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Oesophageal Patients Association
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Dumb question?

Has anyone, or some one you know, turned down curative total gastrectomy when offered? I know it is the only hope of a cure.

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I don't know anyone who has turned the operation down. In my case I had op to remove a stone from the bile duct and was told good news and bad news good the stone removed bad I had stomach cancer. I had 3 months chemo and then 6 months after finding out I had a total gastrectomy and while I still have issues 7 years on I am still here albeit now in Small sizes rather than XLarge. Hope this helps

Rob

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Thank you for that. I did not really expect anyone to turn the op down. It just crossed my mind - what would happen if I did nothing as at present I do not feel really ill? How long would I have before the cancer would get out of hand? Maybe I would be content with 2 good years ahead of me while the op and the immediate aftermath may mean curtains within days or weeks. I know that is a stupid way to look a it. But that is the way my mind has been working overtime. But In the end, I am sure I will take the surgeon's advice.

Again, thank you for giving me hope.

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Agree with champagnelover (good title) the surgeon will give you the best advice and with me 7 years on and champagnelover 10 years on we are good evidence that it works. Also your specialist nurse who has been my contact over the past years will always talk to you. See what they have to say about it all and there is a good life after for sure.

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Hi

Ias offered the ivor lewis operation ,it was curative , have a chat with your surgeon , ,if they say it is worth doing go for it , good luck stay in touch with us all

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I have cancer of the ospharagos. I have had chemotherapy and radiotherapy, but I can still not eat or sometimes drink, but in a good day I can go out and enjoy a drink (in moderation) , I think your attitude to your condition should be applauded and I feel exactly the same. Life is hear to enjoy while we can

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I am sure your surgeon can give you the best advice though the final decision is yours. I completely understand why you ask this question I can only say that yes it is a tough journey after the op but I am still here after 10 years and really enjoy life. I now have 3 grandchildren I dont think I would have seen if I hadnt had the op. There are many others on here who will probably say the same. Do you have a specialist nurse you can talk to? I found that helpful when needing advice. Good luck - hope you can make the decision right for you.

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Thank you so much for your encouragement. The main reason for asking this question was the concern about my age (82). How much time is there left for me anyway? The surgeon told me that they don't operate often on over 80s because they usually are not fit enough for the op etc., but he recons I am. My 30 years of rambling still to this date (over 35000 miles) has kept me in good health.

I will be having a final discussion with the surgeon and the specialist nurse. And although my emotions and thoughts are up and down like a yoyo, I think, in the end, I will take the surgeon's recommendation.

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When I was offered the operation I was two months short of my 80th birthday. Here I am today less than six months short of my 88th birthday. In August I'll have survived 9 years. Nice weather this morning as I was out this morning in shorts and vest for a change on my run at 04.45Hrs.

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Thank you so much for telling me of yet another success story. Indeed, where there is hope - and there seems to be in my case - the chance must be taken, so I keep telling myself until the doubts creep in again. But for all my doubts I am sure that when the time for my decision comes I will be ready to take the plunge and go for the op.

Indeed, the wonderful sunshine helps to lift the spirits. I am even considering going on a six mile club walk next Sunday unless, of course, things develop meanwhile.

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Hello, I have heard of this on perhaps the Macmillan site or Cancer research uk site. Another option is PIPAC (aerosol chemo) that is if it has spread to the peritoneum. There is a very informed person called SDHon here who may know of other options eg immunotherapy.

One thing I have discovered is that if you are going to have a gastrectomy, it should be done by a highly skilled surgeon who does them all the time. In the uk, Nick Hayes at Newcastle upon Tyne (NHS) does hundreds of gastrectomies every year. I would be delighted if I had the option of a gastrectomy. Please reconsider. Yours sincerely, Karen x

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I too have had a total gastrectomy and I'm pleased to say i am still here and just going into my 12th year..without the surgery i would not have been here, although i still have a few problems, life is good..i have a brilliant surgeon/ consultant who has treated me as a whole person and not just the stomach cancer..Mr Dmetrewski at the QE Birmingham..i also have a specialist nurse with a great team medical staff looking after me and they are always there when i need them..

Yours Sue xx

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Thank you Sue. Sounds encouraging. I need a bit of encouragement. Things have been moving quite fast for me. had laparoscopy on Thursday and despite the Easter Hols I had a phone call from my specialist nurse to tell me that everything was fine and that they would book me in for the op unless I preferred to have another chat with the surgeon. I think I need that to ask a few final questions. The surgeon seems keen to get on with it. So on Thursday it will be my make-your-mind-up time. I think I will go for it despite being an octogenarian as I feel at present that I still have a lot of living to do.

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Best wishes for today, still a lot of living to get back too. You might even achieve the impossible and make 107yrs and beat my 25yrs!!!!! Sally

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Everything moved quite quickly for me too, within 5 wks of diagnosis i had the Op and here i am going into my 12th year..

Whatever your decision i wish you all the very best for the future, stay possitive and remember you are not alone, keep intouch and let us know how you are doing if you have any questions just ask

All the very best.

Sue x

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thanks. Will do. x

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Hello there. I hope you are feeling ok today. You have a difficult decision to make but you will know what’s right for you when decision time comes. I just wanted to share a short story. I was chatting to a lovely gentleman who works at my son’s primary school last year and he was telling me he was going to retire (he is 85 years old!) and he was telling me he’s decided to finally retire and relax. He was telling me about his total gastrectomy he had had 5 years previously and even though he had lost some weight and was “a bit off food”, he was just happy to have been able to see his grandkids and come back to work. The man is a legend. He gave me faith at the time I needed it as my father in law was just diagnosed with oesophageal cancer at 80 and I was worried about him having the operation. I needn’t have worried. He is now also back on his motorbike and it’s not even been 12 months. Every one is different and if I’m honest I felt a little bit about my father in law as what you have suggested about yourself but I was wrong. I hope you come to the right decision for you though but please know you if the consultant thinks you are fit enough then you are fit enough. All the best. Dawn xxx (sorry it wasn’t a short story! Haha) xx

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Thank you so much, Dawn. Yes, I have already made my decision to go ahead with the op. Of course, there can be no guarantee that I will get through it, but I will try my very very best. I call myself lucky that I am given the chance. Thank you for your story and the encouragement it conveyed to me as have all the other people's replies have done. Things have changed for me from bleak to hopeful. Thank you. xx

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All the very best to you. I’ll be thinking of you. These surgeons and their wonderful teams are awesome. You’ve just got to keep positive as best you can now and we are all rooting for you. 👍🏻❤️😊 Dawn xxx

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A slight spanner in the works. The surgeon told me if it happened to him at his age he would definitely go for it. What he would do if he was my age he really didn't know. It implies that perhaps I should be glad for the years I have had and live the remainder of my life - however long or short that may be be for no one can say - as best I can without going through the ordeal of an op. I have thought on those lines myself, but yet he is keen to do it. I think he just wanted to be sure I considered my options.

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Great hope all goes well and hope you will be back letting us no how you got on

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