Not for the squeamish
January 27, 2010 3:31 AM Subscribe
My dad has been diagnosed with cancer - malignant carcinoma in his stomach where the esophagus joins the stomach. They are going to remove his stomach! Has anyone had any experience of this personally or of a relative?
The cancer is small - they found it while looking for possible causes for another ailment he has. The oncologist believes removing the stomach is the best course of action. No one in my family had any idea you can live without a stomach, but apparently you can as long as adjustments to your diet and lifestyle are made. They will basically tie his esophagus to his small intestine.
My mother is understandably freaked out which is the main reason for asking. Dad is quite stoic, 66 and in ok shape (non-smoker, light drinker and retired). What sort of effect is this likely to have on his diet and digestive system? Does anyone know? Googling gives me a lot of medical info that I find a bit impenetrable. Maybe I'm googling the wrong words? I'm not looking for sympathy just some advice on what to expect or where to get information in easy to understand terms. Thanks everyone.
The cancer is small - they found it while looking for possible causes for another ailment he has. The oncologist believes removing the stomach is the best course of action. No one in my family had any idea you can live without a stomach, but apparently you can as long as adjustments to your diet and lifestyle are made. They will basically tie his esophagus to his small intestine.
My mother is understandably freaked out which is the main reason for asking. Dad is quite stoic, 66 and in ok shape (non-smoker, light drinker and retired). What sort of effect is this likely to have on his diet and digestive system? Does anyone know? Googling gives me a lot of medical info that I find a bit impenetrable. Maybe I'm googling the wrong words? I'm not looking for sympathy just some advice on what to expect or where to get information in easy to understand terms. Thanks everyone.
My father had this happen--it was pitched as esophageal adenocarcinoma, but, long story short, no stomach now.
A few effects, almost none of which were mentioned in any significant form before the surgery (although they are probably better than, say, dying), and which may or may not be typical of a well-done surgery:
The place where the remains were connected was very small, and had to be surgically dilated every few months for a few years after the surgery--lots of small morsels getting stuck and generally causing misery in the weeks before dilations. He couldn't eat enough real food at once to maintain a healthy weight, and after a few weeks of drinking Ensure-type food-replacement shakes developed a virulent allergy to soy: this remains a problem, especially given soy's wide reach in processed food and ingredients. He obviously can't eat much at all at once, and needs to stick to foods which can be chewed very thoroughly--less-than-tender meats were a particular problem back in the dilation days. He can't drink carbonated things without letting them flatten a bit.
His lack of normal diet doesn't do wonders for his already-existing depressing morbid stoicism, either.
I'm sure I'm forgetting other effects, but in general living without a stomach is about as normal as you'd expect it to be (if, again, probably preferable to not living with a stomach. I hope someone can chime in with more positive anecdotes or science. Don't get me wrong, they got the cancer--even if he's usually too stubborn to admit, years and scans later, that he's beaten it--but it can definitely be a big adjustment to quality of life.
posted by deeaytch at 4:28 AM on January 27, 2010 [1 favorite]
A few effects, almost none of which were mentioned in any significant form before the surgery (although they are probably better than, say, dying), and which may or may not be typical of a well-done surgery:
The place where the remains were connected was very small, and had to be surgically dilated every few months for a few years after the surgery--lots of small morsels getting stuck and generally causing misery in the weeks before dilations. He couldn't eat enough real food at once to maintain a healthy weight, and after a few weeks of drinking Ensure-type food-replacement shakes developed a virulent allergy to soy: this remains a problem, especially given soy's wide reach in processed food and ingredients. He obviously can't eat much at all at once, and needs to stick to foods which can be chewed very thoroughly--less-than-tender meats were a particular problem back in the dilation days. He can't drink carbonated things without letting them flatten a bit.
His lack of normal diet doesn't do wonders for his already-existing depressing morbid stoicism, either.
I'm sure I'm forgetting other effects, but in general living without a stomach is about as normal as you'd expect it to be (if, again, probably preferable to not living with a stomach. I hope someone can chime in with more positive anecdotes or science. Don't get me wrong, they got the cancer--even if he's usually too stubborn to admit, years and scans later, that he's beaten it--but it can definitely be a big adjustment to quality of life.
posted by deeaytch at 4:28 AM on January 27, 2010 [1 favorite]
Here's the American Cancer Society's stomach cancer surgery overview. Key quote excerpt:
If you have a total gastrectomy, the surgeon will make a new "stomach" out of intestinal tissue. Usually the end of the esophagus is attached to part of the small intestine, and some extra intestine is also attached. This can make room for food to be stored before moving down the intestinal tract, and will allow you to eat some food before getting filled up. But people who have a total gastrectomy can only eat a small amount of food at a time. Because of this, they must eat more often.
posted by zippy at 4:37 AM on January 27, 2010 [1 favorite]
If you have a total gastrectomy, the surgeon will make a new "stomach" out of intestinal tissue. Usually the end of the esophagus is attached to part of the small intestine, and some extra intestine is also attached. This can make room for food to be stored before moving down the intestinal tract, and will allow you to eat some food before getting filled up. But people who have a total gastrectomy can only eat a small amount of food at a time. Because of this, they must eat more often.
posted by zippy at 4:37 AM on January 27, 2010 [1 favorite]
Response by poster: Thanks to Billegible, deeaytch and esp. zippy so far. Looks like the old man is having the total gastroectomy.
The surgeon is telling him that many of his patients make a "complete recovery" and can eat "practically normally within months". This sounds like surgeon-patient "there, there, not to worry" bullshit. I understand why they do that but I'm not buying it. I want to be as informed as possible to forewarn my sister of what the future may be like for mum and dad.
I would appreciate any more responses - no need to be 'positive' or sugar-coat anything. Information is power!
posted by evil_esto at 5:41 AM on January 27, 2010
The surgeon is telling him that many of his patients make a "complete recovery" and can eat "practically normally within months". This sounds like surgeon-patient "there, there, not to worry" bullshit. I understand why they do that but I'm not buying it. I want to be as informed as possible to forewarn my sister of what the future may be like for mum and dad.
I would appreciate any more responses - no need to be 'positive' or sugar-coat anything. Information is power!
posted by evil_esto at 5:41 AM on January 27, 2010
Here is a blog by a guy documenting his stomach-removal surgery and recovery. He is younger than your dad and had it done as a preventative measure because of a genetic predisposition. The blog has been dead for a while, but he's still working at his day job.
posted by cardboard at 6:38 AM on January 27, 2010
posted by cardboard at 6:38 AM on January 27, 2010
I know you're more looking for information, but umm...having a major organ removed I think warrants a second opinion from another physician who specializes in this area at a completely different medical institution. Of course, a second opinion may have already been had and if so, I apologize for intruding on the thread.
posted by zizzle at 7:07 AM on January 27, 2010
posted by zizzle at 7:07 AM on January 27, 2010
I would go here first for 3 weeks: hippocrates.org.
My mother just went with her uterine cancer for 6 weeks and its now in recession - she was also given an aggressive surgery recommendation but decided the cure was worse than the cause.
posted by zia at 7:11 AM on January 27, 2010
My mother just went with her uterine cancer for 6 weeks and its now in recession - she was also given an aggressive surgery recommendation but decided the cure was worse than the cause.
posted by zia at 7:11 AM on January 27, 2010
Best answer: My family has a gene mutation that causes undetectable stomach cancer; as such, everyone with the gene has to get their stomachs completely removed as a preventative measure.
I've known 6 people (all women) who have undergone this surgery, and 5 of them have thrived afterwards. One is still struggling, but this is due to lifestyle and diet and not taking care of herself (she's an alcoholic).
How much extra weight does your dad have on him? Most of my aunts were relatively overweight, which was extremely beneficial to this kind of surgery. One was a normal, healthy weight, and she still did great.
Diets have to change but not as drastically as you would think. Grease, carbs, and salt can be tough; protein is good. Raw vegetables can also be difficult. You've got to eat lots of little small meals all throughout the day. Also, they can't drink any liquids for 30 minutes before or after eating.
Keeping weight on can become a bit of a problem, but manageable.
I could write a whole lot more but am in class and should go pay attention.
I'm totally here to support you, and could maybe even get you in touch with one of my relatives who has been through this. Feel free to pm me.
posted by whalebreath at 7:58 AM on January 27, 2010 [1 favorite]
I've known 6 people (all women) who have undergone this surgery, and 5 of them have thrived afterwards. One is still struggling, but this is due to lifestyle and diet and not taking care of herself (she's an alcoholic).
How much extra weight does your dad have on him? Most of my aunts were relatively overweight, which was extremely beneficial to this kind of surgery. One was a normal, healthy weight, and she still did great.
Diets have to change but not as drastically as you would think. Grease, carbs, and salt can be tough; protein is good. Raw vegetables can also be difficult. You've got to eat lots of little small meals all throughout the day. Also, they can't drink any liquids for 30 minutes before or after eating.
Keeping weight on can become a bit of a problem, but manageable.
I could write a whole lot more but am in class and should go pay attention.
I'm totally here to support you, and could maybe even get you in touch with one of my relatives who has been through this. Feel free to pm me.
posted by whalebreath at 7:58 AM on January 27, 2010 [1 favorite]
My grandfather had this done. He died a year later, but that was because the cancer had moved to other organs, and at his age (73) he didn't want to undergo more aggressive treatment.
As I recall, he recovered quickly, and was eating normally - although smaller portions more often - I don't recall that he was restricted in what he could eat.
Naturally, everyone is different, and if you have concerns, I'd recommend a second opinion.
posted by Pogo_Fuzzybutt at 8:06 AM on January 27, 2010
As I recall, he recovered quickly, and was eating normally - although smaller portions more often - I don't recall that he was restricted in what he could eat.
Naturally, everyone is different, and if you have concerns, I'd recommend a second opinion.
posted by Pogo_Fuzzybutt at 8:06 AM on January 27, 2010
Best answer: I'm sorry to have to tell you that stomach cancer can be pretty nasty. The 5-year survival rate is somewhere around 25% - that is only about 25% of people will still be alive 5 years after their diagnosis.
The wikipedia article on stomach cancer is actually pretty good - feel free to come back here if anything is unclear, and I'll do my best to explain it. Some of the key points:
- Having part or all of the stomach removed only completely cures the person about 40% of the time, especially when there are metastases (when the cancer has spread to other parts of the body). That said, they're often palliative, which means that the surgery may prolong life and decrease the severity of his symptoms.
- Chemo and drugs are also particularly ineffective against stomach cancers. They may shrink the tumor and prolong life, but are unlikely to cure it completely.
That said, if the surgeon believes that they caught it early and it's still small, those are both positive signs.
As for the surgery, he's having what is called a Gastrectomy. There's about a 98% chance of getting through the surgery without deadly complications, so that's good. Searching on that term will bring you lots more information about what he can expect after the surgery.
Best wishes to you both.
posted by chrisamiller at 8:30 AM on January 27, 2010 [1 favorite]
The wikipedia article on stomach cancer is actually pretty good - feel free to come back here if anything is unclear, and I'll do my best to explain it. Some of the key points:
- Having part or all of the stomach removed only completely cures the person about 40% of the time, especially when there are metastases (when the cancer has spread to other parts of the body). That said, they're often palliative, which means that the surgery may prolong life and decrease the severity of his symptoms.
- Chemo and drugs are also particularly ineffective against stomach cancers. They may shrink the tumor and prolong life, but are unlikely to cure it completely.
That said, if the surgeon believes that they caught it early and it's still small, those are both positive signs.
As for the surgery, he's having what is called a Gastrectomy. There's about a 98% chance of getting through the surgery without deadly complications, so that's good. Searching on that term will bring you lots more information about what he can expect after the surgery.
Best wishes to you both.
posted by chrisamiller at 8:30 AM on January 27, 2010 [1 favorite]
Here is an article from my local paper on a woman who has had her stomach removed because of her family's cancer history. Three or four members of her family have also had the surgery done. Here is an ABC News piece on them.
The short answer: yes, you can eat, although not without restrictions, but it's doable, and certainly preferable to the alternative. Stomach cancer is one of the nastiest cancers out there, so anything you can do to help your dad have a reasonably full and comfortable life is probably worth it. Good luck.
posted by Madamina at 9:56 AM on January 27, 2010
The short answer: yes, you can eat, although not without restrictions, but it's doable, and certainly preferable to the alternative. Stomach cancer is one of the nastiest cancers out there, so anything you can do to help your dad have a reasonably full and comfortable life is probably worth it. Good luck.
posted by Madamina at 9:56 AM on January 27, 2010
Response by poster: Great links and advice, thanks to everyone for your responses.
posted by evil_esto at 3:04 AM on January 29, 2010
posted by evil_esto at 3:04 AM on January 29, 2010
This thread is closed to new comments.
posted by Billegible at 3:35 AM on January 27, 2010 [2 favorites]