Oesophageal Patients Association
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New to this :( Oesophagectomy and Type 1 Diabetes

My 39 year old husband has recently been diagnosed with Oesophageal Cancer and is having an oesophagectomy on 12 Sept. We are terrified. He can't process it in his mind - he's seriously considering not having the op and letting himself die from cancer instead. That is not an option from my perspective- at all! Part of the problem is that he's a Type 1 diabetic and he can't see how he'll be able to manage it after the oesophagectomy. Is there anyone on here with experience of that? He's scared of 'dumping' as he has a busy job, travelling and meeting customers in Europe; he's scared of being in pain; he thinks the cancer will come back; he thinks he'll have constant hypos; and he thinks that maybe it's all just not necessary. This is so so hard - and I don't know how to make it better.

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Hi Karen

I was 57 when I was diagnosed. I worked in Kuala Lumpur with a job that required constant travel all over the Far East and Australasia. I had the operation in May 2013 and by October 2013 I was back at work full time, doing the long haul travel. I got back to work gradually and the dumping was no fun (and is no fun) but I managed to keep it under control. I retired at the end of March 2014, which was roughly what I had intended to do. Our last trip, before coming home, was Kuala Lumpur-Adelaide for a long weekend at the Third Ashes Test and I was OK doing a crazy trip like that.

There is hope.

There are many survivors of the cancer who live close to normal lives, surviving 20 years plus after the op.

Has he called the OPA helpline or come to one of our meetings? I am happy to talk to him any time as would our helpline

Haward

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Thank you Hayward, that really helps. He hasn't contacted OPA himself yet, I'm working on getting him to do that. I'm so pleased you managed to continue travelling too. Thank you so much for replying, it does help - it's all just very new and very scary, especially as he's really well just now so going for the op feels very weird.

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any time. And if you need any more support on the travelling stuff just let me know. Haward

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Hi karen,

I am so so sorry for your husbands diagnosis ~ a big shock for both of you.

We don't have experience of the diabetes, and hope others on this site will be able to help, he should also get support with this from a hospital dietician.

My husband had an oesophagectomy in January this year, and he also went through the same emotions as your husband, initially refusing chemo and surgery as he was so concerned of the side effects, so understand his concerns. Dave rarely suffers from hypos or dumping, although has them on occasions, but does suffer from other symptoms that are difficult to learn to control.

The op is a HUGE one and life changing, but can be learnt to live around,and as you say the chice to do nothing isn't an option!!

On the plus side, Dave was fairly quick to recover phsically, and went back to work just 4 months after surgery, and back to work full time after 5 months. Everyone is different, but your husband is young, and if he can work on being as fit as he can be before surgery, he is giving himself the best possible chance of reccovery ~ maybe something you could both work on as a team.

The best of luck to both of you on your journey, and I'm sure you'll get a lot of advice and support from Health unlocked!!!

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Thank you so much for your reply, I'm glad your husband recovered quickly. Mine thinks he'll be back at work 4-6 weeks after the op as it's being done by keyhole and there is no chemotherapy required (that we know of - tbc after the op), but I don't know if that's realistic.

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Definitely not Karen!! Keyhole and no chemo will all help him recover quicker though xxx

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hi karen ,

what a very frightening time you are going through . its not suprising you are feeling like you are . i hope someone on here may have the experience to advise you who may have diabeties and has sucessfully coped with life after the op .

its very hard when you are the partner and have to cope with watching someone you love going through life changing conditions . you cope with your fears and your partners , being the one who is there in the middle of the night and first call for care physically and emotionally .

i hope your husband does choose the operation , and the chance of survival and a future , it may be a altered life but believe me you can get a new normal . my husbands and my life changed overnight from fit indipendant ,own buisness , lovely house we worked very hard for , to dissabled ,unable to work and having to move to adapted small house . constant hospital visits and new medical conditions added yearly it seems . you do cope and find a new normal , and i never thought we would get to this stage,as my husband was of the same frame of mind as yours is now , he was your husbands age too .

if you are in the uk there is good support for cancer here and you will not go through the journey alone . this site has been such a support for me now i am needing support myself ,there are a lot of posts on here from people who have said they have got back to the things they loved and work , cancer support will have seen this reaction from people too and perhaps they can encourage your husband in these first stages as well .

wishing you posative healing thoughts ,

f

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Thank you so much for replying, I'm sorry to hear that your husband continued to have problems. Do you mind if I ask if that was related to the surgery or was it something else? Being the partner is hard - I'm trying to help (and think I am most of the time) but I think sometimes I say the wrong thing too :( the info on health-unlocked and OPA is useful though.

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Hi karen ,

no i dont mind you asking , i am on this site for my own condition , ,i dont have cancer but a compressed oesophagus for other reasons . my husband became dissabled following an accident ,sorry that wasnt very clear , he has been through a lot of surgery and has developed other conditions as a result of an autoimune reaction that kicked in .he also suffers dumping from gallbladder removal , its very inconvienient but you do learn to cope .i was just sort of trying to say that even if life does change beyond anything you considered as a future , you do cope and find a new normal .

after saying that ,so many people on here have got back to there normal life after surgery ,as did my mum now 84 who had advanced colon cancer ten years ago and my dad now 91 who had throat cancer thirty three years ago ! my dads life is music and he sang beautifully while he played his piano . he couldnt sing again after surgery ,but could of course still play his piano ,the rest of his life remained just the same as before cancer and he has enjoyed watching his five grandchildren and now great grandchildren growing up . it sounds like your husband is now accepting the operation which is good ,and no we dont always say the right things and sometimes there is nothing we can say, but in my experience a lot of the time just being there is enough .

best wishes f

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Hi Karen my name is bob, im54 years old and in 2014 Iwas diagnosed with cancer in the liver in 2015 I had a liver transplant in July , whilst still on the mend in june 2016 on my birthday I was diagnosed with oesophageal cancer , after 3 months of kemo therapy in November had a oesaphagectomy I was in hospital for about 19 days at home was a struggle the first few months but your body will adjust as time goes bye , tell your husband to think of the positive things , he will do fine . It's a big operation as we all no , he will get over this he can do it , goodluck with everything

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Thank you Bob, that really helps.

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I have had type 1 diabetes since I was 10, am 43 now and I was diagnosed with esophageal cancer when I was 32, it was harder to get diagnosed because of my then age so I was diagnosed later. I had the chemo and then the surgery. I do not regret having the surgery as I wanted to have the chance of not living in fear of it coming back and because I wanted to have children (my children are 6 and 7 at this stage).

I personally still have issues with hypo's and I did change my life afterwards but part of that change was that I wanted children and wanted to spend time with them. For me it was a wake up call, my then boyfriend and I were on and off for years, when I got diagnosed we started to plan our wedding and got married 2 weeks post chemo.

Best wishes

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Gosh, this really helps - thank you. I've asked this question on a number of sites and will keep asking so I can hear of people who manage it. I am so pleased to hear that you're 10 years post-op as my husband thinks that the combination of diabetes with the op will mean he won't be here for long. We haven't started our family yet so I'm desperate for him to get through it successfully so we can make the most of our lives ahead. Thank you so so much. Kx

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Hi, I am type ll diabetic and to be honest diabetes was the last thing on my mind. Whilst I was having chemotherapy before the surgery I didn't take any medication whatsoever, it wouldn't of stayed down long enough to be effective anyway. But I would speak to your GI nurse and voice your concerns or oncology if this is the case. As for whether or not he should have the surgery, all I can say is do it, all I could see was if I didn't have the surgery I would die so what was there to lose. You can't change anything so let the experts save you. I couldn't wait to have that horrible thing inside me dumped in a bucket so I could move on with my life. I won't pretend it was easy but just keep going, and as for the dumping you'll get used to it and how to control it and it did get easier. Life doesn't end it just changes. Stay strong and I wish you both all the best.

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Thank you so much - he's so worried about the dumping but what you've said fits my view of things, we'll work out what works for him and what doesn't. We'll definitely get lots of advice from the docs, dietitians and other specialists so we can get our lives back in the future.

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Karen, yes it's a shock to get your husbands diagnosis but there's a couple of things to be positive about. Firstly the fact that he was offered the op is a good sign, secondly at 39 he would have a head start in fitness terms. I was 47 when diagnosed, had a voluntary 6 week cycle of chemotherapy then the Ivor Lewis. It is crucial for you and your husband to maintain a positive outlook as I'm certain that it aids recovery. It's true you both have a long uphill road ahead as there are so many things happen as your body adapts to its new 'pipework', but adapt it will, although how long it takes is anyones guess. In my case it was maybe a couple of years and even now I still have issues related to the operation but seriously, what's the alternative? You have to take the opportunity of a cure that has been given to you as there are many that are not afforded that chance. I'm now 63, feeling bloody old but since having the operation have been around the world including trekking to Everest base camp

( it was quite an experience having the dumping syndrome on the Khumba Glacier) and still ride off road motorcycles in competition most weekends so there is much to look forward to. I wish your husband well in the coming weeks and please let us know regularly how he is progressing.

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