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My mum (54) has been diagnosed with locally advanced laryngeal cancer (T4) which involves 2 lymph nodes and is butting up against carotid artery.
She is now faced with deciding between 2 treatment options: 1) total laryngectomy followed by adjuvant chemo & radiotherapy ; 2) intense chemotherapy and radiotherapy. Option 1 is considered more curative. Option 2 runs the risk of recurrence, but her larynx and speech can only be preserved this way. Incredibly difficult decision to make.
This is causing a lot of emotional turmoil for my mum and our family, any insight or comments from anyone who has gone through this would be much appreciated.
Hi sorry to hear about your Mum, I was diagnosed with a T3 larynx cancer 4years ago at 73 and had chemo and electro therapy unfortunately after the treatment it returned and after 8 months and I had to have a total laryngectomy 3 years ago.On reflection I think I should have had the laryngectomy first it sounds very scary but the op was not as bad as I expected they fitted a speech valve that enables you to talk using your oesophagus and mine works quite well. Tell your Mum to take it day by day and try not to worry and honestly it worked for me she must be very worried so she has to have faith in her consultant and his team she will find them very kind and understanding and don't be afraid to ask questions.
Best wishes my thoughts are with you
Hello missecave, I can quite understand how hard this decision is , I had cancer twice before it came back a third time affecting my Larynx so I had pretty much used up all my dose of radiotherapy after my first operation ,so the options I got were to give a little more radio and chemo and see what happens or to have the voice box removed , the consultant gave me two weeks to make up my mind but I gave him the answer after a week and decided to have it removed . He did say he will not know for definite until him and the E.N.T consultant preformed the operation , unfortunately the cancer had spread to the larynx so I came around from the operation unable to speak . I agree with the other comments about the operation not being that bad recovery wise it just takes a while to adjust to the new way of breathing and the baseplates and filters as this takes place of the mouth and nose . Again lady luck was not on my side when it come to trying the speech valve as due to the two previous surgeries my nerves were damaged . I have never regretted having it done as thankfully it finally stop the cancer returning where I have been cancer free since 2010. The only problem with radiotherapy is the side affects afterwards as it can damage but if it works your mum should still be able to speak . As think with me I only had the one option due to my history and the consultants agreed , remember they will only remove the larynx as a last resort . The other reply is also very reassuring to read as it goes to show some sort of speech is possible in the future and do sound very good . Your mum will still the same mum which ever choice is made so I wish your mum, yourself and the rest of the family all the best ,take care .
Hi, my partner (55) was diagnosed with cancer of the larynx in June last year. He was also recommended having his layrnx removed and had the operation in September. The operation was lengthy (17 hours) and complicated, the result being removal of the larynx, part of the soft palate, part of his throat and his lymph nodes. Following the op he had 30 sessions of radiotherapy and 2 of chemo. Total time between the op and treatment was 3 months. Recovery is going very well, he has learned to talk again with his valve (intrduced during the op) and his speech is excellent. We are very poisitive this is just the beginning to a new life. We are enormously grateful to the outstanding ENT team in the MRI for saving his life.
My best wishes to you and your mum, I know this is a very difficult time.
Hello newlife17 , thanks for sharing this story and well done to your partner in recovering from the surgery and treatment , these Maxillofacial and ENT consultants are truly life savers . All the best for the future ,take care .
Dear chris2012, Thanks so much for your kind words, we certainly are in the best hands, Best wishes to you, take care.
Thanks for the kind messages:)
Chris- it sounds like you've been through a hell of a lot and you've come out the other end with life, fantastic.
Just an update - my mum is going to have her operation this Monday, we cannot quite believe it's happening already. The MDT meeting finally decided that having the operation is the only way to cure the cancer. It will be an 8-10 hour operation: total laryngectomy, removal of 2 lymph nodes and the gullet and peeling of carotid artery; a Plastic Surgeon is helping the ENT Consultant by taking a muscle from her thigh to reconstruct her gullet. Speech is the last thing on our minds at the moment.
This is 100% the best decision for my mum, pretty much everyone we've spoken to (professional or not) has said to have the operation in her case as it's the only way to go for the cure. You are right she will always be my mum no matter what happens. Fingers crossed for the big day on Monday, her ENT Consultant does not usually operate on a Monday, but he is doing her as an extra as her breathing has become more laboured of late. He's really going the extra mile for her we are so lucky, NHS staff have all been brill.
Take care x
Any comments or insight into what the recovery is like immediately after total laryngectomy would be appreciated.
We’ve been told a 2-3 week hospital stay but could be up to 6, not sure what to expect
My stay was 8 weeks! But that was very unusual, other patients tell me that 2to3 weeks is the norm. I had complications with leakage, I guess I was just unlucky.
Now 18 months on, fully recovered with good voice, so good luck with your op.
Hello missecave , i would say the first week is the worse when we as patients are getting used to breahing through the neck rather than the nose plus the suctioning can that is needed to clear the mucus at the beginning , once that is done its not that bad and i did not suffer hardly any pain that i can remember . The length of stay in hospital depends how well everthing heals and there are no leaks when the swallowing test is done . I stayed in for just over 6 weeks but this was not my first operation as i had two previous ones on the floor of the mouth and lower jaw bone so my healing took a bit longer as the radiotherpy from my first operation damaged skin tissues and muscles . Hopefully the recovery will be quicker for you end . Take care .
Hi my partner had a total laryngectomy last year it was a very long and severe operation he had it because the cancer had returned and as he had a lot of radium and chemo the first time around this wasnt an option in his case it just takes a while to get used to everything but just keep asking the team thats going it all the questions u want to and don't b afraid to ask cos no questions r silly questions
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