Just diagnosed

[lovinglife58]

I've just been diagnosed with stomach cancer, stage 2-3 and the surgeon wants to remove my entire stomach. Has anyone out there had this operation and what's it like to not have a stomach?

[O2Trees]

Molto apologies lovinglife. I had slipped onto the oesophageal forum without realising. Hope they can help you there.

[DaddyPig]

Good morning. I was supposed to have a small part of my oesophagus, and a small part of my stomach removed to get rid of oesophageal cancer. To cut a long story short, there was a leak, and to save my life the surgeon removed all of my stomach and oesophagus.

To say that it was all life changing is an understatement, and unfortunately I can't tell you that it hasn't left me with quite a few difficulties. It has left me alive though, and that, as far as I'm concerned, is the main thing. Following having my bowels pulled up I can now eat everything that I used to eat, even hot curries, just in smaller portions. Everyone who goes through this type of surgery is different, and has the capability to react differently to this procedure. Some people's recuperation time might be longer, or shorter, than others who've had the same operation.

Prepare for a different life but, not necessarily one that's as bad as you might currently be thinking. Remember that you're not on your own. Best wishes!

[lovinglife58 in reply to DaddyPig]

Thanks so much for sharing! It is ominous to think of not having a stomach but you're right life is more important.

[Plantman]

Hi, sorry to hear about your cancer. there are lots of variables, and the surgeons won't really know until you are opened up, as to how much stomach of your stomach is to be removed. Your journey, starts well before the operation, hopefully you will have chemo. before and after the op, and an laparoscopy, to see if the cancer has spread to other other organs, and along with PET and MRI scans and ultrasound endoscopies. All this will give your support teams a guide on what stage your disease is. The operation is a major op, think heart transplant and you are on par with that. having said all that, living without a stomach, can be a minor blip, it will take a good few months to settle down to a new you, (you will be sick as a dog) and at least a year and a half for you to become used to your new plumbing. Get physically fit, very importantly get mentally prepared for a massive change in you life. you will adjust to eating slowly and less, as you will just be sick and have major diarrhoea. I hated that, along with very painful wind!!!

I had my op a year ago, and have been lucky, I consider myself cured of cancer, and that all the struggles and scars are worth it. In that, I am better than I was before, I am slimmer, calmer and kinder. I wish you the best of luck.

[lovinglife58 in reply to Plantman]

I've had a CT and laparoscopy and happy to say it has't spread. And now hopeful that maybe they won't have to take it all out....but if so, so be it. My life is worth it! Thanks for your honesty!

[Hidden]

The easy answer is that it is far better than letting the cancer progress! It is a well-established operation that is done at a relatively limited number of centres of excellence. Some years ago the surgeons used to take out large parts of people's stomachs to deal with stomach ulcers and so on, but the number of these operations has decreased over the years because medication can deal with the problems much better.

The stomach is removed, and the remainder of your digestive system is pulled up and joined to the bottom of your oesophagus. You then have a new stomach that is much smaller. You have yards and yards of intestine and your system becomes shorter in length, meaning that food gets through a bit quicker, and does not settle in the reservoir of your stomach in the same way.

So you will have to eat 'little and often' because your new stomach will not be able to cope with heavy / large meals. There are several things that happen with normal stomachs. They produce ghrelin, that creates feelings of hunger, so you will probably have to eat by the clock rather than when you feel hungry.

They contain stomach acid that kills off some of the bacteria in your gut, so you may have to watch for infections. They produce vitamin B12 and iron, so you may need supplements for these. You might possibly get trouble with lactose intolerance. Depending on the precise details of your surgery you might get a bit of bile reflux. But none of these possible complications are compulsory, and some people do not suffer with them to any great extent, and they are all things that medication can sort out.

As with any major disturbance of your digestive system, it will take time to settle down, and will probably never be as robust as it was beforehand. Some food will not be possible any more because it creates indigestion, and some of that will be some food that you like.

It is major surgery and it will take you a long time to recover from it, but lots of people have done this before, and if you go to an OPA meeting, there will be plenty of people who will explain how they get on in practice. It is perfectly possible to have a good quality of life afterwards, and that is an aim worth working for.

It sounds really scary, but having seen quite a lot of people who have had it done, I think you should be able to cope with it like they have done.

There is also the cancer track to sort out with chemotherapy. People vary enormously as individuals as to how they react. Some people tolerate the whole thing well; others don't. Sometimes your taste buds change, but these often recover in good time.

You have to come to terms with the fact that, against your wishes, you have had this diagnosis. The good news is that it has been caught in time for you to have the prospect of curative treatment. It won't be easy, but you will find reserves of strength that you never knew you had. You have to get on with it, and to keep up your resilience as best you can, and you will get through it OK. You will finds that friends react in all sorts of different ways to your news - some will say the wrong things but they do not really mean to upset you; there will be others who are surprisingly good allies from directions you never expected. You also have to learn how to keep sharing your fears and anxieties with your loved ones, as they will go through this journey too, and you will get on better if you can do it together.

The people who seem to do best are those who find out about what is involved and try to understand what is happening (like you) but without getting obsessively interested in some of the details.

So you have our very best wishes for the time ahead!

[Golf1910]

Hi

I had my operation June 2012 and had a total gastrectomy the same as what you have had pulling up the intestine to join to the oesophagus. It should have been a 7 to 10 day hospital stay but as the join leaked a week after the first operation I had to have a second one and ended up in hospital for 7 weeks.

I have lost over 4 stone but seem to have settled around 10 stone. I go to the local Patients Group meetings where there are other people who have had similar or the same procedure done and it is encouraging to meet them who have had it done some 11 years ago plus so encouraging and good to be able to talk to someone in a similar situation as it affects each of us differently. In my instance I have had swallowing issues from the start and continue to have them. I was told it would be 18 months before it improved then 2 years then 3 now possibly wont get any better. Hurts to eat and drink although I do eat normally or as normal as possible, but have to chew a lot more than did, my favourite being shepherds pie? One will never be normal as such but it is amazing to think that you can have your stomach removed and the body adapts to it albeit with various issues attached. A guy I met had the same operation and had no problems eating or drinking and was putting weight back on but he suffered with dumping syndrome that I don't so swings and roundabouts. Most of us suffer with acid or bile reflux, bile in my case and would be in yours during the day and at night.

So nearly 2.5 years on and I am stable as far as weight goes, am still here that's the important issue, have lots of energy (now) and can do most of the things I could before, I may look like the guy from the Charles Atlas ad of many years ago who had sand kicked in his face,(I am 76 so need to be that old to remember) living a pretty good life. As I say one will never be normal without a stomach but as good as and any of the issues like swallowing, dumping syndrome or whatever is worth it to be here.

Lots of us out there so think positive.

Hope I haven't rambled on too much

Best wishes

Rob

[Westoncromwell]

Hi Loving life

I am 58 and three and a half years ago I had stage 3 cancer diagnosed and my stomach completely removed. I was told that this was the best route as the Tuma was contained within the confines of the stomach with no physical spread, they took out the lymph nodes and found zero spread and nothing has happened since, so I have the all clear.

Positives

I can eat anything still but not as much at a one sitting. If I over eat fat I get a bit of tummy trouble, if I over eat i get indigestion . As you can't absorb as much fat you can eat lots and not put on weight.

I lost 3 and a half stone and most of it is still not put back on.

Negatives

Lethargy and a bit of fatigue. Can get a little bit of depression, apparently this is common. Teeth problems !

I feel good and am living a very normal life.

best wishes

Brian

[alexLS14]

Hi. I was diagnosed with Oesophageal cancer in 2012. Had chemotherapy treatment for 3 months then surgery in Octber 2012 to remove stomach and lower part of oesophageous then more chemotherapy. I was one of the lucky ones - as you are - it has been diagnosed early enough to treat. Due to a leak I was in hospital for 30 nights. Can't say it has been a pleasant experience but I'm still here! Still having difficulty in estimating the quantity of food that I can eat without suffering stomach pains and just can't get into eating small quantities more regularly. I lost 3 stones and weight remains the same at 10 stone. I am fit enough (at 71) to still cycle and work part time delivering butchers products. It will be a hard struggle at times but obviously will be worth it. Persevere and take all the advice that the nursing staff give you. Good luck

[lovinglife58]

Thank-you all for your prompt response, support and encouragement! Will have to have a memorial for my unfortunate stomach !! But if it has to go for my life so be it. I am a warrior deep down and know I can handle all that comes my way....with all the ups and downs that go along with it. Will keep you posted.

all the best to all of you!

[Plantman]

Hi, mate

You are already lucky, the cancer hasn't spread, now your journey begins, you seem to be on a curative path, and there are many you will meet on your journey, who unfortunately are not.

Yes, you will have to be a warrior and a champion, I have been hospitalised with major infections, my tumour haemorrhaged a few weeks before the surgery, and was found slumped unconscious in the toilet of our holiday home!! lost so much blood, they thought It was the end! Chemo was tough, and knocked me for a six with life sapping infections and ulcers.. 2 weeks in ITU with a tracheotomy, but still made it, There were times when on chemo, slumped on the toilet, didn't know which end to point down the loo, I would say in my head ENOUGH, ENOUGH.. I had to summon my angels to give me strength. the reason you carry on is because you have a chance of have a second life, I recall many times on the wards and chemo rooms, those who shared their story, did not have that option, but it not stop them having a laugh or spread love and hope to those who were clearly suffering.

The positives are a new life, my hair fell out, but grew back darker and a lot less grey! I am slimmer and happier, and people who meet me think I am a picture of health!! look years younger and think i have had a face lift.. I think the chemo killed my ageing cells (it does to a point), and now will remain forever young, lol I am 58...yes the cancer has affected me financially as well, so that is another hurdle to cross..

Keep being a warrior, always look your best, if your hair falls out, cut it really short, or shave it off, and wear a Buff brand baseball cap, if you look like like death warmed up, use fake tan/moisturiser on your face, use bio oil on your scars, always chat the nurses up, hell, you have cancer, will have your insides removed and there is no dignity in itu, you are helpless and weak for a long time, so don't be all PC brigade, have fun shopping for new slim fit clothes.. god bless you and remember to thank everyone, be grateful, your family will share your suffering, so cry and smile and be a champion.. I wasn't an old hippie before this op, and look what I have turned into!!! help..

[lovinglife58 in reply to Plantman]

Your story touched me deeply...felt sad while smiling too. It's definitely not going to be walk in the park and the life changes are big. This journey is already making me the person I always though I could be through tears and laughter. It changes one's outlook on life and brings everything in perspective. I'm laughing a lot more than ever before and looking at life lighter. My joke is that I'm going to have a memorial service for my stomach! Plus I'm blessed to have a amazing family and friends who are sources on constant support and inspiration which i'll need lots when this process starts. Thanks for sharing!

[lovinglife58 in reply to Plantman]

Your story touched me deeply...felt sad while smiling too. It's definitely not going to be walk in the park and the life changes are big. This journey is already making me the person I always though I could be through tears and laughter. It changes one's outlook on life and brings everything in perspective. I'm laughing a lot more than ever before and looking at life lighter. My joke is that I'm going to have a memorial service for my stomach! Plus I'm blessed to have a amazing family and friends who are sources on constant support and inspiration which i'll need lots when this process starts. Thanks for sharing!

[lovinglife58 in reply to Plantman]

Your story touched me deeply...felt sad while smiling too. It's definitely not going to be walk in the park and the life changes are big. This journey is already making me the person I always though I could be through tears and laughter. It changes one's outlook on life and brings everything in perspective. I'm laughing a lot more than ever before and looking at life lighter. My joke is that I'm going to have a memorial service for my stomach! Plus I'm blessed to have a amazing family and friends who are sources on constant support and inspiration which i'll need lots when this process starts. Thanks for sharing!

[lovinglife58 in reply to Plantman]

Your story touched me deeply...felt sad while smiling too. It's definitely not going to be walk in the park and the life changes are big. This journey is already making me the person I always though I could be through tears and laughter. It changes one's outlook on life and brings everything in perspective. I'm laughing a lot more than ever before and looking at life lighter. My joke is that I'm going to have a memorial service for my stomach! Plus I'm blessed to have a amazing family and friends who are sources on constant support and inspiration which i'll need lots when this process starts. Thanks for sharing!

[lovinglife58 in reply to Plantman]

Your story touched me deeply...felt sad while smiling too. It's definitely not going to be walk in the park and the life changes are big. This journey is already making me the person I always though I could be through tears and laughter. It changes one's outlook on life and brings everything in perspective. I'm laughing a lot more than ever before and looking at life lighter. My joke is that I'm going to have a memorial service for my stomach! Plus I'm blessed to have a amazing family and friends who are sources on constant support and inspiration which i'll need lots when this process starts. Thanks for sharing!

[hilbean]

I don't have any words of wisdom to offer but wish you luck on your journey. In our initial consultations there was talk of surgery but that disappeared as soon as it was discovered that my husband was stage 4 so no surgery. Although they say it is not curable we remain positive and totally concur with Plantman's approach to it all. He's been lucky with the chemo in that he's not had any sickness. We're looking forward to him having a head full of hair and some new toenails for Christmas (yes, chemo can make your nails fall off, though we don't know if that's common). It has also given him sore hands and feet so we're also looking forward to strolls in the countryside again. But more than anything.... Love life and laugh lots.

[Jusjust]

Hi sorry to hear about your cancer, my husband was diagnosed in May 2013 Stage 2/3 N1, aged 48. He was then booked in for the op in July 2013, was in hospital for 10 days and came home, he did suffer with food intolerances, but we got that under control, he cant eat large portions but has medium sized portions and tends to pace himself, sometimes having two sittings, so 16 months down the line all is good, he lost 5 stone but was erring on 16 stone so he had the weight to lose, he has now put on weight, now at 12 stone, he went back to work in January this year he did struggle a bit, but he is so determined to get back to normal life for me and our 3 children. Life is good, he is here, a little thinner but we were very lucky I feel. You can live a normal life, but you do it differently now. When are you due to have your op?