Gastrectomy - is it a good option?

toughone

My husband was diagnosed with stage 3c gastric cancer (linitis plastica) on October 15, 2010. He started chemo (ECF) immediately. Going into the third round though, it was determined that this cocktail wasn't working. The fluid in his abdomen (ascites) had increased and needed to be drained. 5 liters were drained out of him that day and 6 days later 2 more liters. The Oncologist ordered a new cocktail (Folfiri), and my husband started on this a week later. Fortunately, he could tell right away that this new medication was working. Three rounds later, he's been referred to a surgeon for a possible gastrectomy. We met with the surgeon last week, and he said that provided the endoscopy and laporascopy confirm that the cancer is in remission he is willing to do the surgery. However, the surgeon clarified that there are no studies available to prove that a gastrectomy will improve my husband's odds against recurrence. According to the surgeon, my husband is somewhat unique. Most people diagnosed with his stage of stomach cancer and getting ascites (pathology showed cancer cells in the fluid) in the abdomen, don't normally go into remission. So, there aren't any studies available today which can prove that the surgery will improve my husband's odds against recurrence. Right now, my husband is eating well, looks good, and feels good. This is a pretty intense surgery, and we aren't sure if it's worth the risk to have the surgery. Everything I read points to people who are hoping for a chance to have surgery. Is there information somewhere that shows the odds of recurrence are improved when surgery is an option? We are grateful that he has gotten to this point, but are very confused about whether surgery is really a good choice.

Ciaran

Their really aren't alot of
Their really aren't alot of studies, because your husband is one of the very few to go into remission at this stage of cancer. However from everything I have read, getting the stomach out is what everyone aims at with this kind of cancer. Even people diagnosed with benign tumors of the stomach are sometimes advised to get a partial or complete Gastrectomy.

Unfortunately I can't point you at any studies and nor can I advise you on this personally, but if my partner could have his stomach out, we would be doing it tomorrow. If my partner had any doubts about the surgery, then the question would be, what if he didn't have the surgery and then later the cancer came back and we no longer had the option of surgery? Would it be a regret we could live with?

toughone

Ciaran said:

Their really aren't alot of
Their really aren't alot of studies, because your husband is one of the very few to go into remission at this stage of cancer. However from everything I have read, getting the stomach out is what everyone aims at with this kind of cancer. Even people diagnosed with benign tumors of the stomach are sometimes advised to get a partial or complete Gastrectomy.

Unfortunately I can't point you at any studies and nor can I advise you on this personally, but if my partner could have his stomach out, we would be doing it tomorrow. If my partner had any doubts about the surgery, then the question would be, what if he didn't have the surgery and then later the cancer came back and we no longer had the option of surgery? Would it be a regret we could live with?

Good points
Thanks for your perspective. I do feel a little selfish even asking the question, because we do feel blessed that he has improved so much. It's just such a big question mark regarding whether or not the surgery really does any good. Would our regrets instead come as he struggles to recover from surgery with a compromized immune system, low weight (lost 40 pounds already and the surgeon said to expect another 10 - 20 and he started out on this journey slim), and struggles to maintain nutrition (that we've just overcome). As we too were hoping to be able to reach the surgery stage, I just never realized that it would be such a tough decision.

I've read some of your postings, and I'm sorry you have such struggles ahead with your partner. I'm blessed in that my husband wants to fight this with everything he has, so it is difficult for me to offer any words of advice. I know he has told me many times that he doesn't know how he would have gotten through this without me, and that means the world to me. So, I'm sure that your support will be appreciated at some point, too.

Ciaran

toughone said:

Good points
Thanks for your perspective. I do feel a little selfish even asking the question, because we do feel blessed that he has improved so much. It's just such a big question mark regarding whether or not the surgery really does any good. Would our regrets instead come as he struggles to recover from surgery with a compromized immune system, low weight (lost 40 pounds already and the surgeon said to expect another 10 - 20 and he started out on this journey slim), and struggles to maintain nutrition (that we've just overcome). As we too were hoping to be able to reach the surgery stage, I just never realized that it would be such a tough decision.

I've read some of your postings, and I'm sorry you have such struggles ahead with your partner. I'm blessed in that my husband wants to fight this with everything he has, so it is difficult for me to offer any words of advice. I know he has told me many times that he doesn't know how he would have gotten through this without me, and that means the world to me. So, I'm sure that your support will be appreciated at some point, too.

Hopeful!
Don't feel selfish. Stories like yours is what give's people like me hope.

honestly I am over the moon that your husband has this choice. I just wish I had more to offer you in the way of facts. I have spent the afternoon googling for you and unfortunately I'm not coming up with much in the way of facts for you. I phoned the MacMillan Trust (A uk cancer charity) and spoke to a special cancer nurse and she told me that basically the "cure" is normally the removal of the stomach, however their are no studies to back this up really,as your husband is one of the lucky few who get to the point of remission.

I'm going to phone my cousin tonight (who lives in japan), he may have access to some of the studies over there, where stomach cancer is much more common and may be able to translate the findings for me.

This is a massive life changing decision for you and your husband and we are all here for you, no matter what you choose.

Both choices have their risks and although it is a "good" place to be in, it is a very hard position to be in too.

I will keep researching for you and I will try and get hold of my cousin to see what he can come up with.

My previous message lacked the research I normally put in, as I was just so happy to see someone do so well and I'm desperate to have someone survive this horrible illness.

Good luck to you both and I will post again as soon as I find anything out which can be helpful at all.

Regards

C

toughone

Ciaran said:

Hopeful!
Don't feel selfish. Stories like yours is what give's people like me hope.

honestly I am over the moon that your husband has this choice. I just wish I had more to offer you in the way of facts. I have spent the afternoon googling for you and unfortunately I'm not coming up with much in the way of facts for you. I phoned the MacMillan Trust (A uk cancer charity) and spoke to a special cancer nurse and she told me that basically the "cure" is normally the removal of the stomach, however their are no studies to back this up really,as your husband is one of the lucky few who get to the point of remission.

I'm going to phone my cousin tonight (who lives in japan), he may have access to some of the studies over there, where stomach cancer is much more common and may be able to translate the findings for me.

This is a massive life changing decision for you and your husband and we are all here for you, no matter what you choose.

Both choices have their risks and although it is a "good" place to be in, it is a very hard position to be in too.

I will keep researching for you and I will try and get hold of my cousin to see what he can come up with.

My previous message lacked the research I normally put in, as I was just so happy to see someone do so well and I'm desperate to have someone survive this horrible illness.

Good luck to you both and I will post again as soon as I find anything out which can be helpful at all.

Regards

C

Update
I am very touched by all your efforts. My husband had an endoscopy on Monday. Following the test, the surgeon told us that if he didn't know beforehand that my husband had cancer, he wouldn't have known. Everything looked good--no sign of cancer. The surgeon put in his case notes that this was an, "absolutely incredible response" to the chemo. However, we got back the biopsy results today, and cancer cells were found on the samples. Although a little disappointing, it is still good news that the tumor responded to the chemo so well, and it makes the decision to operate or not rather straightforward. According to our Oncologist, the only way to get rid of the last of the resistant cancer cells is to remove the stomach. So, he had a round of chemo today, and the "final" one is scheduled for two weeks from today. After that, he'll have a 3 week "break" before the surgery which is tentatively scheduled for the week of March 14th. I know he can beat this, so I'm praying the surgery won't be as tough as it sounds.

neverquit

toughone said:

Update
I am very touched by all your efforts. My husband had an endoscopy on Monday. Following the test, the surgeon told us that if he didn't know beforehand that my husband had cancer, he wouldn't have known. Everything looked good--no sign of cancer. The surgeon put in his case notes that this was an, "absolutely incredible response" to the chemo. However, we got back the biopsy results today, and cancer cells were found on the samples. Although a little disappointing, it is still good news that the tumor responded to the chemo so well, and it makes the decision to operate or not rather straightforward. According to our Oncologist, the only way to get rid of the last of the resistant cancer cells is to remove the stomach. So, he had a round of chemo today, and the "final" one is scheduled for two weeks from today. After that, he'll have a 3 week "break" before the surgery which is tentatively scheduled for the week of March 14th. I know he can beat this, so I'm praying the surgery won't be as tough as it sounds.

I am very glad to hear that
I am very glad to hear that your husband has gotten good results from the chemo. I hope and pray that he beats this beast and that stomach cancer does not claim another victory. My prayers are with you both.

Lilllly

toughone said:

Update
I am very touched by all your efforts. My husband had an endoscopy on Monday. Following the test, the surgeon told us that if he didn't know beforehand that my husband had cancer, he wouldn't have known. Everything looked good--no sign of cancer. The surgeon put in his case notes that this was an, "absolutely incredible response" to the chemo. However, we got back the biopsy results today, and cancer cells were found on the samples. Although a little disappointing, it is still good news that the tumor responded to the chemo so well, and it makes the decision to operate or not rather straightforward. According to our Oncologist, the only way to get rid of the last of the resistant cancer cells is to remove the stomach. So, he had a round of chemo today, and the "final" one is scheduled for two weeks from today. After that, he'll have a 3 week "break" before the surgery which is tentatively scheduled for the week of March 14th. I know he can beat this, so I'm praying the surgery won't be as tough as it sounds.

Your family is in my
Your family is in my thoughts, this is a difficult thing to weigh. That is great that he is responding so well to the chemo. My dad had a total gastrectomy and it was a very difficult surgery to recovery from, but he recovered from his. He passed away just last month, but the surgery put him into a remission for a few months, and he went on to have a year and a half after the surgery, and had he not had it, we would not have even had close.

Our surgeon was top of the line for our area, and she told us that the best chance for curative and survival length is a total gastrectomy. It is a matter of weighing whether it is worth it or not with most, as it is quite major. I hope everything is going well on your end, prayers and thoughts sent your way.

Chanel79

toughone said:

Update
I am very touched by all your efforts. My husband had an endoscopy on Monday. Following the test, the surgeon told us that if he didn't know beforehand that my husband had cancer, he wouldn't have known. Everything looked good--no sign of cancer. The surgeon put in his case notes that this was an, "absolutely incredible response" to the chemo. However, we got back the biopsy results today, and cancer cells were found on the samples. Although a little disappointing, it is still good news that the tumor responded to the chemo so well, and it makes the decision to operate or not rather straightforward. According to our Oncologist, the only way to get rid of the last of the resistant cancer cells is to remove the stomach. So, he had a round of chemo today, and the "final" one is scheduled for two weeks from today. After that, he'll have a 3 week "break" before the surgery which is tentatively scheduled for the week of March 14th. I know he can beat this, so I'm praying the surgery won't be as tough as it sounds.

Surgery
Hi There,
Firstly I am keeping you and your husband in my thoughts and prayers. What a blessing his response to that particular cocktail was! Wow!
Stomach cancer in it's later stages are very aggressive as we are all aware for those of us who are familiar. I am not a medical expert, but I have stood in battle by my Father's side and thought I'd share my point of view on the surgery option.
In early 2008 my Father was diagnosed with Stage IV very aggressive stomach cancer which had spread to lymph nodes, and he had a tumor the size of a plum in his stomach along the side of the wall which was attached to many other organs. A total gastrectomy indeed is a more aggressive treatment form, but he wouldnt have had it any other way and I'd have to agree. He was given a 15% chance of surviving a year after but went for it anyway because he wanted to do all he could to stay alive and figured what did he have to lose? He surpassed any timelines that the doctors had given him. He was cancer free for a period of time after his surgery (he did do chemo and radiation prior to the surgery and after). It came back a few months later, and he was back on chemo and radiation treatments. We were blessed to have his presence for 3 extra years that we were told we would not even have back in 2008. I am from Canada, and am thankful for a wonderful medical team for Dad. They were absolutely amazing. I am a bit sad to see that there are not more resources for stomach cancer survivors, and for those who have gone through the surgery. Nutritionists will tell you to eat small amounts several times a day (grazing), and what you should and shouldnt eat, but from my research speaking with others and from reading others experiences, it differs from person to person what they can and cannot eat, etc. My Dad was able to continue to eat the foods he enjoyed, a few minor things may have upset his tummy here and there but its a change. Just have to eat slower, and smaller portions. My Father had no complications other than the odd case of "dumping syndrome" here and there if he ate too fast or too much food at once. It was all worth it though, he was very exhausted a lot after the surgery as well. The Doctor said that after the surgery and for a long period of time after surgery a person will feel more fatigued a lot easier than lifestyle prior, but that being said the treatments are to be considered in that equation as well. If you have any questions at all please feel free to private message me, I'm glad to help. I wish that more funding would go into this particular cause, as there are a lot of people out there that need resources specific to this lifestyle change after surgery etc. I wish you all of the best and please dont hesitate to get in touch with me. Stay strong!! He can do this, just believe!! (I know you do) It's natural to feel the feelings you are feeling, but he is in good hands!! God bless xo