November 8, 2021

"The recommended treatment is stomach removal."

So begins "A food lover faces an unimaginable choice: Give up her stomach or risk a fatal cancer" (NPR).
I had just learned I carry a genetic mutation that puts me at an incredibly high risk for a rare stomach cancer. This type of cancer is almost impossible to detect in the early, treatable stages — it lurks in the inner lining of the stomach in a lace-like pattern. By the time endoscopies, which give doctors a view into the digestive organ, can see the webby cancer cells forming, they've usually spread to other organs and the disease is incurable.... 

She decides to get the surgery. Wouldn't you? The description of life without a stomach isn't as bad as what I imagined:

But after a year, many people go back to eating all the things they did before surgery, with small portions and a lot of chewing.

I pictured nothing but Ensure, but she is "able to get all the pleasure from food I always have." 

Click through to see her description of all the things she ate when she knew she'd be losing her stomach. But the good news is, she can still eat those things, just in small bites and with a lot of chewing (and with the benefit of knowing she's shut stomach cancer out of her future).

32 comments:

rehajm said...

I’d object if surgery was mandated.

Joe Smith said...

You don't get pleasure from food by swallowing it, but rather from the texture and flavors.

Why not just chew it up, get all the yummy flavors (and some juices that may make their way down), and spit it out?

It would be gross at a restaurant but perfectly acceptable at home.

Achilles said...

I think she may have jumped the gun.

Within a generation cancer will not be a thing.

But we will also be able to get much better stomachs too.

Gahrie said...

This article is a perfect example of why the Democratic Party have been fear-mongering for the last seventy years.

Amy said...


I have mixed feelings about this. As a breast cancer survivor, I have had all the tests and all are negative (so far, as they are identifying new mutations all the time). A friend who is BRCA+ had a preventative hysterectomy some years ago. She was just diagnosed with pancreatic cancer - NOT the death-sentence kind everyone automatically thinks of, but a BRCA-driven kind that settled in her pancreas. It makes me wonder if the mutation drives tumor cell growth, and if the most usual organs that it settles are not there, it just settles somewhere else. I would probably have the surgery too, but I do wonder about that. They will know more in years to follow, when we see outcomes for those who had preventative surgery. It is too soon to tell. But this is where we are now and you have to go to war with the weapons you have. I wish her well.

Joe Smith said...

'I think she may have jumped the gun.'

Good thing she's not a horse...

Wince said...

How different is this than stomach reduction surgery?

And one might expect plenty of tissue donors for a stomach transplant procedure?

rcocean said...

And she was hit a car early this morning.

Sads.

Eleanor said...

Just make a list of all the body parts you can live without and have them removed to cut down on the risks from diseases. Your quality of life may be affected in ways you might not have imagined, but it's worth the risk to alleviate some of your fear of a disease you might never get. Of course, you can't eliminate all of the risk because there will be some body parts you might not be able to live without so you'll still have a lot of fear left. Or you could just reconcile yourself to the reality that we're all going to die some way and live your life, however much you get, to the fullest with your body intact.

Chris said...

My brother is obese. He had his stomach basically removed and he lost over three hundred pounds. Started out couldn't hardly eat much. It was too painful. Very small portions. But guess what, after a year or so, he was right back to eating huge portions and gained well over 200 lbs back. Losing his stomach wasn't much of a hurdle to weight gain. To me, he wasted 50000 with that surgery.

Temujin said...

Of course it's an individual's decision, but as pointed out, there are other genes that can leave one predisposed to a form of cancer. Not everyone chooses to have a mastectomy if they have the BRCA1 or BRCA2 gene mutations. There's much to that decision.

I, for one, would be getting multiple opinions before having any body parts removed out of fear of what might happen. But that's me. I will say that I know people in my own life who are, what I call, a person in search of a disease. Some people seem almost enamored with the idea of getting a major disease. They are the type of people who listen regularly to various medical podcasts from doctors or researchers, go to various types of doctors (not just regular MDs but also Functional Med docs, and other 'alternative' docs), and get onto an every growing array of supplements and/or acupuncture to help prevent things they do not have. Not that any of that is bad behavior. it's certainly proactive behavior. There's nothing wrong with Functional med docs, or listening to medical podcasts. But some people look like they are in search of something that they must have and sound almost disappointed when they find out that they do not.

This person sounds like one of those people living in fear that she might die. And...she's right. We will all do that. The trick is not to live in fear spending your life looking for the way you're going to die. But to live life fully. Being careful is good. Being sure you're going to get a disease that can only be prevented by removing body parts is another step.

Gilbert Pinfold said...

Back when the science was "settled" that ulcers were caused by stress and/or genetics, my father had his stomach removed to prevent duodenal scarring. After surgery, he could eat anything in smaller amounts, and even spicy food that previously was problematic. Of course, later two scientists from Australia suggested that ulcers were caused by a previously unknown bacterium, Helicobacter pylori. The scientific community howled--how could a bacterium live at the low pH of stomach acid? Oral antibiotics were then shown to cure ulcers, and the scientists won a Nobel Prize in medicine two decades later. Pardon me whilst I remind that science is never "settled", it is a process for formulating and testing hypotheses that that help us model the real world. Et tu, "climate change", COVID immunology, etc.?

Ice Nine said...

Shorter Sasa Woodruff: I have to have my stomach removed to prevent dying from cancer. I thought that meant I wouldn't be able to eat all the things I used to love to eat. But it doesn't mean that. So, cool.

Michael K said...

Women tend to end up underweight after total gastrectomy. Men have less long term effect. Not sure why. Many such surgeries were done for cancer which has poor long term results so there are not that many long term examples.

campy said...

"Within a generation cancer will not be a thing."

You think government-run healthcare is going to cure cancer?

HAHAHAHAHAHAHAHAHAHAHAHAHA

For the elites? ... Maybe.

For us peasants?

HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA

mezzrow said...

I can speak to this, as it is something I also experience to some degree as a survivor of throat cancer. Just over two years past treatment.

I was, and am, a great food lover as well. Baked my own bread (no more), and I do the cooking as my wife does the cleaning. A perfect arrangement, which still holds. Our situations are different in that she can chew and swallow exactly as always before, but lacks the stomach to hold what she eats. With time, from my standpoint, I hope she'll be fine and her harrowing last two years were far worse than her next two years of adjustment to her changed situation will be.

Still...

There are always minuses when your life changes like this - you miss what you cannot do with pleasure as you once did. As your processor has been altered by treatment to kill the cancer, what and how you eat will change. Soup is good food. Bread is right out. Meat loses its charm, other than as a condiment to accompany other things. There is more, but that's a guide.

On the other hand, I lost a third of my body weight and am now in the center of what I should be at my height and age. I had hypertension then, and do not now. I had high blood pressure then, and do not now. My medications are multi-vitamins and a supplement to replace lost thyroid function. They were far more extensive at my former weight. I just got in from a four mile walk that I never would have done before this happened.

If you can still count, don't forget to count your blessings. We're more resilient than we think we are. Life keeps coming at you until you wake up dead.

Christy said...

I suspect, like many women, she's been discussing for years prophylactic mastectomies with friends who've faced that choice. The concept isn't new. Her decision on such has been long considered.

Howard said...

Lots of cancer in her family. She had surgery in October, no word if they found cancer in the removed parts. She might not have had a generation to wait for a cancer-free Shangri-La. Not quite as bad as Sophie's Choice, but bad.

Narayanan said...

rehajm said...
I’d object if surgery was mandated.
-----------
if they would mandate ingestion from the other end - wont need stomach at all

should be a hit on college frats

tim maguire said...

The fact that you can still enjoy food in some manner makes it a much easier decision. Still, I'd wait as long as I safely could.

rcocean said...

I would have to know what "High risk" was. 20%, 50%, 89%? What age do these cancers appear?

Because guess what? There's a risk the sugery will go wrong. They never talk much about that. Yeah, its 99% safe, which is great unless you're the 1%

Skippy Tisdale said...

"I think she may have jumped the gun.

Within a generation cancer will not be a thing."

My first thought. I have a niece who has a genetic predisposition for an aggressive form of breast cancer. Her aunt (they were very close) died from it, so at the age of about 16, she had a double mastectomy as a preventative (hopefully the type that leaves the nipples intact, resulting in better reconstructive surgery outcomes). I never asked. Just a few short years later and they are using genetic treatments for that very type of cancer now. I do respect her personal decision.

SteveWe said...

For me, I choose to accept fate. I would never consent to premature surgical intervention. And in most cases would not consent to chemotherapy for diagnosed cancer. I've been at peace with my death for a long time.

dreams said...

My mother's friend and a relative of my dad had diphtheria as a child and it left her throat so scarred that she couldn't swallow her food, she had a funnel tube in her belly that went into her stomach and she would spit her food into the funnel after chewing. She didn't eat in public but my mother said that she had seen her eat at her home. She married my great uncle who had a cleft lip and cleft palate and only those who were around him a lot could understand him when he talked. They had a good life and had four children who were very popular growing up.

Yancey Ward said...

Recent photos of her seem to show she is in her thirties, so this is probably a reasonable choice if the risks are really as high as she indicated in the article.

Critter said...

We receive many blessings from modern medicine and should remember that when discussing the COVID jab. Most medicine has not been hijacked by politics.

Lewis said...

My wife had a skull base brain tumor removed about 2-1/2 years ago. It was wrapped around several cranial nerves on one side of her brain stem. She lost her most of her ability to swallow (amongst other things) because of it. Her primary nutrition is formula delivered through a feeding tube. She can eat ice cream and yogurt and white cheddar cheese puffs. She cooks me dinner pretty much every evening and can't eat any of it. We don't go out to eat anymore because what's the point - she would have to watch me eat.

A hard thing but we've learned to accept and make the best of it.

Michael K said...


Blogger Wince said...

How different is this than stomach reduction surgery?


I think this may have played a role in the use of gastric stapling, then gastric bypass for morbid obesity. Gastric bypass was actually the first method but was much more difficult in the morbidly obese. Intestinal bypass was much easier and worked but the long term problems ruled it out. About 25% of patients got liver failure. Usually that was reversible with reversal of the bypass.

L Day said...

I know of a family in which the gene that results in stomach cancer for something like 95% of those who carry it is widespread. When they found out the patriarch of the family carried this gene, Doctors recommended that all of his descendants get tested. One or two didn't want to know and refused the test. Among those who did get tested several carried the gene and decided to have their stomachs removed. One or two had the early stages of the cancer, so the operation clearly seems to have been life saving for them. All who had the surgery are doing well. One odd thing, the patriarch, the one that the gene can be traced back to is in his mid to late 90s and has never developed the cancer.

Mark said...

She decides to get the surgery. Wouldn't you? The description of life without a stomach isn't as bad as what I imagined:
But after a year, many people go back to eating all the things they did before surgery, with small portions and a lot of chewing.

She only just got the surgery. So that's not HER testifying to what it would be like. That's spin from the pro-surgery folks. I know someone who has his own digestive issues and has faced having to research having his entire bowel removed. Of course all the medical sites tell folks how wonderful it is.

Would I get the surgery? Maybe, maybe not.

Would I get PRE-EMPTIVE surgery? Absolutely not.

Don't trust the pro-surgery crowd to give you the full facts.

rcocean said...

"I've been at peace with my death for a long time."

That makes two of us.

richlb said...

I once watched a video of a guy who had attempted to kill himself by drinking Drano. He survived, but it destroyed the upper part of his digestive system. In order to save him doctors removed everything from his throat to the start of his small intestine. They directly attached his intestine to his esophagus running it over his ribcage. He had to eat tiny bites and use his fingers to help push food into his remaining digestive tract. Crazy.