My husband has been diagnosed with stage T1b N0/1 oesophageal cancer along with some barrett's oesophagus. He has used antacids for 25 years, rarely drinks, has never smoked and has a higher BMI. He has had a resection which has removed the cancer. On checking the resection healing, by EUS, inflammation in one node has been identified as 6mm. This may be nothing of concern and just a raised node. But there again it could possibly be cancer. An Ivor lewis operation has been recommended (and was recommended before the lymph node was found) but on the understanding that the biopsy may come back clear and that the surgery was therfore preventative not curative. He has surgery scheduled for a couple of weeks time. Thankfully no chemo is required. We understand that this operation is formidable and carries a number of risks. The non-surgical alternative of monitoring matters is not very reassuring.
My husband is 49 and we have two children, one of whom has complex disabilities. He is a very private man and does not want to join a group. I had surgical and chemo treatment for breast cancer three years ago and am in remision.
I would appreciate any thoughts and assuming he goes ahead with the op, any tips for how I can best care for him post operatively.
Written by
Oneluckywife
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Hi and welcome though so sorry you are going through this and have had the need to drop by !
Can you say a little more about the resection you mention and the procedure that your husband has had ? I thought an Ivor Lewis was to carry out an oesphageal re section ?
Hello Violet queen. I believe it was called a resection. He had a cancerous growth which had grown through to his muscle, removed from his oesophagus via EUS.
I had a similar situation 7 years ago. I was T1, and had a mucosal resection but they were not sure they had all the cancer. I was given a choice of surgery, chemo or "watchful waiting"
I choose surgery, and had the "shark bite" op. but afterwards the biopsies were clear, they had got all the cancer with the resection.
When I think about it now, I would make the same choice again. I couldn't do nothing, and chemo is harsh but without the more certain outcome of surgery. But it's not an easy choice.
It's major surgery, and it takes a long time to recover, but it would give your husband the best chance.
I agree totally, I was in a similar situation 8 years ago after having had Barretts for over 20 years being regularly monitored. The operation is a big one, but if he is reasonably fit then he should (in my opinion) go for it - there will be hard days along the way but (again in my opinion) the biggest hurdle is someone attitude tot eh surgery. I was determined I would return to work quickly , which I did (a bit too early if I an honest now) but I needed to do it for my own sanity. He will need support of course but when i came out of hospital my wife cared for me wonderfully, I prepared beforehand, buying a comfortable reclining chair (which I slept in for about 4 weeks) and prepared VERY small meals in the freezer (the size of a mars bar! and set myself a goal of eating a macdonals happy meal - something which took me about 6 months! but now I am a 'fit and healthy' 58 year old with a whole life ahead of me - I would not hesitate to make the same decision again given the alternatives. if he or you want to chat or email direct just let me know - best regards and good luck . RAy
If he is anything like me he wont need or want 24 hr care- he will mainly want to be left alone I was very happy to have someone around but not too close if that makes sense. I slept downstairs as I had trouble lying down to begin with - well getting back up to be more accurate as the cut across the front is intrusive into the muscle. Really I wanted to sleep more than anything, have a TV near by to take my mind off things and very soon was out walking the dog, a trip to the end of the road first that built up to more than 5 miles a day within about a month or so. For me getting out of intensive care was my first goal (3 days) then getting out of hospital (13 days) then walking the dog (21 days) Return to work 1 day a week ( 90 days) return to work 3 days a week (120 days) return to work 'normally' almost 5 month post op. I found the more I prepared the better (military background) so the freezer was full of tiny meals before I even went into hospital. I was therefore quite self confident and self sufficient when I came out- I did have a few challenges along the way as we all do but I am now 7 years post op, at 12.5 stone (pre op was almost 16st and went down to just about 10st I eat all high calorie stuff chocolate trifles etc and drink a can of lager every night (300 calories) I still eat chocolate panins during the night i before i go to sleep and one around 2 am otherwise i get reflux, sleep with 4 pillows and a support and am generally in good health. He and you are the best placed to know what he will want support wise as we are all different rayw55@hotmail.com if you want any more details on challenges I had etc
Hello patchworker. Thank you for your reply. I am so pleased to hear that you are clear of cancer albeit that you had to have major surgery to know this. Does this also make it less likely to reoccur? It is off course my husband's choice - you don't sound as if you have regrets about going ahead, which I am concerned about for my husband. If it were my decision I would personally not be able to manage the uncertainty and am not a person who can let things lie. It would be surgery for me. But he is struggling more with the decision. He would much prefer to be told what to do (married to me for 25 years may have something to do with that!). Waiting and watching sounds like a risky option especially with two children. If any cancer remains and monitoring does not pick it up I am assume it is just months to live - is that right? I am also assuming that if you've had cancer in the oesophagus your body has shown it would be happy to host it again. Having to have the op 10 years down the line sounds more risky to me if a success factor is age as the research suggests. But then the possibility of dying operatively or post operatively is very scary, as is living in pain and discomfort for the rest of your life if your body doesn't adjust well to your new lifestyle.
The posts I have read so far sound quite positive about life post op, but I wonder if those for whom things didn't go so well aren't represented here?
I appreciate your reply and that of Violetqueen so much.
Any thoughts on how I can help my husband will be gratefully received.
I think people who've had an oesophagectomy and have had a really perfect outcome, will be so busy getting on with their lives, they won't have time to post on this website! So only the people with problems post here!
Sorry to hear about both yourself (pleased to hear you are in remission), your husband and your child. Life is really not fair is it? How hard it must be for you.
I had the oesphagectomy 5 months ago (I was a petite, reasonably fit and healthy non-smoker who barely drank - 53 years old) after 8 rounds of chemo and 25 radiations and I had a Mckeon version of the op (basically a neck join instead of a chest join which has more complications) so if I can do it so can your husband. It is the hardest thing I've ever done (worse than chemo and radiation together) and I had complications (some short-term and some long-term) but it does give you a chance at life - I have an 11 year old. There are many survivors who post on hear and Macmillan.
Post-operatively this is what was the most helpful:
1. Be at the hospital as much as possible. The nurses are busy and have little time for you. I found my husband being there every hour he was allowed a great help. Be prepared for multiple pipes coming out of your husband. You can help him wash etc. The worst pain is where they deflate your lung and cut through your ribs - I found it agonizing (I had to be injected with nerve blocks as my body shook non-stop from pain) and did not want to talk but I read some patients barely feel a thing so everyone is very individual.
2. The surgeon advised post-operatively for my husband to bring soft food (avoiding dairy and sugar as this triggers dumping syndrome) as many hospitals do not cater for this diet. Having said that some surgeons insert a feeding tube but I didn't have one so they started me on fortified drinks which of course have dairy and sugar and cause havoc with your digestive system. So getting this organised can be most helpful. I was on soft foods within 3 days. So discuss with the surgeon what he will do and be prepared.
3. The vagus nerve is cut so you feel no hunger pains or appetite so be prepared for that when he starts eating properly. You have to eat 5-6 small meals per day and it helps to have someone prepare it and 'serve' it as he will have no real desire to eat. This is a big chore but probably where he will need most help. The taste buds are also affected by the op usually temporarily.
4. He will need a bed wedge or bed that elevates as you have to sleep elevated to prevent the acid reflux as your stomach is pulled into your chest and the sphincter is removed. It is best to organise this prior to surgery.
5. I found a physiotherapist to come to my house to give me massages to ease the pain in my back, ribs shoulder etc after the op and this was most helpful and worth every penny.
6. He will want to sleep/rest a lot and be near a bathroom. The surgeons say it takes 9-12 months to recover from the operation but I think this depends on pre-operative treatment, fitness etc. Make sure your husband walks and gets exercise as this speeds recovery and reduces the aches and pains.
7. It is common to be depressed after the surgery or suffer mild PTSD according to my oncologist and psychologist so be prepared for that and get him counselling such as through Macmillan. It is a life-changing surgery and frankly I just wanted to die after it but, I soon changed my mind as the pain subsides and you get used to the 'new' plumbing.
8. The Oesophageal Patients Association (OPA) has loads of advice and you can call and talk to someone who has been through it privately too - so bear that in mind. There are no prizes for suffering in silence.
9. Establish a good line of communication with your GI nurse and surgeon's secretary as it is best to get advice/help asap for any issues.
10. The first 2 months are the worst (the word of 2 surgeons I saw and my own experience) but I hated being told to be positive - the best was being told 'It WILL get better' and it does.
He will likely (but not definitely) live with some side effects and complications and this is hard to accept initially. I struggle with swallowing (gaining weight is very difficult), sleeping, talking (my vocal chord is paralysed but slowly improving) and aches and pains (sore throat, sore shoulder, back ribs and diaphragm) as many do but I managed to go skiing for several hours per day last week and I am only 51/2 weeks post-operative and many people go on to having full lives/employment etcetera. Your husband is still young and luckily does not have any pre-operative treatment which will be helpful but he must make sure he is as fit as possible before the op.
I wish you both the best of luck and I hope this helps.
It helps enormously. Thank you. I feel energised to get things ready. I am going to drop by the Disability resource centre and see what they have we can try before we buy. The physio is a lovely idea. My husband is third generation Italian and enjoys doing the cooking. My cooking consists of soup and nursery food, so it sounds like I am also set!
Hi onelucky wife - if I were in your shoes I wouldadvise your husband to the surgery .
From what I read on here there are various types of surgery .I think the Ivor Lewis is the older gold standard one and more invasive and hard to rcover from than other approaches .
I had a transhiatal esophagectomy so no broken ribs or deflated lungs and I think an easier recovery . It involved an incision in my neck and a "rooftop" scar . Some hospitals do laproscopic surgery .
I've not lost my appetite ,still eat too much and am overweight .
I was out of hospital after 10 days and able to self care - get up ,go to the loo ,make snacks etc unaided . Cooking the husband and son lamb stew a few days after discharge was perhaps a challenge too far ,tho I did achieve it .
It was hard to position myself in bed and to get in and out as it's as if you can't use any muscles in your torso .
I personally think you should shop around/get other opinions about the type of surgery . I imagine whatever hospital is treating your husband will offer the op they are most familiar with ,of course . And I suppose ( ?) maybe some types of surgery are more suited to the patient ? But the Ivor Lewis seems awfully harsh and I think ,to be avoided in favour of other types .
I was in my sixties ,female T3 ,N0 and treated at St Thomas in London .
And yes ,do remember that most people posting on line have had a few problems .I haven't really .3 years on I'm off to plant some bulbs ,go to Lidls and am thinking about getting back on my bike . And I promise you I wasn't and am not now very fit .
Do keep posting and we'll all keep trying to help .
Great advice thank you. I am starting my shopping and prep today. Am I right in thinking your op involves surgery to the neck? Unfortunately my husband has a phobia about his neck and throat. He couldn't have the first endoscopy because of this. He just pulled thr tube straight out. I am so pleased I forced him back for a second attempt. I suspect he would be even more freaked out if it involved his neck but I am certainly going to check out other options for him.
Tricky .The scar on the neck is not big and of course you're not aware of the surgery at the time !
I see ( I think ) that the Ivor Lewis makes it easier to remove more lymph nodes ( I could have misunderstood so don't take my word for it ) so perhaps that's why there's a variation in type of op .
It is lovely to hear from both men and women, and really encouraging to hear you're stories. We were thinking that his quality of life afterwards would be really poor and not worth living for. I can see we need to focus on the ling game. All tips are gratefully recieved. When I was in hospital I used to sneak in a fresh lemon and whenever I needed a boost I would scrape at the peel and inhale the zesty fragrance. It took me away from the awful smells in the hospital and transported me to the med. I feel far better prepared and thank you all for your generosity and kindness. I am feeling very lucky indeed.
I think your husband won't have energy enough to do much cooking at first, and he might find everything tastes and smells different, so he might not enjoy the same things. Some things are easier to swallow than others. I'm told meat is difficult, but I don't know because I'm veggie. Bread is also difficult at first, but I find butter helps it slide down. And I find eating really hot food causes Dumping.
You'll soon find out what he enjoys and what he can manage to swallow. The swallowing gets much easier with time. And, of course, little and often. which causes a lot of dirty dishes, so I hope you have a dish washer!
Thank you patchworker. We do have a dishwasher but nobody like filling and emptying it - I guess it's going to be me doing it! We have a holiday already booked for our 25th wedding anniversary 3 months after the op.
My husband had the ivor lewis operation on Thursday. 8 hours on the table. It was pretty grim to start. I wasn't prepared for that. However, he is now off the ventilator and on a mask. The next goals are to manage his pain, keep him awake, get him moving and off the oxygen. It's a real roller coaster but so relieved he got through the op. I hope to speak with the surgeon to see if there is an alternative to morphine as this is making him sleep and therefore not move or breath fully by himself. I would not recommend having a surgeon and upper gi nurse at one hospital and the operation at another. Administrative nightmare involving lots of angry phone calls to stop the op being cancelled because of missing paperwork. Most admin staff seem to be on holiday, long term leave, work part time or else problems arrive at 4pm on a Friday when everyone leaves. However, the op is over, he is alive and well enough to phone me at 6am on a Sunday to ask me where I am.
I had this same operation 4 yrs ago, and i'm just getting used to everything that goes with it. Eating is the most thing that i'm trying to Beat, And the sleep,if you have any questions i will be glad to help.
Hello there I had the Ivor Lewis op 7 months ago, I declined the op two years ago and persued some radical alternative therapys they worked in that the cancer stabilised at stage one and did not spread to nodes, I was very fit at 65 years of age and actually did a building job while I had chemo and radiation I wanted to wait and see what happened as there were no visual signs but the doc said it was in the walls of the osephegus and talked me into the op I lost 20kilos and had the usual eating problems you have to be prepared to give up your old ways of eating and be prepared for a compromised lifestyle next to a heart lung transplant it is the most invasive surgery you can have O wish I had waited a bit longer but being a public health patient I did not have the choice as I had declined once already there are plenty of survivors and it's better than being in an urn on someone's mantelpiece
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- best regards and good luck . RAy 
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