Oesophagectomy Yes or No

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I have 13xm Barrets diagnosed some 8 years ago , my specialist hit me with some options last week that scared the life out of me. RFA , cryo and finally an oesophagectomy to remove half my oesophagus. The oesophagectomy scares me somewhat as YEP I googled it and the prognosis doesn’t look great . Can anyone give me some advice either way please ?

G W 

  • Hi GW, rule number one. DON'T GOOGLE IT! .....lol

    Get your info from the skilled professionals that now surround you, or in this forum from those caring or suffering with the same condition. A sad welcome to the forum.

    You can click on my name to go to my profile and read my story in detail if you wish to. I was diagnosed with stage three Oesophageal cancer. It was in the local lymph nodes but hadn't spread. I am now three months past all the treatment, which for me was four rounds of chemo, operation and more chemo. At the moment I'm cancer free. However the operation took away part of my Oesophagus and three quarters of my stomach. This has caused some issues with eating. I get full quickly and can only eat small amounts. I was quite large at the time of diagnosis 23.5 stones I am now 15.5 stones. Most of the weight loss has been post op but has now balanced out. It's cost a lot in new clothes....lol.

    With regard to your question, I don't know what RFA and cryo are so can't help there, sorry. The operation to remove your Oesophagus obviously has risks and is a major surgical procedure although it seems different hospitals and surgeons can do it differently. Some by open surgery, some keyhole and some by robot. I don't know what determines which you get but I had open surgery and although it's a major operation it wasn't that bad and I was back home after nine days.

    I'm sure your medical team will soon get on to of all your diagnostics and testing and will then be able to guide you better.

    Best regards

    Geo.

  • I googled the NHS website not anywhere really silly ….RFA is they burn the inside of your oesophagus to strip the lining of the offending cells , cryo basically freezes what’s left if the heat doesn’t get it. My risk of developing cancer is higher than most due tithe segment of low dysplasia that I have being 13cm. It’s great that you responded and hope you stay as well as possible 

    G W 

  • Hello GW,

    I had 4 cycles of chemo pre op, an op which was minimally invasive robotic surgery and currently on my 3rd cycle of chemo post op. 
    this forum provides much support and assistance. I found the medical professionals are up front re outcomes and do the absolute best for their patients. I am recovering very well, back at work albeit from home and remotely for meetings. Eating is different post op, smaller and more frequent portions. 
    all the best Paul

  • Thanks Paul , I guess my confession is I actually don’t have cancer and this is the only true certain way to make sure all the offending cells are removed to minimise possible dysplasia which may eventually turn into cancer. I guess it’s scary for us all as you never expect it to be you and it is. Again thank you for sharing , I have a lot of food for thought . 

    G W 

  • Hi GeoFerret

    I’m still pondering over surgery, chemotherapy only or nothing and just let it rip. Diagnosed with Barrett’s some years ago, last two yearly endoscopy showed tumour Stage 2 N0 M0 and surgeon wants to do full procedure same as you. I have hardly any symptoms. My wife has her own heart problems and certainly won’t be able to cope with me afterwards HiHi so now leaning towards not having any treatment but can’t find any details about comparative prognosis etc. Do you have any knowledge of the for or against treatment?

    Big Al

  • Hi Big Al,

    That's a big question and is one that only you can answer really.

    Like you I didn't have any worrying symptoms at the beginning. I went to the doctor's because something just felt off near my stomach when eating. I thought it was maybe caused by my antacid tablets that I had been taking for about two years. I suspected an ulcer or inflammation. The doctor tried me on a different tablet for a week or so but it made no difference so she sent me for an endoscopy. The doctor doing that broke the news of the cancer which was to be confirmed by the biopsy results.

    My outlook after receiving this news and picking myself up off the floor was, how do I survive?  After doing all the test and scans I was told that my way to survival was FLOT chemo, operation and more chemo. Without this my prognosis would be that the cancer would spread and kill me in a matter of months. For me there was no choice other than go down the curative route. I wasn't ready to leave my wife, six children and 11 grandchildren. 

    My wife too is quite poorly in her own right suffering with advanced arthritis. She has been my rock and support throughout the whole journey. Would I have made it through without her, I don't know. I do know it would have been 250% more difficult because some days I didn't want to get out of bed let alone think about cooking, cleaning, washing etc.

    Not everyone has severe side effects to chemo and you might be one of the lucky ones. 

    Please don't give up! Ask your team and Macmillan if there is any temporary social care available to you for the nine months of treatment. If you have the finances available, why not try to hire some help short term.

    I don't know if you have family support available. Could that be an option?

    I don't know if any of this will help but I do hope so. As they say you're a long time dead. Who knows what memories and adventures you will have once treatment is complete. I'm sure between you, you will manage ok. I'm even surer that your wife won't want to watch you deteriorate and leave her alone.

    Best regards

    Geo.

  • Hi Big Al

    Ive just been reading Geo’s reply to yourself,I don’t know your circumstances but I can tell you I have just completed my first 4 cycles of pre OPP FLOT chemotherapy and I think I’ve managed well with the side effects 

    1st cycle neuropathy slight nausea and diarrhoea but only for a couple of days

    2nd cycle slight neuropathy and a little fatigue 

    3rd cycle neuropathy 

    4th cycle has been the worst with neuropathy nausea and fatigue 

    All I know is I came into this community not knowing anything about eosephageal cancer apart from what the medical professionals have told me and I was worried sick, but after communicating with other like minded people affected by this horrible disease I now know there is life afterwards it might be a struggle but it’s going to be worth it 

    best wishes

    Paly

  • Thanks GeoFerret, your comments very helpful. After much thought and reading some of the messages on here it confirms in my mind that having the surgery now, rather than just chemotherapy only, is the best treatment in the long run.

    All the best Big Al

  • Hi Paly

    Thanks for your comments. Having PICC line fitted Wednesday and 1st cycle of pre-opp FLOTT on Friday. Feel reassured by your and GeoFerrets comments. Just have to “man up” a bit LOL.

    best regards

    BigAl

  • Hi BigAl,

    My story is very similar to GroFerret’s I’m just a few months behind him on my journey. When I was given my diagnosis, I was also given only one course of action if I wanted to stick around. I’m just home after my surgery and, although my body feels battered and bruised and I know that recovery is going to take several months, I can also start making future plans for things I want to do with my wife. She has been the best support team that I could have wished for and I hope that anybody who has to go through this treatment is as lucky as I am in having this support because I don’t know how you could cope without it