Total Gastrectomy

Surgery
I`m having the same surgery in 2 weeks and would like to know more about it were you able to go back to work or did you go on disability? I heard both sides from friends saying the guys they know were unable to return to regular duty at work anything you can can give me about what to expect would be appreciated

lizy74 said:

You gave me hopes
Hi Lilly,

I am not even sure how I ended up reading and writing here.

I was reading your posting and I saw my father's case in your father's. We found out two months ago that my father has gastric cancer. In the beginning we thought to be stage 2, and we wanted to take action as soon as possible. We haven't done to many tests as we do not believe in our doctors( Romania) and we took him to a Hospital in Germany (Homburg).Here, they have done only some blood tests and the results came so bad and confirmed cancer 100%. Within a week he already had the fist surgery, removing the stomach, gallblader and 74 lymph nodes. For this clinic this was the biggest surgery (the biggest before was removing 38 lymph nodes).

Unfortunately, he is still in the hospital in Germany after 6 weeks and 5 surgeries. After the first one he was fine, recovering very well. But as you father mine is diabetic, smoker for 16 years and the worst he has Hepatitis C. After the first surgery like every 4 days he was reopen for 3 times...the anastomoza was fine but every time he had like a small hole, leakage from the intestine, duodenum...After so many surgeries and anesthesia his kidneys failed and he needed dialysis, then his lungs failed, he needed blood transfusions, he was intunbated... After 5 weeks in the hospital at the intevise therapy and 4 surgeries he was finally recovering until yesterday. He had water on the lungs, one was completely removing during the last 3 weeks, but yesterday they made a puncture for the other lung where there was not too much water.

As I said until yesterday he was recovering very slowly but going in the good direction. He was eating, his fever was gone and Dr. estimated to send him home next weekend. Yesterday we think they made a mistake and this costs us a lot. Dr. said to remove 500ml water from his lung but they removed 2l. He started to have pain all of a sudden, the kidneys failed and all the water was going out through his skin...after hours of pain he had a hemorrhage in the lungs in about 7 hours, doctors decided to do a surgery to see what's going on with the lung. This was his 5th surgery with general anesthesia in 6 weeks. He is again at the intensive therapy in a very bad condition and dr. admitted first they should have started with the first surgery and second they don’t know what to do from here. They said this case is too difficult for them.

I cannot believe it! We went to Germany as they are known to be good, they encourage us with having a good surgery, of continuing with an easy chemotherapy and in the end they said there is no point of chemo as this is the last stage and now they say they shouldn't have done the surgery at all.

Would it be possible for you to give me names of the Clinic and doctors in Canada who made the surgery for your dad? They were telling us that here in US, Canada, UK nobody would have done such a big surgery.

We lost all our hopes and we are wondering if we can take him alive back home to Romania. Now reading your message I have more faith and I hope he would be at least able to go home...

Would you please send me the name of the hospital in Canada? And also if you have any dr. names?

Best regards and I look forward to receiving your answer.

Eliza

father newly diagnosed
hi lizy 74 my name is kathy my father is 77 and is diagnosed with stage 1 stomach cancer he scheduled 4 a total gastrectomy on sept 16th i seen your post about your father and wanted to know how old your father is im sorry that your dad has had a very hard time with this cancer but keep the faith that he s gonna come out of this im very scared about this whole thing but the doctors say he can with stand the surgery but its the after math that im very worried about hes never smoked he used to drink alot before but quit in 2005 due to him haveing a quaddrouple bypass which he recoved great from and he was 73 at the time thank god but this cancer scares me i just dont want them to open him up and find thats its in a more advanced stage than 1 just keep the faith about bringing your dad home alive look forward to hearing from u god bless kathy

kmagallanez said:

father newly diagnosed
hi lizy 74 my name is kathy my father is 77 and is diagnosed with stage 1 stomach cancer he scheduled 4 a total gastrectomy on sept 16th i seen your post about your father and wanted to know how old your father is im sorry that your dad has had a very hard time with this cancer but keep the faith that he s gonna come out of this im very scared about this whole thing but the doctors say he can with stand the surgery but its the after math that im very worried about hes never smoked he used to drink alot before but quit in 2005 due to him haveing a quaddrouple bypass which he recoved great from and he was 73 at the time thank god but this cancer scares me i just dont want them to open him up and find thats its in a more advanced stage than 1 just keep the faith about bringing your dad home alive look forward to hearing from u god bless kathy

sorry for my late reply
Hello Kmagallanez,

After 3 month since I have written on this forum I decided to enter back and see how are you all doing.

I hope your father's surgery went well and he is recovering fast.

The second day I wrote on this forum, I was called to go immediately to Romania if I want to see my father for the last time alive.

He past away 6 weeks after the surgery and we can consider he died in the hospital. He was only 52 years old, going to Homburg,Germany with all his faith in the most famous doctor, Prof. Dr. Martin Schilling.

Going to Germany was the biggest mistake ever. He stayed in the hospital 6 weeks, having 5 surgeries...After one month when my father was recovering and the dr. told me he would be fine, I came back to US...After two weeks his situation became really bad and we had to transport him immediatly to Romania so he could die in our country. We managed to find right away a medical plane to take him back home...The flight and the entire transfer from Homburg, Gemrnay to a hospital in Romania was a nightmare. He couldn't breath at all and dr. decided to intubate him...Since this moment he was never conscious.

After they opened him and removed his stomach, gall and 74 lymph nodes...the cancer spread everywhere...When they opened him they said all the organs were ok, without methastasis...Of course, when you remove 74 lymph nodes this is definately stage 4. Within 6 weeks the lymph with cancer cells spread out everywhere but the lungs were the most affected.

In Germany the doctors never told us what was hapenning and made us stay over there until the end...First day when we arrived in Romania dr. took a tomography and told us he had only 1,2 days to live as the lymph flooded his lungs and that's way he was not able to breathe anymore. They were right! After two days kept alive artificially he died.

Doctors cannot do miracles! They can try to help and that's all they can do. We don't blame the german Dr. for what happened but I would never recommend anybody to go to this clinic.

They made only a blood test to confirm the tumor markers and that was all; no further investigation. 2 days after he had the surgery...which we think it was an experiment. Everything went completely wrong from the beginning and every 3 days they had to reopen him..and after the 4th surgery the cut wouldn't close anymore.

I saw my dad before surgery perfectly "fine", you couldn't say he was a sick person...and after 6 weeks he was dead... The best dicision at that time for dr. would have been to close him as he was...and he would have probably lived for 3-6 more months...

We can run to the best doctors, spend all our money, do everything...Is somebody UP there needs us...we can't do anything...

I am 27 years old and another dr. from that clinic who took care of my dad advised me to check myself every year after I turn 30. Since everybody in my family died of cancer he advised me to be very careful and to check myself...

I hope dr. and scientists will discover the cure for this lousy illness soon so many lives can be saved.

I wish you all faith, courage and strenght to fight with this illness or to support your families and friends. No matter how hard is to live with this or watch people sick we all need to fight. There are survivors so never lose your faith!

All the best,

Eliza

j3sr said:

Total Gastrectomy
Hi,
Even I had total gastrectomy for stomach cancer.Now by God's grace doing well and able to take almost all kind of food items in average amounts.I am 25 years old from India and now searching a job.Its been more than 1.5 year after my surgery.Had 3 chemothrappy before and after surgery.So totally 6 chemothrappy.I had a job before my treatment started and had to leave and resigned.Now really longing for a job.My parents are not willing to send me for a job, but I am confident mentally and physically.Just thing like a normal human being.Try to eat food which you like and feel like eating at that moment.Do not ever think you have a disability.Our mental decision gives strong support to our life.So do not think about our body.Mind is important.Everything is possible for God.Will surely remember you all in my prayers.Pray for me too.Thanks.

How long?
My Friend -

First - I wil pray for you - and you will get that job and do well - go for it ! But please - this is a life lesson for me - and perhaps you can learn from it - PLEASE find a job that you absolutely love very much - life it too short for anything else -



Can you help me --

This is new - was at the surgeon today -- I was knocked down a bit today - he said "if it has not spread (they have to confirm that a spot on my liver is not a problem)--if it has not spread -- he said he will have to remove the entire stomach -

I have a job --(I am 60) but lots of people depend on me -- how long should I plan on being out of the game? -- assuming the surgery - and recovery - where will this take me and how long -- you have been through it --

Thanks for the help


DJB

survivor2009 said:

I have fantastic doctors in the United States
Hi, my name is Dana. I was diagnosed with stomach cancer in august of 2008 and had surgery that same month. They removed my entire stomach, spleen and several lymph nodes in one large mass. The fact that it was one large mass was my biggest benefit. That way any pieces that may fall on to other areas was limited.
I went through chemo and radiation through April 2009. In July 2009 I was diagnosed as being in remission. I have a tpn (feeding tube directly in to intestine) to help me work on my weight. I have made it up to 128 lbs which is awesome. Once I reach my goal for my height I will be able to try to maintain it without taking in food at night. Once I can maintain it then I will have the tpn removed.

I wanted to tell you this because my surgical doctor is extremely good at what he does.
I don't know if you would be willing or even could but I want to pass along his information.

Allegheny General Hospital
Pittsburgh, PA (USA)

Dr Donald Atkinson

Office Locations:
Allegheny General Hospital
420 East North Avenue
Suite 304
Pittsburgh, PA 15212
Phone: (412) 359-4068
Fax: (412) 359-6732

Good Luck and God Bless!
Dana

I wondered how you were doing Survivor2009
My mother has the same cancer that you had, and has undergone what sounds like the same treatment as you. Her surgery was about 7 weeks ago, though we had lots of complications and have only been eating food for 10 days now. She is very discouraged. What she finds the most disappointing is how food doesn't taste right and even the texture of food is off. Is this something that you experienced? How long did it last? I've told her about the things I've read and that this just a phase that will pass, and she asks to hear it over and over, so I guess its helping. I hope to hear you are doing well and was encouraged to hear that you have gained weight, my mom is down to 99lbs at 5'8". We were told she wouldn't gain weight after the surgery. Also, did you get a lot of gas while using the feeding tube? We're struggling with that, and you can hear the gas in there just bubbling away. Any advice is appreciated, thank you!
Paige

DJB said:

How long?
My Friend -

First - I wil pray for you - and you will get that job and do well - go for it ! But please - this is a life lesson for me - and perhaps you can learn from it - PLEASE find a job that you absolutely love very much - life it too short for anything else -



Can you help me --

This is new - was at the surgeon today -- I was knocked down a bit today - he said "if it has not spread (they have to confirm that a spot on my liver is not a problem)--if it has not spread -- he said he will have to remove the entire stomach -

I have a job --(I am 60) but lots of people depend on me -- how long should I plan on being out of the game? -- assuming the surgery - and recovery - where will this take me and how long -- you have been through it --

Thanks for the help


DJB

DJB
The surgery itself will put you in the hospital for about a week or two (7-12 days) provided there are no other complications. As far as getting back to work, this depends on many things, one of the most important being the nature of your job. Prior to my surgery in mid July, I worked as a bartender. I don't think I'll ever be able to do that type of work again, and if I can, it'll take almost a year. However, at this point (7 weeks post surgery) I would be ready to go back to work now if I had a standard office job.
Hope this helps!

dayers said:

Hi. I had a total gastrectomy and lower portion of esophagus removed June 2000. I never had the chemo or radiation because my weight was so low they wouldn't risk it. I weighed 84 pounds after surgery. It sure is hard to gain weight. Today I weigh about 110 pounds. It took me forever to get to this weight. How are you doing?

Total Gastrectomy
Hi All,

Im 34y/o and had a total gastrectomy in Feb 2010 + 6 months chemo due to HDGC (Hereditary Diffuse Gastric Cancer).

I am now a "survivor", and doing really well, with a weight gain of 10kg since June 2010. I can eat basically everything, and with portion sizes exceeding many "normal" people. I also drink with meals, and suffer seldom from dumping syndrome.

I have decided to try to find the longest surviving total gastrectomy patient, and to network generally with anyone who would like a chat! Knowledge is power, and I feel i have a moral responsibility to help anyone out there.

Take care, warm regards, Kia kaha (stay strong!)
Brett

MrBBarc said:

Total Gastrectomy
Hi All,

Im 34y/o and had a total gastrectomy in Feb 2010 + 6 months chemo due to HDGC (Hereditary Diffuse Gastric Cancer).

I am now a "survivor", and doing really well, with a weight gain of 10kg since June 2010. I can eat basically everything, and with portion sizes exceeding many "normal" people. I also drink with meals, and suffer seldom from dumping syndrome.

I have decided to try to find the longest surviving total gastrectomy patient, and to network generally with anyone who would like a chat! Knowledge is power, and I feel i have a moral responsibility to help anyone out there.

Take care, warm regards, Kia kaha (stay strong!)
Brett

Total Gastrectomy
Kia Kaha Brett

I am a 55 year old (Kiwi living in London) who had a total gastrectomy in October 2010.

I had 9 weeks chemo before and after (the second particularly rough).

I have been hospitalized twice since, both times with small bowel blockages due to adhesions (scar tissue) but got the 'all clear' at my first six-monthly scan. Great news.

The eating regime is getting easier. I have found that chewing (to absolute pulp) is the key, even more so than portion size. It stands to reason when you think about it, mush or liquid is going to be a lot easier on your newly configured internal plumbing as it learns to operate without a stomach.

Certain fruits (kiwi or pear skinned and cut up fine) seem to be great. So is fish.

I have been told to avoid high fibre food - can cause small bowel blockages. Any theories on that?

Exercise seems to help as well.

Overall conclusion - it DOES get easier. Hang in there everyone.

Kia kaha

Martin

MrBBarc said:

Total Gastrectomy
Hi All,

Im 34y/o and had a total gastrectomy in Feb 2010 + 6 months chemo due to HDGC (Hereditary Diffuse Gastric Cancer).

I am now a "survivor", and doing really well, with a weight gain of 10kg since June 2010. I can eat basically everything, and with portion sizes exceeding many "normal" people. I also drink with meals, and suffer seldom from dumping syndrome.

I have decided to try to find the longest surviving total gastrectomy patient, and to network generally with anyone who would like a chat! Knowledge is power, and I feel i have a moral responsibility to help anyone out there.

Take care, warm regards, Kia kaha (stay strong!)
Brett

surgery
Congrats to you and hoping you have a wonderful blessed life ahead of you!
I was wondering if you could help answer a couple of questions?? How did you find a physician?? where do you start looking?? how do you start looking?? My husband was told last week that he has to have his stomach removed as soon as possible. yet we have to wait to get into see the dr for final results in two weeks. how mean is that to do to a person??
we are from cetral ill, been trying to look for some one that does these typs of surgeries in the chic area or the st loius area.
ANY THING you can tell us would be helpful.
thanks
tammy
grannygrumpx2@yahoo.com

MrBBarc said:

Total Gastrectomy
Hi All,

Im 34y/o and had a total gastrectomy in Feb 2010 + 6 months chemo due to HDGC (Hereditary Diffuse Gastric Cancer).

I am now a "survivor", and doing really well, with a weight gain of 10kg since June 2010. I can eat basically everything, and with portion sizes exceeding many "normal" people. I also drink with meals, and suffer seldom from dumping syndrome.

I have decided to try to find the longest surviving total gastrectomy patient, and to network generally with anyone who would like a chat! Knowledge is power, and I feel i have a moral responsibility to help anyone out there.

Take care, warm regards, Kia kaha (stay strong!)
Brett

gastrectomy
Hi Brett,

My names Lisa and it was really good to read your post, how are you doing well I hope?
My husband had a total gastrectomy in April, just finished his 6th round of EOX chemo, they will do a PET scan in 2 weeks, depending on that they will start radiation, then they will put him on a year low dose of maintenance chemo.

He is also pretty good with food, we haven't tried the drinking with food yet, but he did try a guiness the other day which went down well Do you eat salads cause thats the one thing he really misses and they say no too?

Anyhow I hope you are doing well.

Bye for now

Lisa