Epiglottis cancer

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Hello Everyone 

I have been diagnosed with T3 cancer in Epiglottis.  Consultant has advised surgery due to it being in cartilage and stating Radio and Chemo not effective in this.  Surgery is booked for next Thursday 23rd May.  I am just worried about what comes next as it all depends how much they have to remove as to wether I will ever be able to eat and drink properly again because of lung aspiration.  Has anyone had experience of this.  Thank you for reading.

  • Hello St Bernard Lady, I don't know anything about cancer in this area but have had cancer in the head and neck area three times with the removal of the voice box being the last which is not far from your area, I'm guessing. This is the same sort of thing when they said I had a tumour near/on my voice box, they said we cannot give a guarantee what they find once they open me up so a lot of it was playing by ear.In the end my larynx/voicebox was cancerous so it came out, so i think this will be the same with you and will not know the full story until they have operated and what is needed to fix the problem. I'm sure there are ways around the eating and drinking long term but you may need a P.E.G feeding tube while you recover. I hope this is of some help to you, best wishes for Thursday and hope all goes to plan, remember these consultants are very good along with their teams. Take care .

                                                                                    Chris x  

    Its sometimes not easy but its worth it ! 

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  • Thank you Chris, how are you getting on without a voice box and can you eat ok?

    Mo x

  • Hello Mo, I'm doing ok now thanks, it took a while to adjust but in a way, I knew what to expect and prepared myself before my laryngectomy as best I could mentally. Unfortunately, I cannot eat solid foods or thick liquids so use my p.e.g feeding tube to syringe food supplements in. I can drink thinner liquid like water, tea, coffee, beer etc so it's not all bad. The reason I cannot swallow is not because of my voice box removal, it was because of nerve and muscle damage in my two previous operations, most laryngectomies can eat after surgery. Hope this is of some help, here if you need more help or advice, take care.

                                                                                Chris x

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • Just had my surgery cancelled they now want a PET scan before they will undertake any surgery, bit worrying as they did say there may be something in my lung or it could be Bronchial scarring.  Cant help thinking this is worse than what I thought.  Wish I could put it out of my head for a while.

    Mo x

  • Sorry to hear this Mo, sometimes they will do more scans or tests to make sure they are clear in their mind the best way to deal with the issue, it sounds as if they have been doing pre-op checks and need more clarification. I know its a pain as we get psyched up for it only to be let down. Let's hope you don't have to wait too long, Take care.

                                                                              Chris x  

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • Hi Chris Got a PET scan in the morning, it seems that they wanted to do this before surgery as there is a strong chance there is a lesion in the Apex of my right lung as well so they want to see if it is another primary or secondary tumour.  Bit worried about this, they did mention seeing something on the CT but it had not been fully diagnosed at the time so it looks like I am in for a rough ride.  Probably self inflicted as I have been a smoker.  I guess I have been trying to look on the positive all the way as I was convinced the throat was an apthous ulcer from my Crohns and it is Bronchial scarring on the lung.  Oh well another new experience in the morning becoming a Glow Mo.

  • That's good Mo with the scan being so quick, it makes sense for them to be absolutely sure before they operate. I used to smoke also and drink but I never thought of cancer and to be honest I had never heard of mouth/oral cancer,Disappointed this was back in 2008. I know what you mean by "glow" as I had a few scans and xrays in a three year period. Good luck with the scan tomorrow Mo.

                                                                                                   Chris x   

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • Seems like its taken forever but today I got a call with new surgery date 3rd July.  Quite pleased with this as its my birthday on 27th June so at least I can celebrate before going under the knife and entering the unknown.  Apart from the frustration of the wait all is good, hope you are too.

    Mo x

  • Its good you got the new date Mo and you can celebrate  your birthday before hand . Yes waiting is the worse best to try and keep busy . Good luck for the 27th and let us knowhow things went . Best wishes ,take care ,be good .

                                                                                Chris x

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • Hi Chris, well surgery done and not as extensive as they first thought.  I am sore but can eat and drink but needful to be careful.  Was a bit upset as they changed the plan on day of surgery and just removed the lesion and sent it for histology so I still don't know if I should be dancing in the street cos its gone or looking forward to some radiotherapy, not.  I have written a blog on here as a reminder of what has gone on and also because I found very few others that had experienced cancer in the supraglottis on any forums.  Now waiting for results once more.  Hope all is good with you and anyone else fighting the good fight.

    All the best Mo x