually surprised at how well I've been doing. I actually was back to pretty normal foods about a month after surgery. For the most part, I eat whatever I want. Sugar is difficult because instead of it breaking down in the stomach, it hits your bloodstream immediately. So I've been avoiding sugar, but I've been pretty much eating everything that I want - of course, in small amounts. There's a really weird sensation where I feel hungry, but I'm full so I can't eat. So it's really hard to explain, and I don't think anyone who still has a stomach won't understand it.

SHAPIRO: And so without a stomach, how does your digestive system actually work now?

WOODRUFF: You know, once you don't have a stomach, you actually realize that you don't really need one. So once they took out my stomach, they actually attached my esophagus to my small intestine. So basically, that kind of fermenting pot that is your stomach, that has the acids that breaks your food down - that is gone. And so it goes straight from the esophagus into the small intestines. And actually, most digestion happens in the small intestines. It's just a little bit broken down, so you do have to chew more and eat slower, but digestion happens pretty normally. It's kind of amazing that we don't need a stomach.

SHAPIRO: This is such a contrast with the fears that you describe when you first had the conversation about potentially having your stomach removed. And I want to rewind the clock even before that to your decision to get genetic testing in the first place. Why did you go that route?

WOODRUFF: So there's always been cancer in my family. It was - so both of my maternal grandparents died of cancer. My great-grandmother had a double mastectomy for breast cancer. My mom had breast cancer when I was in my - in elementary school. So it just - it felt like it was all around me.

And so I really was concerned about the breast cancer, and I thought, well, I don't really need to get genetic testing because I need to be in a high-risk group. I need to do extra testing. So why do I need to know about the genes?

And then, you know, my sister was diagnosed with pancreatic cancer, and I was getting a routine physical, and my doctor said, well, do you want to just get a test? It's here. Some of my apprehensions were still there, but I just decided to do it because it was easy. So I did that test, and it came back negative, and I actually really thought that that was all that there was going to be.

SHAPIRO: And then you get this phone call years later. Did you resent the doctor for giving you this news about a test that you had not explicitly asked for? Was there a part of you that said, like, I didn't want this information?

WOODRUFF: Yeah. I mean, I think - I didn't necessarily even want to know if I had the breast cancer gene. So I think I didn't want to know any of this. And, you know, as much cancer as we had, I think you can go into the - this couldn't happen to me. I will be the exception.

SHAPIRO: You kind of talked to the doctor about that, right?

WOODRUFF: I did. A few months before I had my surgery, I decided to go back and interview Dr. Richard Frieder. And he was very gracious, and he - you know, he said, I wondered what happened to you because he hadn't heard from me in so long and, you know, we had never met. So I decided to just go in and ask him because this phone call was so - I would say traumatic for me. And so I just - I wanted to know, like, what is going through a doctor's head when they are delivering this kind of news?

RICHARD FRIEDER: There are bad-news moments in our lives as doctors. Contrary to what you might think, I was calling you with what I thought was good news because it wasn't a destiny, it was an opportunity - an opportunity to save your life.

WOODRUFF: This was such a revelation to me because it completely switched how I perceived this phone call because, you know, when you think about delivering a cancer diagnosis, you know, when you think about it, there's a big range of my chances for getting stomach cancer. It goes from probably, like, somewhere in the 40s to 80%. So to think that I went from having an up to 80% chance of getting a cancer that they really have no good way of diagnosing before it's spread and is terminal to 0% chance.

SHAPIRO: Yeah.

WOODRUFF: Like, I'm really thankful for that now. I mean - but it does take a lot of psychological work to get to that point.

SHAPIRO: So is the testing that led you down this path becoming more widely available? Is this something that more people are going to have opportunities to do if they want to?

WOODRUFF: Yes. And, you know, obviously, I think there are ethics of testing everyone. You know, do you want everyone to know every little gene mutation they have that could potentially become something? You know, I think this is the curse and the blessing of being at the forefront of technology.

SHAPIRO: Yeah.

WOODRUFF: Which I really am - you know, they could come back and figure out a way to fix this, but at this point, this is what's available. And so I asked Frieder this question, and I said, you know, how would you advise someone in your family, or if you had this, would you do it? And he told me that if his daughter had this gene, that he would absolutely have her have the surgery and have it done as soon as possible.

FRIEDER: It's a hard decision, but it's the right decision to make based on what we know. And if in 20 years, we look back and say, gee, it didn't really need to be done, so be it.

WOODRUFF: You know, one of the things I was afraid of is, what if in two years, they find something where they can actually monitor for this so I won't have to have it? And I think he helped clear it up that, OK, so maybe we will find a cure or a better way to deal with this, but that's OK. Like, you made this decision, and you'll live with it, and your life will be OK.

SHAPIRO: Sasa Woodruff, thank you for sharing your story with us.

WOODRUFF: Thanks, Ari. Transcript provided by NPR, Copyright NPR.