gastrectomy

CMC
CMC Member Posts: 5
edited March 2014 in Stomach Cancer #1
Hi My Mom ( 79 years young) was diagnosed with gastric cancer in Feb, has since undergone 4 chemo treatments and both the Oncologist and Surgeon have said she has responded amazingly to the chemo so they are recommending a total gastrectomy. They really think she has a great chance of getting rid of the cancer. My mom is very worried about undergoing this big surgery.
She was hoping someone could tell her what life is really like after this procedure

How long was the recovery?
What does it feel like to eat if you have no stomach ?
How bad is the diarrhea ?
Is there anything that you use to do that you cannot do anymore ? like take dogs on a walk, go shopping, .....she loves to volunteer at the hospital a couple hrs a week so do you regain your energy enough to go out and about ?

Are you glad you did the surgery? would you do it again ?
Anything you are willing to share with us would no doubt be helpful and appreciated !!
Thank you !!!

Comments

  • Tomissimo
    Tomissimo Member Posts: 37
    Gastrectomy Recovery
    I'll preface this that obviously we all have different treatments and recovery. I'll relate the information that myself and friend I made from treatments went through. Also note that I was 31 at the time of treatment and he was 74.

    How long was the recovery?
    - hard to answer. I'm two years out nearly and I still feel I am recovering to a degree. But my Dr's told me the usual is about 10 to 14 months. A year or so give or take a couple months. It wasn't until about 18 months that I started to feel decent again though. But they also said I was at an extreme low end of tolerating the eating again.


    What does it feel like to eat if you have no stomach ?
    - In time there does not become much of a difference. The biggest thing to get used to is to learn what 'hunger' is. Hunger is more of an empty feeling that you recognize that you need to eat something. I think it's mostly just an air build up in the intestines. But use that to recognize when we are hungry. Though the clock is the biggest rule for eating. Some things are better, like I do not have acid indigestion as much since there is just bile and no more stomach acid. But have to be wary of reflux more as there is not upper sphincter to close the stomach from the esophagus anymore.



    How bad is the diarrhea ?
    - When I first started eating again ( the J tube goes into the intestines and I had mine for 6 weeks post surgery ) I had horrible problems with 'dumping syndrome'. It does get better with time. That is certain, but for me that was the worst part of recovery.


    Is there anything that you use to do that you cannot do anymore ? like take dogs on a walk, go shopping, .....she loves to volunteer at the hospital a couple hrs a week so do you regain your energy enough to go out and about ?
    - It is strongly recommended to take walks and move as much as possible. Of course long walks will have to be built up to. Starting out it is just walking around the house, and then eventually up and down a drive, and growing longer as health warrants.


    Are you glad you did the surgery? would you do it again ?
    - That is a hard question. Knowing it was life and death yes it was worth it. Hearing people have bypass surgeries or other stomach surgeries I think they are insane to get it. If I was told I had to undergo it again... I'm not sure. I probably would but I would definitely think about it. I'm sure I would have it again for my family but it is certainly not something I would want anyone to have to experience.

    That being said if your mother does opt for surgery I hope it works out for her. As I mentioned earlier myself and someone I met at the time had the same procedure done:

    I was 31, 4 lymph nodes infected and I am still going 2 years later.

    The friend I made was 74 and he passed on about 9 or 10 months after surgery. He also has 12 lymph nodes infected. So he was in more advanced progression of the disease.

    There are other people on these boards as well that are older and still surviving, so I am not trying to give a doom and gloom scenario. Your mother is upbeat the surgery may work for her and I hope it does. I wish the best for anyone having to deal with cancer at anytime. It is a horrible disease for us, and for you and our caretakers to deal with.

    I wish you, your mother and your family the best and the hopes for successful recovery.

    -- Tom
  • Paul_Buzza
    Paul_Buzza Member Posts: 4
    gastrectomy experience
    I'm a 62-year-old diagnosed with stomach cancer in January, 2009. I had three chemo treatments prior to surgery and a total gastrectomy in early May. I just last week started on my three post-surgery chemo treatments, so I can't tell you much about long term. With that background, let me tell you what I've found.

    How long was the recovery?
    I'm still learning how/what I can eat and what I can't. Not much trouble with dumping syndrome if I'm careful to lie down after eating and eating only small meals. I've also stayed with an anti-dumping diet as much as possible (some research on the web will show you many sites discussing dumping and diet). The only food that I've tried and had trouble with is vinegar--as in vinegar and oil dressing--and some other tangy foods like lemon. I've stayed away from sugar completely.

    What does it feel like to eat if you have no stomach ?
    I tend to get full very quickly, so must eat small meals. 1/4 of a sandwich is probably the most I can eat at one time. So, I just eat my 1/4, set the rest aside, and eat it in a couple of hours. As Tom said, the most important thing for me is to watch the clock. Due to the chemo I'm on now, I frequently have no appetite at all, but must eat every two hours. I have found that "hunger" is a definitely uncomfortable feeling; I looked up the word "pang" and it perfectly describes what I feel. I've found that I frequently have to have a snack every two hours overnight as well. A few pretzels will do. I also found that the Glucerna bars are a good snack, since they're designed with little sugar for diabetics.

    How bad is the diarrhea ?
    I found at first that I was bouncing between diarrhea and constipation on about a 7-day cycle. I finally started taking Reglan three times a day, and it seems to have settled my system down pretty well.

    Is there anything that you use to do that you cannot do anymore ?
    I'll have to recover more before I get back into golf, but expect to play next summer. Post-surgery took me about four weeks to get up to two 15-minute walks daily. This past week I've been back to work about 3/4 time, but still need a nap mid-day. The lack of energy, however, is due more to the round of chemo currently underway.

    Are you glad you did the surgery? would you do it again ?
    Without question!! If you've done some research, you'll see that survival rates for stomach cancer are among the worst. However, that's because most are not found until they've spread to other organs (Stage IV). I had some pain that led to the diagnosis at Stage 2B with the stomach, esophagus and one lymph node involved. I had "excellent" results from the first chemo, but the surgery still found cancer in the original tumor and in the lymph node. I believe that either of those would have spread without the surgery. I fully expect to be fully cured at the end of this chemo-surgery-chemo process.

    I hope this helps a little. I would add that one of the things that has helped me keep up my spirits is the use of CaringBridge.org. It's a site that let me build my own website where I can post journal entries to keep my friends and family up to date on what's going on with me. Don't be afraid to ask for thoughts and prayers--they help. Mine will be with you and your mother.
  • CMC
    CMC Member Posts: 5

    gastrectomy experience
    I'm a 62-year-old diagnosed with stomach cancer in January, 2009. I had three chemo treatments prior to surgery and a total gastrectomy in early May. I just last week started on my three post-surgery chemo treatments, so I can't tell you much about long term. With that background, let me tell you what I've found.

    How long was the recovery?
    I'm still learning how/what I can eat and what I can't. Not much trouble with dumping syndrome if I'm careful to lie down after eating and eating only small meals. I've also stayed with an anti-dumping diet as much as possible (some research on the web will show you many sites discussing dumping and diet). The only food that I've tried and had trouble with is vinegar--as in vinegar and oil dressing--and some other tangy foods like lemon. I've stayed away from sugar completely.

    What does it feel like to eat if you have no stomach ?
    I tend to get full very quickly, so must eat small meals. 1/4 of a sandwich is probably the most I can eat at one time. So, I just eat my 1/4, set the rest aside, and eat it in a couple of hours. As Tom said, the most important thing for me is to watch the clock. Due to the chemo I'm on now, I frequently have no appetite at all, but must eat every two hours. I have found that "hunger" is a definitely uncomfortable feeling; I looked up the word "pang" and it perfectly describes what I feel. I've found that I frequently have to have a snack every two hours overnight as well. A few pretzels will do. I also found that the Glucerna bars are a good snack, since they're designed with little sugar for diabetics.

    How bad is the diarrhea ?
    I found at first that I was bouncing between diarrhea and constipation on about a 7-day cycle. I finally started taking Reglan three times a day, and it seems to have settled my system down pretty well.

    Is there anything that you use to do that you cannot do anymore ?
    I'll have to recover more before I get back into golf, but expect to play next summer. Post-surgery took me about four weeks to get up to two 15-minute walks daily. This past week I've been back to work about 3/4 time, but still need a nap mid-day. The lack of energy, however, is due more to the round of chemo currently underway.

    Are you glad you did the surgery? would you do it again ?
    Without question!! If you've done some research, you'll see that survival rates for stomach cancer are among the worst. However, that's because most are not found until they've spread to other organs (Stage IV). I had some pain that led to the diagnosis at Stage 2B with the stomach, esophagus and one lymph node involved. I had "excellent" results from the first chemo, but the surgery still found cancer in the original tumor and in the lymph node. I believe that either of those would have spread without the surgery. I fully expect to be fully cured at the end of this chemo-surgery-chemo process.

    I hope this helps a little. I would add that one of the things that has helped me keep up my spirits is the use of CaringBridge.org. It's a site that let me build my own website where I can post journal entries to keep my friends and family up to date on what's going on with me. Don't be afraid to ask for thoughts and prayers--they help. Mine will be with you and your mother.

    gastrectomy experience
    Thank you very much for taking the time to share your experience
    Your candid answers have helped more than you can imagine
    We will check out CaringBridge.org as you suggested
    Your thoughts and prayers are most appreciated and are a source of comfort
    Take good care
    CMC
  • CMC
    CMC Member Posts: 5
    Tomissimo said:

    Gastrectomy Recovery
    I'll preface this that obviously we all have different treatments and recovery. I'll relate the information that myself and friend I made from treatments went through. Also note that I was 31 at the time of treatment and he was 74.

    How long was the recovery?
    - hard to answer. I'm two years out nearly and I still feel I am recovering to a degree. But my Dr's told me the usual is about 10 to 14 months. A year or so give or take a couple months. It wasn't until about 18 months that I started to feel decent again though. But they also said I was at an extreme low end of tolerating the eating again.


    What does it feel like to eat if you have no stomach ?
    - In time there does not become much of a difference. The biggest thing to get used to is to learn what 'hunger' is. Hunger is more of an empty feeling that you recognize that you need to eat something. I think it's mostly just an air build up in the intestines. But use that to recognize when we are hungry. Though the clock is the biggest rule for eating. Some things are better, like I do not have acid indigestion as much since there is just bile and no more stomach acid. But have to be wary of reflux more as there is not upper sphincter to close the stomach from the esophagus anymore.



    How bad is the diarrhea ?
    - When I first started eating again ( the J tube goes into the intestines and I had mine for 6 weeks post surgery ) I had horrible problems with 'dumping syndrome'. It does get better with time. That is certain, but for me that was the worst part of recovery.


    Is there anything that you use to do that you cannot do anymore ? like take dogs on a walk, go shopping, .....she loves to volunteer at the hospital a couple hrs a week so do you regain your energy enough to go out and about ?
    - It is strongly recommended to take walks and move as much as possible. Of course long walks will have to be built up to. Starting out it is just walking around the house, and then eventually up and down a drive, and growing longer as health warrants.


    Are you glad you did the surgery? would you do it again ?
    - That is a hard question. Knowing it was life and death yes it was worth it. Hearing people have bypass surgeries or other stomach surgeries I think they are insane to get it. If I was told I had to undergo it again... I'm not sure. I probably would but I would definitely think about it. I'm sure I would have it again for my family but it is certainly not something I would want anyone to have to experience.

    That being said if your mother does opt for surgery I hope it works out for her. As I mentioned earlier myself and someone I met at the time had the same procedure done:

    I was 31, 4 lymph nodes infected and I am still going 2 years later.

    The friend I made was 74 and he passed on about 9 or 10 months after surgery. He also has 12 lymph nodes infected. So he was in more advanced progression of the disease.

    There are other people on these boards as well that are older and still surviving, so I am not trying to give a doom and gloom scenario. Your mother is upbeat the surgery may work for her and I hope it does. I wish the best for anyone having to deal with cancer at anytime. It is a horrible disease for us, and for you and our caretakers to deal with.

    I wish you, your mother and your family the best and the hopes for successful recovery.

    -- Tom

    gastrectomy recovery
    Thank you Tom for your quick and thorough response
    Your answers to all of our questions have helped us begin to make sense of all this
    Thank you for caring. It is truly amazing how people can connect and gain a sense of support from one another through this process.
    Take good care
    CMC
  • MareBear
    MareBear Member Posts: 1
    Father had total gastrectomy
    My Father was diagnosed in Jan, 09 with gastric cancer stage 3. We actually did not know the stage until we requested his medical records. Anyhow, he was 72 years old and was to have surgery to remove part of stomach but then they decided to do a total gastrectomy. He actually was not in the hospital all that long, but when asked what to eat as far as a diet
    goes, the Dr's really had no specific answer. They just said "eat normal and see what bothers you and what doesn't". That should of been a red flag but........we put our trust in the Dr's. I STRONGLY BELIEVE THAT MY FATHER WOULD BE ALIVE TODAY IF WE WERE SCHOOLED ON A SPECIFIC DIET. My father was miserable from the end of May (when his surgery was) up until he passed Sept 1, 2009. He could not keep nothing down, sometimes the poor guy couldn't even keep water down. I was horrified when he would break out in a sweat and have to physically throw himself on the floor and just cry due to his pain he was having. We kept telling Dr's and they were like Hmmmmmmm......lets do more tests. I forgot to mention that he was on chemo before the surgery then again after. His frail body could not handle the chemo cocktail at first and his heart began to be affected. Eventually, they found the right dose. Out of 25 lymph nodes, 10 were cancer. He never felt the same after having surgery and up until he passed he said " I WISH I NEVER WOULD OF HAD THIS DAMN SURGERY". Dad ended up in hospital numerous times due to complications from surgery. He had lesions that were bleeding internally causing him to lose 5 pints of blood. Bowel obstruction, and the last surgery he had he basically never came out of. They were to "explore" and see what was going on for his constant pain and constant vomitting. After surgery he went immediately to ICU where he had a massive heart attack. Forgot to mention that while in hospital he got pneumonia as well. Come to find out, he had that for 3 days and he was vomitting as he was being wheeled into 2cnd surgery. THEY STILL OPERATED AND HE BASICALLY SUFFOCATED DUE TO HIM VOMITTING AND THEY SHOULD OF TREATED THE PNEUMONIA
    FIRST. This is a difficult thing to write when you want answers and advice but it is a HARD RECOVERY. PLEASE RESEARCH FOOD/DIET because I believe that would of kept Dad out of the hospitals and could of lasted a bit longer. He left behind a wife of almost 49 yrs, 5 children, 7 grandchildren and a very successful business. He went too fast and unexpected. Please just research with your doctor and keep investigating on these boards. I am new to this site so perhaps your decision is made and all went well. I do not think it is a BAD thing, just research your decision. I would love to discuss further. I find this therapy for my recent grief. Best of luck and do not hesitate to ask questions. God Bless.

    RIP John Balsamo 1936-2009
  • vijendrasnv
    vijendrasnv Member Posts: 15
    MareBear said:

    Father had total gastrectomy
    My Father was diagnosed in Jan, 09 with gastric cancer stage 3. We actually did not know the stage until we requested his medical records. Anyhow, he was 72 years old and was to have surgery to remove part of stomach but then they decided to do a total gastrectomy. He actually was not in the hospital all that long, but when asked what to eat as far as a diet
    goes, the Dr's really had no specific answer. They just said "eat normal and see what bothers you and what doesn't". That should of been a red flag but........we put our trust in the Dr's. I STRONGLY BELIEVE THAT MY FATHER WOULD BE ALIVE TODAY IF WE WERE SCHOOLED ON A SPECIFIC DIET. My father was miserable from the end of May (when his surgery was) up until he passed Sept 1, 2009. He could not keep nothing down, sometimes the poor guy couldn't even keep water down. I was horrified when he would break out in a sweat and have to physically throw himself on the floor and just cry due to his pain he was having. We kept telling Dr's and they were like Hmmmmmmm......lets do more tests. I forgot to mention that he was on chemo before the surgery then again after. His frail body could not handle the chemo cocktail at first and his heart began to be affected. Eventually, they found the right dose. Out of 25 lymph nodes, 10 were cancer. He never felt the same after having surgery and up until he passed he said " I WISH I NEVER WOULD OF HAD THIS DAMN SURGERY". Dad ended up in hospital numerous times due to complications from surgery. He had lesions that were bleeding internally causing him to lose 5 pints of blood. Bowel obstruction, and the last surgery he had he basically never came out of. They were to "explore" and see what was going on for his constant pain and constant vomitting. After surgery he went immediately to ICU where he had a massive heart attack. Forgot to mention that while in hospital he got pneumonia as well. Come to find out, he had that for 3 days and he was vomitting as he was being wheeled into 2cnd surgery. THEY STILL OPERATED AND HE BASICALLY SUFFOCATED DUE TO HIM VOMITTING AND THEY SHOULD OF TREATED THE PNEUMONIA
    FIRST. This is a difficult thing to write when you want answers and advice but it is a HARD RECOVERY. PLEASE RESEARCH FOOD/DIET because I believe that would of kept Dad out of the hospitals and could of lasted a bit longer. He left behind a wife of almost 49 yrs, 5 children, 7 grandchildren and a very successful business. He went too fast and unexpected. Please just research with your doctor and keep investigating on these boards. I am new to this site so perhaps your decision is made and all went well. I do not think it is a BAD thing, just research your decision. I would love to discuss further. I find this therapy for my recent grief. Best of luck and do not hesitate to ask questions. God Bless.

    RIP John Balsamo 1936-2009

    Hi,
    There are various

    Hi,

    There are various symptoms of this problem called as mentioned in earlier posts. So don’t start the treatment suddenly, recognize the symptoms, checkup and then proper treatment. Symptoms are mentioned above so no need to explain again!!!!!

    Thanks