Larynx cancer

Affected by larynx (voicebox) cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

Epiglottis cancer

St Bernard Lady
Posted by

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.

chris2012
Posted by

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 !                Click here to find out more

St Bernard Lady
Posted by

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

Mo x

chris2012
Posted by

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 !                Click here to find out more

St Bernard Lady
Posted by

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

chris2012
Posted by

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 !                Click here to find out more

St Bernard Lady
Posted by

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.

chris2012
Posted by

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, 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 !                Click here to find out more

St Bernard Lady
Posted by

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

chris2012
Posted by

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 !                Click here to find out more

St Bernard Lady
Posted by

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

chris2012
Posted by

Hi Mo , great to hear from you , and that the surgery has been done and you can eat and drink with care , its still a good sign . Perhaps once they opened the area up it was not as bad as thought . Really hope that its all good and no further treatment is needed so good luck with the results . All good for me thanks . Fingers crossed for you , all the best ,take care .

                                                                       Chris x

Its sometimes not easy but its worth it !                Click here to find out more

St Bernard Lady
Posted by

Hi Chris

Unfortunately they didn't get it all so they are going to try again with another Trans Oral Laser resection taking just a bit more so will be back in surgery 2 - 3 weeks, bet it will be hell this time as I seem to have got off quite light with the first round.  He said that we can hold the Radiotherapy card to play later if it comes back as we only get to play that card once then we are down to voice box removal so happy to go along with little snips and hope they get it.

All the best Mo xx

chris2012
Posted by

Hi Mo , sorry that they did not get it all , I know what its like when it comes back . Its better that they have found out so early as it gives them a better chance of stopping it , as you say holding back on the radiotherapy is a good option should it be needed later . Lets hope they manage to stop it this time , all the very best for the next round ,take care .

                                                                                    Chris x

Its sometimes not easy but its worth it !                Click here to find out more