Stomach Removal Surgery

[Stormy]

11 cousins have stomachs removed to avoid cancer risk

LOS ANGELES, California (AP) -- Mike Slabaugh doesn't have a stomach. Neither do his 10 cousins.

Growing up, they watched helplessly as a rare hereditary stomach cancer killed their grandmother and some of their parents, aunts and uncles.

Determined to outsmart the cancer, they turned to genetic testing. Upon learning they had inherited grandmother Golda Bradfield's flawed gene, they had two options: Risk the odds that they might not develop cancer, with a 70 percent chance they would; or have their stomachs removed. (Watch a family decide to act to stop cancer -- 5:17)

The latter would mean a challenging life of eating very little, very often.

All the cousins chose the life-changing operation. Doctors say they're the largest family to have preventive surgery to protect themselves from hereditary stomach cancer.

"We're not only surviving, we're thriving," said Slabaugh 16 months after his operation at Stanford University Medical Center in Palo Alto.

Advances in genetic testing are increasingly giving families with bad genes a chance to see the future, sometimes with the hope of pre-emptive action. People have had stomachs, breasts, ovaries, colons or thyroid glands removed when genetic tests showed they carried a defective gene that gave them a high risk of cancer.

But what about people whose families don't have these rare, but powerful genetic defects? Experts say that someday, doctors may do DNA tests as routinely as they check cholesterol levels now, spotting disease risks that can be lowered. That day isn't here yet, but progress is being made.

"We do not yet have a general DNA test that fits into that category, but we're headed for it at a pretty good clip," said Dr. Francis Collins, head of the National Human Genome Research Institute.

Slabaugh, who lives in Dallas, reunited with his many scattered cousins recently in Las Vegas just two months after the last in the group -- Bill Bradfield of Farmington, New Mexico -- had his operation. Several hadn't seen each other for decades while others met for the first time.

They gambled, went to shows and dined in the City of Sin.

"Rather than live in fear, they tackled their genetic destiny head-on," said Dr. David Huntsman of the University of British Columbia, who found the gene mutation in the family.

About 22,000 Americans will be diagnosed with stomach cancer this year and half will die, according to the American Cancer Society. But the form that runs in the Bradfield family, called hereditary diffuse gastric cancer, is extremely rare with about 100 families diagnosed worldwide.

The CDH1 gene mutation was first discovered in 1998 in a large New Zealand family with a history of stomach cancer. Those with the mutation have a 70 percent risk of stomach cancer.

It killed Golda Bradfield in 1960. She passed the faulty gene to seven of her children. Six died of the disease in their 40s and 50s.

The grandchildren learned of the defective gene after one of them, David Allen, died of stomach cancer in 2003. His doctor had sent a blood sample to Huntsman's lab, which confirmed the genetic mutation.

Soon after, the remaining 17 got tested. Eleven who had the bad gene had surgery.

Slabaugh, haunted by his mother's death since his teen years, didn't hesitate to have the operation. He and five other cousins had it done at Stanford. The other family members had surgery closer to home.

"I wake up every morning and think, 'This is a free day. I get a bonus today,"' said the 52-year-old marketing executive.

Digestion in small intestine
During surgery, doctors removed the entire stomach and surrounding lymph nodes and attached the bottom of the esophagus to the intestine to create a pouch. Without a stomach, patients typically lose significant weight and must eat smaller meals more often. They can still digest food through the small intestine.

Insurance paid for part or all of the procedure, which cost between $65,000 and $85,000.

While the stomachs of all six Stanford patients looked normal before surgery, a study of the tissue revealed early tumor growths, said Dr. Jeff Norton, the surgeon.

The long-term effects of stomach removal surgery are still unclear. Researchers around the world are following families with hereditary stomach cancer to find out how the procedure affects quality of life.

Before Diane Sindt and her two older sisters had their stomachs taken out, they ate their "last supper" during Thanksgiving. True to their sisterly bond, they scheduled their operations at Stanford on consecutive days in December 2004.

Smaller portions, smaller sizes
The upside is that Sindt dropped from a size 12 to a 2 since the surgery. But she has trouble keeping down certain foods like ice cream and tends to shed weight easily if she over-exercises. To overcome it, Sindt sticks with meat and has replaced running with "power walking."

"It's definitely a new normal for us," said the 51-year-old real estate broker from the Sacramento area.

Unlike his other cousins, Bill Bradfield of New Mexico wrestled over what to do. He wondered how his life would change without a stomach. Would he still have enough energy for his demanding job as a mechanic for a natural gas company?

But after watching his other cousins slowly regain parts of their former lives, Bradfield went ahead with the operation at the University of Texas M.D. Anderson Cancer Center in March, becoming the last in the family to give up his stomach.

"We're all going to die of something," he said, "but I know I won't die of stomach cancer."

http://www.cnn.com/2006/HEALTH/condi....ap/index.html

I understand why these people had this surgery, and might do the same thing in their situation (although I SURE would hate to give up bingeing, and would probably become an alcoholic) but the bolded paragraph disturbs me. Why is going from a size 12 to a 2 automatically a good thing? Especially a size 12 who can eat a balanced diet and get plenty of exercise to a 2 living on meat and limited exercise? I think some studies have shown that a high fat, low fiber diet increases the risk of colon and maybe other types of cancer. These people look emaciated to me, especially the three on the right, and the one on the left just had his surgery two months before the picture was taken. It seems to perpetuate the disturbing attitude that thinner is always healthier and better. Gee, why didn't they remove some of their intestines too and maybe they could be a size 0, or even disappear completely? Yay.

[Jes]

I find your comment about the language used valid. Have you considered emailing your succinct comments to the author? Usually the by-lines are available and you can email the journalist/reporter.

[BeautifulPoeticDisaster]

Those women look ill. It's sad that this society cherishes someone that thin, but despises someone my size...tis a mystery!

[Jes]

BB, do realize that while they might not look good in your eyes, they weren't going for weight loss, but for a life (hopefully) free of cancer. I would imagine their decisision was pretty harrowing.

[BeautifulPoeticDisaster]

Originally Posted by Jes

BB, do realize that while they might not look good in your eyes, they weren't going for weight loss, but for a life (hopefully) free of cancer. I would imagine their decisision was pretty harrowing.

Jes, I wasn't chastizing them.....I would do the same....I was stating that it is sad that this SOCIETY thinks they look healthier....thats all I meant. Maybe it came out wrong in my post....but I was just trying to point out that society looks at thin as being healthier at all costs. What if the same scenerio was told except someone had to have something removed which caused WG instead of loss? Thier act would be just as harrowing, but I bet mention would be made of how they are going to have to life a life overweight.(insinuating that over weight is bad while praising being a size 2 as good) Hope Im coming across as making sense.

[Miss Vickie]

I agree, Stormy. They look dreadful. I don't disagree with the choice they made, but you're right, the automatic assumption that they're better off at a size 2 is wrong. (Interestingly, I missed that on the first read -- which shows to me how much subtle size-ism there is that I'm probably missing on a daily basis).

[fatlane]

They have to watch out they don't exercise too much... man, stomach removal is tough. Seriously, that's a BAD problem to have.

[TraciJo67]

Stormy, I saw this family on a talk show. I agree, some of them look gaunt and very unhealthy. Then again, cancer doesn't exactly convey a glow of good health I feel for them, that they had to make such a terrible decision.

[Stormy]

I don't blame them at all for having the surgery, and agree that it's a horrible decision for someone to have to make. My problem with the article is describing going from a size 12 to a size 2 as an "upside" as if thinner is automatically better, especially getting that thin.

I did e-mail CNN my comments (minus the part about not wanting to give up bingeing ). Thanks for the idea, Jes.

[EvilPrincess]

Originally Posted by Stormy

I don't blame them at all for having the surgery, and agree that it's a horrible decision for someone to have to make. My problem with the article is describing going from a size 12 to a size 2 as an "upside" as if thinner is automatically better, especially getting that thin.

I did e-mail CNN my comments (minus the part about not wanting to give up bingeing ). Thanks for the idea, Jes.

The interview with this family on the Today Show also had the same thin=positive message as the article. The most outstanding for me was that one of the hosts asked about weight loss, and they mentioned that one of the ladies had lost quite a bit of weight. This of course lead to the before and fat picture, then the flash to the thin and better picture. I think that the attitude of the hosts and brining this up in the way they did, the smiles and the crowds response took away from the seriousness of all of those people having to have their stomachs removed.

Did people not get it, they had their stomachs removed, so they would not die of cancer.

[Santaclear]

My grandma (now long gone) had stomach cancer and got that surgery I think just before I was born. If I remember correctly the surgery was considered kinda experimental and they were pleasantly surprised it worked. She was definitely plump, maybe fat beforehand but by the time I can remember her she was small and wiry. Never ate full meals so she often brought food around with her wrapped in paper towels and stuff, snacking throughout the day.

(I totally agree that the thin=positive message sucks.)

[Jes]

Originally Posted by EvilPrincess

The interview with this family on the Today Show also had the same thin=positive message as the article. The most outstanding for me was that one of the hosts asked about weight loss, and they mentioned that one of the ladies had lost quite a bit of weight. This of course lead to the before and fat picture, then the flash to the thin and better picture. I think that the attitude of the hosts and brining this up in the way they did, the smiles and the crowds response took away from the seriousness of all of those people having to have their stomachs removed.

Did people not get it, they had their stomachs removed, so they would not die of cancer.

yeah, that's bullshit. And the point is--we don't have the data to know if 30 years of using yoru intestines as your stomach won't give you intestinal cancer. I mean, I think they did the right thing, but it's not like we should be clapping and saying: Wheee! All we can say at this point is: Well, they're alive now and best of luck! If they can't eat much fiber,etc., and their intestines/colons aren't being put through their paces, that's not gonna be very good for the back door long-term, now is it?
I'm obsessed with the back door, of late. Who wants to hear more about that? Hmmn? No one? Oh.

maybe we should all write cnn's journalist. That's bullshit. Find me that addy, Stormster! Post! Post!

[Stormy]

I submitted my comments through this form:

http://www.cnn.com/feedback/forms/form1.html?35

[Sandie_Zitkus]

My question is this:

If you have the cancer gene you have it no? If you remove the stomach as a pre-emptive strike won't the cancer show up somewhere else??

[Jes]

Originally Posted by Sandie_Zitkus

My question is this:

If you have the cancer gene you have it no? If you remove the stomach as a pre-emptive strike won't the cancer show up somewhere else??

I admit I know nothing about cancer, but I imagine some types are location/tissue-type specific. The lining of the stomach is a special type of tissue so if it differs from other types, then perhaps you ARE saving your life or at least buying yourself significant time.

Think of it like pre-emptive mastectomies for women who have the breast cancer gene or have had breast cancer, etc. etc. You're not going to get breast cancer in your foot.

[Sandie_Zitkus]

Not sure I buy that Jes. I had two Uncles die from cancer - both cancers started in the lungs and moved on to other organs.

Originally Posted by Jes

I admit I know nothing about cancer, but I imagine some types are location/tissue-type specific. The lining of the stomach is a special type of tissue so if it differs from other types, then perhaps you ARE saving your life or at least buying yourself significant time.

Think of it like pre-emptive mastectomies for women who have the breast cancer gene or have had breast cancer, etc. etc. You're not going to get breast cancer in your foot.

[TheSadeianLinguist]

I guess it depends on what you value in life to decide if this is worth it. If my life has to be about eating like a trained animal, not doing the activities I want, when I want, then I'd rather deal with a 70% chance of cancer. Without being ugly or offending anyone, I think I'd just live a pleasant life until I found out I had some horrible cancer like that and then probably kill myself.

[Sandie_Zitkus]

I agree - just because you have a family history of cancer it by no means is a sentence of cancer for you. I think what these people did was barbaric. It's like cutting off your arms and legs because you might break one at some point and might get a blood clot that might kill you.

Shame on the doctors who did this to healthy people.

Originally Posted by TheSadeianLinguist

I guess it depends on what you value in life to decide if this is worth it. If my life has to be about eating like a trained animal, not doing the activities I want, when I want, then I'd rather deal with a 70% chance of cancer. Without being ugly or offending anyone, I think I'd just live a pleasant life until I found out I had some horrible cancer like that and then probably kill myself.

[TraciJo67]

Originally Posted by Sandie_Zitkus

My question is this:

If you have the cancer gene you have it no? If you remove the stomach as a pre-emptive strike won't the cancer show up somewhere else??

Sandie, it does depend on the particular gene. Geneticists can tell if a cancer is of the type that will develop in one location. It is why women who are at extremely high risk for breast cancer will often elect to have their breasts removed. My husband's sister, in fact, chose to do this to a healthy breast because her oncologist told her that she had a very high risk of cancer developing in that breast.

[TraciJo67]

Originally Posted by Sandie_Zitkus

I agree - just because you have a family history of cancer it by no means is a sentence of cancer for you. I think what these people did was barbaric. It's like cutting off your arms and legs because you might break one at some point and might get a blood clot that might kill you.

Shame on the doctors who did this to healthy people.

Sandie, if you read any of the articles, it does say that nearly all of them had early cancer or a pre-cancerous condition in their stomachs.

[Sandie_Zitkus]

Originally Posted by TraciJo67

Sandie, if you read any of the articles, it does say that nearly all of them had early cancer or a pre-cancerous condition in their stomachs.

I still disagreee with removing their stomachs and I completely disagree with removing a breast because you might get cancer. It's butchery. Many more people over the last 10 years have been curing themselves of cancer by changing diet. Maybe Doctors should give that option first.

I know we're not gonna agree on this Traci. But that's OK.

BTW - congrats on the baby - I hope it all works out for you.

[TraciJo67]

Originally Posted by Sandie_Zitkus

I still disagreee with removing their stomachs and I completely disagree with removing a breast because you might get cancer. It's butchery. Many more people over the last 10 years have been curing themselves of cancer by changing diet. Maybe Doctors should give that option first.

I know we're not gonna agree on this Traci. But that's OK.

BTW - congrats on the baby - I hope it all works out for you.

Sandie, I hope that you never have to make such an awful decision. My SIL chose to remove a healthy breast because her other breast was riddled with cancer, and her oncologist told her that the type & stage of her cancer -- very, very aggressive -- offered her very poor odds on the other breast remaining healthy. She chose to have it removed because she could not live with the fear. I do not believe that anyone should second guess such a private and agonizing decision or call it "butchery". She did what she felt she must do to survive. To claim that she could possibly cure her cancer by "changing diet" is, to me, a very dangerous form of denial. This isn't a gray area. Geneticists HAVE pinpointed the breast cancer gene (BRCA mutation), and can say with a high degree of accuracy what the odds are of developing cancer if you have that particular mutation.

Regarding the family with the mutation that causes stomach cancer: Their surgeon found cancer or a pre-cancerous condition in all but one of their stomachs. I just don't understand how this can be a topic for debate. I feel badly for them. They had a horrible decision to make. I wouldn't presume to second guess their choices.

[Sandie_Zitkus]

Traci it can be very difficult to have a discussion with you at times. I'm not second guessing anyone. I'm stating my opinion.

Do a google search on macro-biotics and see how that diet can and has cured cancer. It's not nonsense it's fact.

I'm done with this discussion with you. Take care.

Originally Posted by TraciJo67

Sandie, I hope that you never have to make such an awful decision. My SIL chose to remove a healthy breast because her other breast was riddled with cancer, and her oncologist told her that the type & stage of her cancer -- very, very aggressive -- offered her very poor odds on the other breast remaining healthy. She chose to have it removed because she could not live with the fear. I do not believe that anyone should second guess such a private and agonizing decision or call it "butchery". She did what she felt she must do to survive. To claim that she could possibly cure her cancer by "changing diet" is, to me, a very dangerous form of denial. This isn't a gray area. Geneticists HAVE pinpointed the breast cancer gene (BRCA mutation), and can say with a high degree of accuracy what the odds are of developing cancer if you have that particular mutation.

Regarding the family with the mutation that causes stomach cancer: Their surgeon found cancer or a pre-cancerous condition in all but one of their stomachs. I just don't understand how this can be a topic for debate. I feel badly for them. They had a horrible decision to make. I wouldn't presume to second guess their choices.

[TraciJo67]

Originally Posted by Sandie_Zitkus

Traci it can be very difficult to have a discussion with you at times. I'm not second guessing anyone. I'm stating my opinion.

Do a google search on macro-biotics and see how that diet can and has cured cancer. It's not nonsense it's fact.

I'm done with this discussion with you. Take care.

You stated that removing a healthy breast due to a known genetic mutation that causes breast cancer is "butchery". I shared that my SIL had her breasts removed. I was a bit put off by (what I felt was) your callous use of the word. I know what she went through, and how much it cost her emotionally (a young woman of 36 at that time) to have both of her breasts removed. How would you feel, faced with such a decision, if some stranger told you that what you did was "butchery" and unnecessary?

Sandie, if you or a loved one is ever diagnosed with a devastating illness such as inflammatory breast cancer, and every medical expert that you speak to -- oncologist, radiologist, geneticist -- tells you that the best hope of a cure lies with removal of all breast tissue, INCLUDING healthy tissue, followed by aggressive chemotherapy & radiation treatment .... then, I suppose, you can decide if you'd like to ignore their advise and stick to a macrobiotic diet. Hopefully, this is never a decision that you have to make.

BTW, the American Cancer Society calls a macrobiotic diet another example of quackery. They not only call the treatment questionable -- they claim that it can do harm, by causing rapid weight loss in patients who are already in a weakened state.

[Sandie_Zitkus]

Traci grow up. You are not right about everything.

Your SIL did what she thought was right. It's not what I would do. Because I have a different OPINION.

Don't make assumptions about what I have and have not had to deal with health wise in my family OK sweetie? I'm sick to death of your condescending attitude that no one but YOU knows what's right when it comes to health issues. Get a grip.

You wanna argue with someone - it aint me today sweetheart - I'm too busy packing.

And of course the ACS says a Macrobiotic diet is quackery - if they can't make a buck they try to discredit it. That includes herbs. Eastern medicine has been curing millions of people long before western medicine was even a thought. Tell the people that have been cured of cancer by changing diet that it's quackery OK, you're so friggin arrogant.

And IN MY OPINION it IS butchery to remove a healthy breast. Period. MY OPINION. Not YOURS. There is a very easy way to tell the difference between my opinion and yours - I post mine you post yours. OK? Better now?

Now - for anyone else who cares - THIS IS JUST MY OPINION AND I AM NOT TELLING ANYONE ELSE HOW TO DEAL WITH OR CURE CANCER. IF I KNEW HOW TO CURE CANCER I'S BE RICH.

Now I am done Traci - I'm putting you back on ignore - rant away.

Originally Posted by TraciJo67

You stated that removing a healthy breast due to a known genetic mutation that causes breast cancer is "butchery". I shared that my SIL had her breasts removed. I was a bit put off by (what I felt was) your callous use of the word. I know what she went through, and how much it cost her emotionally (a young woman of 36 at that time) to have both of her breasts removed. How would you feel, faced with such a decision, if some stranger told you that what you did was "butchery" and unnecessary?

Sandie, if you or a loved one is ever diagnosed with a devastating illness such as inflammatory breast cancer, and every medical expert that you speak to -- oncologist, radiologist, geneticist -- tells you that the best hope of a cure lies with removal of all breast tissue, INCLUDING healthy tissue, followed by aggressive chemotherapy & radiation treatment .... then, I suppose, you can decide if you'd like to ignore their advise and stick to a macrobiotic diet. Hopefully, this is never a decision that you have to make.

BTW, the American Cancer Society calls a macrobiotic diet another example of quackery. They not only call the treatment questionable -- they claim that it can do harm, by causing rapid weight loss in patients who are already in a weakened state.