Totally blocked eosophagus

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Hi, I’m new to the group.  I finished my treatment, both chemotherapy and radiotherapy, last August. After my last scan it showed that the tumour is ‘inactve’. However, the tumour is high in my oesophagus and has left me totally blocked (even water cannot go down).  It could not be operated on as it is too high in the oesophagus, I cannot have a stent for the same reason. Dilation isn’t possible because of the danger of perforation.  My oncologist says I may have to live with it and be on a feeding tube for the rest of my life.  I have asked for a second opinion as, surely, I can’t be the first person to have their oesophagus totally blocked ?  Is there anyone in the group who might be able to help who has been or is in the same position as myself ?

  • Hi, I’m really sorry you’re struggling. I can’t give any advice, but hope by answering it pushes it to the top of the list to help others see it. My husband also has oesophageal cancer (T4aN2M0). Have they offered you a stoma in your neck for saliva and to give you the sensation of chewing food without it getting stuck? It was a possible option for my husband if they disconnected him, thankfully they managed to avoid it. Hope you get some helpful comments. Take care. Steph

  • Hi Forkie,

    Thank you for taking the courage to reach out to the group, I am sorry to read, that even after treatment you have not manged to have the tumour reduced enough, to make eating more comfortable for you. 

    You mention you have asked for a second opinion, has that request been granted for you?  

    I can't really give much in the way of guidance on your situation, as I have not been in the same position or made aware of anyone with the same situation as you, but it may be wise to give the Macmillan Team a call, the number is in my signature. The guys on the other end of the phone have a wealth of knowledge and are possibly best placed to to give you the support you need to try to help you try to find some way of reducing your tumour further still,  it may be, that it is not possible, but, they will hopefully be able to point you in the right direction. 

    Being as the tumour is causing such obstruction, do you mind me asking how much difficulty you had swallowing just before diagnosis? 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Goor morning Lowe

    ,Thank you for your message and the helpful information. I refer to your last paragraph;  My throat has been permanently blocked since the NG feeding tube was removed prior to my last course of treatment. (I had a RIg feeding tube fitted instead of the NG).

    I could swallow prior to diagnosis but experienced swallowing difficulties very soon after. That difficulty went progressively worse despite two rounds of chemotherapy which reduced the tumour by 50%.

    Also, since my blocked throat, I have problems with secretions but am having daily injections to help with this. However, the build up of the secretions are most unpleasant and I try to ‘get rid’ of them in the best way I can (fingers down my throat several times a day.…sorry !)

    I have asked for a second opinion and if I have not heard anything soon, I will be pursing the matter.

    Kind regards - Forkie.

  • Hi Again Forke, 

    Don't apologise for your descriptive information, sometimes the only way to say something, is how it is. 

    I think you are right in asking for a 2nd opinion, and to see if there is any other treatment that can further reduce the size of the tumour,  I do hope you get some positive results from your questions. 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Mine is totally blocked also, since August 2022. Still dream about coffee and other things. Worst part is the secretions, which are a nuisance. 
    Thanks for sharing your story it is good to know others understand. 

  • My tab is railroad because that is the name of the procedure that has been considered as an option. Like the  channel tunnel the blockage is approached from both directions. The statistics are not good, can rupture the walls, most have to be redone, and the effect can be minimal for any level of swallowing. 
    Would be interested to hear of any successful procedures. Average in Devon and Cornwall is one per year, so it doesn’t happen often. Ther is a stretching procedure which is more common, however it is only offered when the condition is not too severe.

  • Hi Railroad.  Thank you for the information - very interesting.

    With regard to the secretions, I am on daily injections of Glycopyrronium which helps. Prior to this I tried Scopoderm patches

    (for travel sickness) which did not work for me at all. 

  • Hi again

    Found something on the internet about laser treatment, but not available here

    . I have also had two lots of radiotherapy in the last 4 years as it was previously a pharyngeal tumour. Was told that it was unrelated to the oesophagus but who knows.

    Thanks for reply.