I was diagnosed with oc in October but various complications in the testing process means I've only just found out I'm being offered surgery. At first I was told I'd get some of my oesophagus and some of my stomach removed, but nodal involvement in my abdomen and the fact my junction tumour has grown downwards has meant that they are instead going to remove my full stomach and just the very bottom of my oesophagus.
I've spent a lot of time reading about the various types of oesophageal surgery, however aside from nhs leaflets I have no idea what to expect from the procedure I am getting. Has anyone had this and it would be great to read of your experiences. Cheers in advance.
Written by
gwood80
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If you look at this link you will see a diagram of the 'conventional' Ivor Lewis procedure which many members of this site have had.
If your surgeon intends to spare the greater part of your oesophagus then you are indeed fortunate, however that begs the question as to how the gap between the remainder of the oesophagus and the duodenum will be bridged?
The normal oesophagus is 10 to 14 inches long and about 1 inch wide.
Also how will you take in food?
You need to establish that before we can make many meaningful suggestions.
In general the ramifications of this type of surgery are many and varied. You can get a very comprehensive overview by plowing through the last 2 or 3 years of questions and answers on this forum. This will be vastly more informative than any number of leaflets.
I can tell you from bitter experience, having been one of the early patients 26 years ago, that any amount of pre-op study will pay handsome dividends post-op.
What I've been told is that the remainder of my oesophagus will be attached to my intestine, that I will have one large scar like a smiley face across my abdomen just below my ribs. I will be fed through a tube into my intestines for the first 5 or 6 days, and then we take it from there depending on how the join has healed etc.
Very interesting and rare. How many such procedures has your team performed .....track record is everything.
My unqualified speculation is as follows:-
1) The anastomosis (the join) will be intra-thoracic --that is in the middle of your chest, which should be much less troublesome than say mine, which is cervical IE up in the neck where it has interfered with my Left Recurrent Laryngeal Nerve (Speech/Swallowing/Saliva/Cough Reflex etc).
Your swallowing should be much better given that the substantial residual length of oesophagus will kick off with strong initiating impetus, which ought to be transmitted on down past the anastomosis.
2) It may be that some functionality will remain with the Upper Oesophageal Sphincter. This will be of value in coping with reflux in the future.
3) Do they propose creating any sort of pouch to serve as a quasi-stomach?
I was given one about the size and shape of a samosa, a little triangle but better than nothing. My comfortable capacity is about an half a cup-full; however since I am not prepared to snack/graze throughout the day (dumping/hypos) I push it and consume a small adult helping per sitting. I was in a meeting recently with a gastro surgeon from UCH who said he had seen such structures stretched up to 5 inches across. Undoubtedly this has happened to me as when I overdo things (getting carried away in a social situation) the distended stomach tube impinges on my lung with unpleasant consequences.
4) Without any residual stomach tissue incorporated into an Ivor Lewis style artificial stomach tube you will have:-
A) No hydrochloric acid at all. This will impair digestion of certain foods but, particularly, provides the first line of defense against ingested bacteria and other organisms. Even with some secretory capacity I never risk street food or dodgy restaurants and we observe stringent hygiene in the home.
B) Very little Ghrelin..............this is the 'hunger hormone' which is believed to signal the brain "eat".
Most of us struggle with very reduced appetite and have to force ourselves to eat with little or no enthusiasm. This does improve over time (several years time scale)
C) Potentially substantial weight loss post-op. Up to 4 stones is not unusual but again this improves over time. With my severely reduced intake as above I now struggle to keep my weight down, albeit with a norm lowered from 13 to 11 stone.
This aspect can be distressing for partners/loved ones, particularly those charged with producing tasty, enticing meals.
D) No Pepsin. This is the enzyme responsible for digesting proteins. You will need to work hard on maintaining a balanced diet to avoid malnutrition.
E) In the context of D) above, it is quite hard to avoid a deficient diet, due largely to reduced absorption. In particular watch out for minerals Calcium (osteoporosis) Iron(Anemia), magnesium (Neuropathy) and crucially B group vitamins - I would expect that you be put on 3 monthly injections since you will not be able to secrete co-factor - see:
F) Have you been briefed on Dumping and the Hypoglycemia which may follow that? This can be life-threatening.
G) What does your team propose apropos the positioning of the Sphincter of Oddi - this is the nipple responsible for the admission of Bile and Pancreatic Juice into the Duodenum? This will have an impact upon digestion and reflux.
H) What does your team anticipate doing about the Gallbladder? If they are intent on it's removal then you may have been sentenced to a lifetime of fecal incontinence due to BAD (Bile Acid Diarrhea). There are remedies but removal is best avoided if there is no likelihood of stones in the future. This decision will be mediated by the view as to how hard it would be to conduct a subsequent second procedure at the same site.
J) Will the Pyloric Sphincter be preserved or not?
5) Have you worked out a sleeping strategy?
6) What Chemo/Radio therapy is proposed?
That is quite a lot to get to grips with, however without this level of information I would suggest that you are not in a position to give fully informed consent.
Lastly bear in mind that NHS resources simply do not stretch to the sort of hand-holding and support post-op that would be ideal for such a major procedure. Albeit some areas are superb others less so. Hence the more you are up-to-speed now the less neglected you may feel going forward.
Your posts (and the care you put into your responses) and information are incredible. Thank you for these. Have the same laryngeal nerve issue as you and cervical join (I had minimally invasive Mckeown during which they unexpectedly found a skin lesion which had bypassed the radiation so hence the neck anamostosis - mine is very high - I just have an oesophageal stump).
I agree with you that pre-op research is critical. I was told of the complications in an overwhelming hour and a half pre-op briefing just before the surgery. I wish I had better understood the surgery (did research into chemo, rad and latest protocols but nevertheless have enddd up with side effects from all) as I did not understand that I would have no appetite, hunger pains, develop an intimate relationship with toilets, have a paralysed vocal chord etc).
I had full stomach removal last August and part of orsophogus. I have an upside down v scar on my stomach but it will depend on your surgeon. My surgery was performed by Mr Davies in Bournemouth. You need to speak to your surgical team & find out which is their preferred method. Let me know if you want to know anything else.
Claire
It may be worth your while to download the booklet 'Life After Surgery' from the website of the OPA.
It is not uncommon for OPA members to have had a full gastrectomy, but you also need to know that everyone is slightly different from everyone else.
As far as the cancer side of things is concerned, you probably feel that you have no realistic alternative, and to a large extent the details of the surgery are things you need to appreciate only to the extent that it might affect your digestion afterwards. The people who do the best are those who appreciate what is involved, but without getting too obsessive about the details. It does sound strange to be living life without a stomach but lots of people do it and the OPA can put you in touch with people who manage it well. (The helpline is 0121 704 9860)
What are then the issues for you is how well your shortened digestive system will cope. For many people it will generally be 'OK' as long as you are careful. It may be a good idea to try and get used to a diet that steers clear of too much sweetened food before the surgery, so that things are not too much of a shock (it will help against potential 'dumping syndrome').
It is quite a lot to get your head around, both for you and for your family. It is not an easy thing, but it is quite do-able.
Thanks for the replies. My surgeon is Mr Ben Younes at Wishaw. He performs upper gi surgery once a week and has done for years. I'm not sure what percentage of these are this particular op, but as the clinical director of the hospital he is very experienced.
I have had 3 cycles of ecx and the plan is for another 3 cycles after surgery. I am relatively aware of the issues such as dumping, possible lactose intolerance, vitamin injections and such but I am not 100% of the more technical surgical details that have been pointed out. I will contact my upper gi nurse regarding these. When it comes down to it, as Alan implied, without this surgery I have roughly a year, maybe a little more, so as a 39 year old with two kids under 5 I really don't feel I have any other option.
The op is in two weeks time, so at least I don't have a long wait...
Sounds like you have everything to live for & hopefully if all goes well you will be fine, I am not saying it will be easy, but you will cope with anything that get thrown at you because you have too. Take each day as it comes & don't try to do, or eat, too much after the surgery. Thick soups & mash loaded with butter & cream will help with nitrician. I was in hospital for 8 days, had a feeding tube left in but it was removed a week later. Everyone is different but being young helps, I was 43 & I think my positive attitude & support has helped a lot.
Sorry - I should have made the list even longer by mentioning:
a) Will they be deflating a lung? If not this will speed up your recovery compared to us Ivor Lewisers.
b) Try to arrange as much physiotherapy as possible.
c) You will need good pain management to cope with serious discomfort at the midriff area for the first ten days but will have been spared the worst of the standard IL procedure which is the thoracotomy, under-arm entry via the ribs.
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