I would really appreciate some opinions. My husband was diagnosed in March with Esophageal Cancer, T3, N0, M0. He will start Chemotherapy and Radiation this week. I have been reading many of the posts on this site and are questioning if the surgery is really necessary. The surgery itself seems like a nightmare, the recuperation long and painful. The side effects, diarrhea, vomiting, painful gas, dizziness and not being able to eat. At what point does one return to normal? Does one's lifestyle completely have to change? I'm concerned as my husband has always been very active and I'm honestly wondering how he's going to deal with all of this. What is dumping? Is a feeding tube necessary or just in some cases? I know I could ask the Surgeon all of these questions but I would love to hear from those who have experienced this. I do understand that, without the surgery, there is a 40% chance of the Cancer returning and a 60% chance it may not. I have also read of cases where even after surgery the Cancer has returned. So what say all of you.
Many thanks.
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aussiemummy
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I had the op five years ago when I was 72, I was fortunate enough not to need chemo or radiation as I was diagnosed at a very early stage. The worst of my post op difficulties lasted for roughly four months, I didn't have any pain after my ribs had healed just a bit of tenderness around the area where the scars are. As far as I remember, my ribs didn't take very long to heal - about two weeks I think, and they only really hurt when I coughed, laughed or sneezed. The worst pain was in my right upper arm (due to the position it has to be held in during the op) but this only lasted for a few days. The biggest problem I had was vomiting, every night I'd start coughing up mucus and then the vomiting started. I was eating small amounts throughout the day with no problems but because it was such small amounts I was still using the feeding tube, and it was only at night time that the problems started. I had no painful gas, dumping (diarrhoea) was an intermittent problem that more or less sorted itself out once my body had adapted/got used to my new 'plumbing' arrangements, although I can still have the odd bout of it if I've eaten a little too much. 'Normal' for me now is slightly different to my old normal, I eat smaller portions of the same foods that I enjoyed previously, I sleep (with three extra pillows) in a reclined position and I have to avoid bending over when I've eaten or had a drink. My recuperation really srarted to take off after the feeding tube was removed three months after my op. It was accidentally damaged while two stitches were being replaced so it was removed, and my vomiting stopped, I 'think' the excessively sweet Fortysip food supplements were causing the vomiting problem, not the tube itself. I did have to go back into hospital at one point due to being dehydrated (as a result of being sick) but that was before the tube was removed. From then on I started making progress, I think if I'd been a few years younger I'd probably made a much quicker recovery, as it was it took me about eighteen months to feel fully comfortable with, and 'confidant about' my new normal. Don't know if that's of any help to you as its only my personal experience, but perhaps it will answer some of your concerns. Hope all goes well for your husband and yourself.
I had my Ivor Lewis operation in 2009, I was a very active person and indeed still am, you do not say his age and I guess if like me he was around 50 then there is no decision to be made in my mind as this cancer is particularly nasty and needs to be treated accordingly. I was told I would need to take up to 12 months off work, I went back to work at 3 months, albeit a staged return to work over a month or so. The surgeons will not introduce a feeding tube unless it is needed that really depends on whether the join heals quickly or not, each case is different. If he is 80 or older I would say it may not be worth it but at my kind of age it was a no brainer. Life will change for you both, he will need your support at times even if it is to remind him to eat! I bought a reclining chair before my operation and slept in it for around a month as to lie down was just too uncomfortable, My wife prepared VERY small meals and froze them ( the size of a mars bar basically for each meal) and I found this a great help to have food every couple of hours , I was also very lucky and do not react badly to dairy products normally and always concentrate on the highest calorie foods available. My wife will tell you I was at times a grumpy old git so much so she bought me a mr grumpy t shirt but all I wanted was to get back to a normal life, that may not happen. I now sleep alone as I need to sleep well supported almost sitting up with 5 pillows, I have not felt hungry in over 7 years and doubt I ever will so if I have a busy day I admit I forget to eat, I monitor my weight to make sure I stay at a reasonable one. I have found that the dumping is sometimes an issue but that is normally when I have tried to over eat or eaten too much chocolate. Most of my foods are now easy to digest stuff, trifles, porridge, etc I find eating out OK as I always phone in advance to tell them that my portion size is that of a small child of about 5 and most places only charge child prices for me.
Sorry for the length of this reply, but I just wanted to say that although it's a long road this last week I have done 48 hours of hard graft, fencing, rebuilding stables, groundwork, etc and although my wife says I look gaunt (I am now just under 12st and 6 ft, I feel great, yes I'm tired and if I am honest have overdone things this week but I was in the forces for 20 years and do not like to take things too easy, that said I took early retirement when the opportunity arose as when I do over exert myself it takes a few days to recover. I truly believe that we should treat the cancer as aggressively as it will treat us, so for me if the option of surgery is there take it, ask as much as possible before and do your research, I am more than happy to reply to a private e mail if more details of my personal experience may help or indeed have a phone chat with yourself or hubby to talk through my experiences, we are all different but as you can tell on here we are also very much alike, having experienced or going to experience major changes in our life, but, for me the alternative to surgery is not one I savour Ray
I was the same stage but I went for the surgery. I was diagnosed at the age of 32 and by the time I was a 5 year survivor I had 2 children born to me post chemo then surgery so I may not be an accurate representation of afterwards as having children in itself changed me. I do know that I wanted the chance not to look back. There are certain things that I still avoid and I can not eat huge portion sizes but there are worse things. I am 43 at this stage.
A diagnosis hits the patient's nearest and dearest, too - they also go through the journey, probably worrying even more; it's usually clearer for the patient - they follow the instructions given, to give themselves the best chance. Hope you can try and be strong for hubby?
Have they said that he'll definitely need surgery as well? i.e. is he facing THAT decision at this stage?
As all the previous 'posters' say, surgery/recovery is a really tough procedure - but they've been strong/positive and all survived it!
I've no medical training; just my personal experience.
Significantly, you don't say whether your husband has Adenocarcinoma or Squamous Cell Carcinoma (SCC) - if you know? IF SCC?, there is good clinical evidence that combined Radical Chemo-Radiation can treat it well - whilst I understand surgery would def. be necessary for Adenocarcinoma. In some cases with Adeno, they may give Chemo first to try and shrink the tumour before surgery.
[I had SCC - T3/4A, N1,M0 at age 54 and will be 5 years clear this August - without surgery, so I consider myself so lucky! I've still been having regular Endoscopies for surveillance purposes. They also scanned me (alternate CT & PET/CT) at intervals for the first approx. 2 yrs. to check progress as, initially, they thought I would ALSO still need surgery].
My treatment - I had 2 x 3wk. Chemo cycles BEFORE the combined Chemo/Radio - which entailed a further 2 x 3wk. Chemo cycles, alongside 5 wks. of daily Radio. BUT, EVERYONE's CONDITION IS DIFFERENT and will need tailored treatment, taking into account any other health factors.
From losing 2 stone, on a Naso-gastric feeding tube for a few months, I'd put 3 stone back on within 2 years! The main thing I have to remember these days, with normal sized meals,is to chew, chrew, chew! - since the scar tissue from the Radio takes up a bit of space inside the Oeosophagus. Bread, toast, etc. still stick sometimes. I also tend to have my drink BEFORE my meals, to reduce any relfux.
I'd say go with the consultants - and go for a specialist centre which deals with more of such cases - even if it might mean the inconvenience of travelling further.
Sorry for length of this post (:). And best wishes for a good outcome!
My advice would be to have the surgery, if that is what the medical team are recommending. I was initially staged as T2N0, but staging is not an exact science and the pathology report following my surgery showed that the tumour was actually T3N1. I won't pretend that the recovery was easy - I lost a fifth of my body weight, and like many others, but not as badly as some, suffered from occasional acid and bile reflux, dumping and fatigue, and still do. But I am generally able to lead a normal active life - play golf, go to the gym, go walking, do the garden, etc. I am 64 and had my surgery 10 years ago.
I was in the same situation as your husband aged 56 over 10 years ago when I was diagnosed. The consultant explained the operation to me and I asked him what the outcome would be if I did not have the surgery .He explained that having the operation was the gold standard for a cure and not having it I would be dead in 18 months. I know that's seem blunt but I appreciated his honesty There are a lot of patients out there you would love to have the operation but are not offered it because of other complications. Its a difficult road but your husband should gain a good fitness level after 12 month to 18 months. He will never regain is previous weight but will settle to a new fighting weight. The other main challenges you face are sleeping propped up and remembering not to eat too much in one go that still catches me out now . It is still a very good life with a lot to look forward to.
I can't thank all of you enough for taking the time to respond. This has helped so much. I feel that it is very clear that he should have the surgery and that we will just have to travel this road one step at a time.
aussiemummy - one step at a time is a good approach .I was in denial about having the op to begin with and v worried .But actually it was loads easier than I expected .
My recovery was good and I don't think people really believe now that I had cancer and such a big operation .I think I'm like Magpuss now - a bit of dumping if I eat too much ,especially sweet stuff and extra pillows . I'm overweight .
I had a feeding tube ( into my jejunum inserted during the op ) and used it for a bit after the op .I could not have imagined this beforehand but it was ok ,amazing what you get used to .
The whole thing is such a shock but you'll both get there .And I do believe it's worse for friends and family .
I am so glad you made the right decision..........the alternative is almost certain death; particularly as you have children.
Just like the folks above I have the daily struggle with all of the usual ghastly side effects but with time and practice they become routine.
My Ivor Lewis was aged 47 when my son was only 2 years old, subsequently I have enjoyed an extraordinary 819,936,001 and counting, additional seconds of life, every single one of them precious. That's 26 years in case you haven't a calculator handy!
In the last week I have mown 20 acres of brush-land and only the British weather will stop me going camping and boating this summer.
As for the steps on the road ahead this site exists to support and guide you and yours.
Hope you won't mind me saying this gutlesswonder but I don't have a 'daily struggle' with side effects. I have the occasional bout of dumping - usually, if I've eaten a little too much. Other than that it's just a matter of remembering what I can and can't do i.e.- can't lie down in bed, may feel tired and need to sit for a while after a meal, and can't lean forward or bend over for some time after eating. I know that I'm lucky and that it isn't the same for everyone - just wanted to say that the side effects (in my experience) don't always result in a daily struggle.
Have to add - I do struggle to mow my 'lawn' (looks more like a meadow at the moment) so 20 acres!😧 - I'd be floored at the thought of even starting that. Definitely not a job for a 'gutless' wonder!
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