Total oesophagectomy after having metal work from osteosarcoma of the spine go through oesophagus

I'm new here and wanted some advice regarding my surgery on 22 February. This is a bit of a long story but I'll try and make it as brief as I can.

I'm 42 with 2 young sons. At the age of 20 I was diagnosed with osteosarcoma which is a form of bone cancer. I've had chemotherapy, radiotherapy and surgery on my spine which has involved a lot of metal work. I last had surgery to remove a tumour from my thoracic spine in 2009 however in 2015 I started to have tremendous pain in my left shoulder along with haemoptysis after slipping in my kitchen. For four months I was in hospital being investigated until I had a massive aneurysm, luckily hospital staff saved my life and I was sent to St George's in Tooting (in the U.K.) and had an emergency stent. Whilst I was on ITU I was told that some of my previous metal work had caused the aneurysm and also a screw had gone through my oesophagus.

Ever since August 2015 I have been solely peg fed and tremendously ill. It seemed that there were no surgeons who wanted to operate on me due to my previous aneurysm and to the high risk nature of the operation. But I'm now in the position where I have a team of surgeons including orthopaedics, ENT, vascular, cardiothoracic, ready to do the operation of taking out and replacing the metal work and removing my oesophagus. As I have been left for so long the surgeons feel that my oesophagus has become so mushy around the screw the hole would not be able to be repaired following removal of the screw and therefore total removal of the oesophagus is my only option which will leave me unable to eat or drink or swallow my saliva. I was given 2 other options, one was removal of metal work with removal of my oesophagus, a stomach pull up and removal of my voice box which would leave me with a tracheostomy and unable to speak, or the second was to do nothing and most likely only survive for 1 to 2 years due to sepsis in the cavity in between my rib and chest wall area.

So as you can see, I've had a pretty tough couple of years. I've had cancer and survived!

My family life has suffered tremendously. My sons miss their mummy and my heart aches not being with them. My marriage is not in good shape and my whole family have literally been on tender hooks waiting for an operation where I can have some kind of quality of life back.

Is there anyone out there that has had their oesophagus removed due to some kind of trauma? Is there anyone that has had their oesophagus removed and has to spit out their saliva due to not being able to swallow?

I am extremely terrified about my impending surgery. I simply cannot live any longer with pain and coughing up blood all of the time. I'd be grateful if anyone can let me know if they have anything similar happen to them?

Thank you for taking the time to read my story.

13 Replies

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  • hi, l know there will be others on this site who can probably answer your question better than me, but I just want to say I wish you all the luck in the world and I'm sending you my love and prayers

    regard

    Edwina xx

  • Thank you Edwina.x

  • Im sorry i am unable to help with advice but i am sure someone on this site will help but you are in my thoughts and i am sending you love and prayers wishing you all the luck in the world

    Margie xx

  • Hello, I'm afraid I don't have any experience to be able to help - my operation went well with no complications - so I am sorry to take up your time. But I just had to reply to your story, you have been so brave, like the others I wish you well and will be thinking of you, I will not be able to forget your story. love and best wishes to you and your family x

  • Hello, I just wanted to say how brave you are,I'm sure someone will be able to answer your questions better than me , but like everyone else I wish you all the luck in the world, hope everything goes well,sending you my love and prayers.regards Angela xxx

  • Oh good Lord what a terrible time you've had and are still having .My heart goes out to you .

    We have amazing surgeons in the UK and I know it's a cliche but you must be guided by them .They will do their very best ( and then some ) for you . Your case is complicated ( to say the least ! ) and your team have all the facts so none of us are in a position to comment on the specifics .

    I know that one of the volunteers here who often posts ( and will soon be along I'm sure ) had a ruptured oesphageous and might have some comments .

    Try and keep strong .Go with your surgeons advice and know that you will have the very best of care . Have faith in the resilence of the young and that your sons will thrive .They know you love them .

    Sending love x x

  • It's very kind of you to comment. Sometimes you just have to have faith , don't you.

  • I don't know if it could be possible for you in the future but it was reported in Lancet that a young man in the US has had the first ever oesophagus reconstruction in a human it was carried out by Professor Kulwinder Dua in 2016. He did say the use of this procedure in routine clinical care is a long way off. But there is hope and you are still a young woman and from reading your post a very brave and tenacious woman. I cant imagine what you are going through right now but I hope and pray it all goes well for you.

  • Thank you for your reply.

    I should just say that I'm a woman, but that's ok.

    I know they're always coming up with new ways to do things, so I was hoping oesophageal reconstruction was in the pipeline. I'll just have to see what the future holds. I just have to have faith.

  • So sorry I have edited my post now. With faith comes hope I will be praying for you.

  • Hi my partner had Ivor Lewis op July 2016 but unfortunately suffered lots of complications straight after resulting in him having his whole eoesphagus removed. There wasn't enough oesophagsus left to join up with his remaining stomach(only very small part left anyway) so they bought throat/oesophagsus out into side of neck. He had a tracheotomy also but not removal of his voice box, so after some time he was able to speak again. He is now peg feeding and has a stomach bag on his neck for saliva and any fluids to go into. My partner also has arthritis of the spine which occurred before oc diagnosis and after spending six weeks in ICU with Ivor Lewis op he developed drop foot so now has limited mobility. This has been a total life change for us and every day seems to bring new challenges but we try to remain positive and make the best of each day. I hope this is helpful to you knowing someone is in a similar situation as yourself and please contact me if you want any questions answered or just to chat anything really, to help this road you have to take. Virtual hugs lots of! Jinx

  • I can't add anything that others have not already said.

    My thoughts are with you and your family, and I hope and pray that you will find if not a solution, the strength and support to face each day and new challenge.

    We are also fairly new to the site, but have found people's support and encouragement a great help through my husbands recent Ivor Lewis . We will be thinking of you, and please let us all know how things are going. xxxxxxxxxx

    Also thinking of you too Jinx58 and your partner xxxxx

  • My oesophagus split in the middle of one night and I had surgery to repair it. Sometimes an oesophagus is removed because of damage caused by the swallowing of dangerous chemicals. So the answer is yes, surgery does take place to repair traumatic injuries.

    A period of not being able to eat or drink is normal. In my case I could only suck ice cubes for a while. But this was 15 years ago.

    So an oesophagus can be repaired. Normally when it is removed the reasons are because of cancer and a section of it is removed and the stomach 'pulled up' and joined to the remaining stump of the oesophagus at the top. But there are people on this forum who have had a tumour removed by a vertical removal of a section of the oesophagus. It is rare though. And this will all depend on where the problem is located; the higher up towards the throat, the more difficult this can be, and it does sound like this may well be an issue for you. There has to be healthy flesh to allow the surgical joint to heal.

    There are experienced surgeons who can do this, and St George's Tooting will be linked up, probably to St Mary's Paddington where Professor George Hanna may well be the surgeon to whom they would refer for advice and guidance on these difficult cases. So I think that in your position I would ask whether they had consulted a specialist Upper GI surgeon like George Hanna. This kind of surgery is the sort where asking for a second opinion is normal and very valuable for all concerned.

    Surgery does depend on an assessment of the health of your oesophagus and indeed the rest of your health, so surgeons will naturally be cautious in their approach. The risk of infection is indeed a serious issue. And if there is a wound in your oesophagus, feeding by mouth will risk it passing into the chest cavity and causing major problems.

    Sooner or later, surgical intervention may well be necessary, but something equivalent will have been done before in their exoerience. The problems will be how the surgeons get access to that part of your body, how will it will heal afterwards and the longer term effects on your voice, digestive system and so on.

    There are lots of people alive and well who have had their oesophagus removed. A patient has to give informed consent to surgery, and this does involve knowing the background and the risks, but try not to get too worried about the mechanics of the surgery. They would not be suggesting surgery unless they had assessed everything properly, and to some extent you may have simply to trust their judgement on the technicalities of what is possible.

    I do hope your situation will improve soon.

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