Re total larangectomy for recurrent cancer

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Hi to all 

I have been told I need a total larangectomy for larynx cancer on other side possibly also same side but not as bad as last time ,having had radiotherapy and laser for previous cancer .this is my only option .

i have been reading and am worried as always says there are lots of problems due to previous radiotherapy and surgery’s on tissues now I am wondering to leave this I do not want to suffer anymore .

i have a pre op tomorrow and the surgery if pre op goes well next Saturday

urgent advice needed I don’t think it’s worth putting myself or family through anymore I am 59 now 

had gone back to work and driving now it’s all happening again 

prayers and love to all going through this nasty c word 

    1. Good evening Paulineg1, I'm sorry to hear the cancer has come back, i remember your name from previous posts in the head and neck group on here. I had three big operations in three consecutive years starting in 2008 with floor of the mouth (followed up with radio and chemo)then lower jaw cancer in 2009, and lastly removal of my larynx in 2010 aged 51. During this time i only had one skin graft that died but the second one took so like any operation you can have issues . Im now free from cancer and it was 15 years ago that i had my first operation etc. It will take quite a while to adjust to having no voice but you will be well looked after and maybe have other ways of communicating, its also very surprising how well everything heals up and settles down and you should lead a near-normal life but with no speech. Between you and me i would go ahead with the operation as your quality of life will not suffer that much. Stay positive and good luck with your pre-op tomorrow, all the best, take care.
    2.                                                                           Chris .

    Its sometimes not easy but its worth it ! 

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  • Hi there Chris 

    firstly Thankyou for replying ,and also that you remembered my name from previous .

    I am sorry you to have had recurrence in this to and three times but also so pleased you have got through and all this time later donig so we’ll and still positive.they have said I will have muscle taking and used as flap because of previous radiotherapy and also will fit a voice thing but I know how good that is , I guess just feel every time I get up somthing kicks me down and I guess it’s so disappointing and my children are great but so upset . 
    I will go to the pre op and talk with them as also they have found a Meningioma on a scan by chance so I’m waiting to go to Oxford for this and was meant to be two week referral back in March and only just got told appointments will be one sec and one in January not sure why two appointments but this has also upset me like this cancer been tellnig then since January got a two week referral off doctor so that was good but only now are they saying it’s back I don’t get it as last biopsy scan  I was told was clear that was only months ago now I feel no trust in medical 

    sorry long message but wanted to explain why I feel so against having it done to many mistakes don’t make u feel safe 

    take care to and thank u 

    pauline 

  • You are welcome to my advice, i was told that this was my last chance to stop cancer, thankfully i believed in my consultant and he believed in me. Personally, i have had no mistakes, ok it returned but its not the consultant's fault it just just bad luck. I also would advise you to chat with a counselor who will help you, i was on anti-depressants and counseling at one time because it got too much for me to take in. We all have choices, thankfully i took a chance and my consultant backed me all the way and i live to tell the tale. How did you get on. Take care.

                                                                                                Chris

    Its sometimes not easy but its worth it ! 

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  • Thank u again 

    and u to have been through so much , but gives me hope as I know this is also my only option to rid the cancer like you said . I’m glad u had a consultant that was there for you and had your back and supported you all the way . This does help greatly , at the minute my own hospital has not sent over my details to the hospital I am having it done which has delayed op for Saturday and time going over to the other hospital twice these kind of mistakes make you feel anxious now I got to wait for larangectomy nurse to contact me about the situation 

    regards Pauline 

  • I know that you you had a lot of trouble before which i agree does not give you much confidence let's hope you get better treatment this time around as we are all entitled to be treated fairly. You can also post this in the head and neck group as there are people on there who will maybe have help and advise you, please let us know how you get on, Wishing you all the best. 

                                                                 Chris x

    Its sometimes not easy but its worth it ! 

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  • Hi there Chris 

    thank you for the reply 

    yes I had lots of trouble before , and let’s hope once they get my notes over all will go as smoothly as possible .

    I will have another look on head and neck lim sure I’m not the only one having problems 

    yes I keep updating wen I know more 

    regards Pauline x

  • Hi there Chris 

    just need some advice 

    I have not had op yet but went to speak with consultant about second opinion been told my only other option is second radiotherapy for six weeks targeted to small area and lower dose but may come back or not work and also can cause more damage so later may not be able to have the larangectomy hard decision but there calling me Monday to see wat I have decided any help advice I wud be greatful 

    regards Pauline 

  • Good evening Pauline, it is a hard one to call, i was offered more radiotherapy but my consultant told me if it did not work then it could be harder to do a full laryngectomy due to the damage plus i was at the stage where it kept coming back so i opted for the operation, thankfully it did the trick. I know nobody wants to lose their voice but i have managed to cope ok since 2010 its just the first year where you have to adjust to the stoma ( hole in the neck) as its your new way of breathing as the nose and mouth will become inactive for breathing. Was your consultant confident that the operation would work, i know they cannot give any guarantees. Please re-post if you need more help or are not sure about anything. I know how you are feeling and i wish you all the best for Monday where you could ask what the percentages are for each procedure. Take care.

                                                                     Chris x

    Its sometimes not easy but its worth it ! 

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  • Good evening Chris 

    ues like you I have been told the same , if I go for radiotherapy I to won’t be able to have a larangectomy cos if previous damage off it and if I were to have more be worse 

    it’s like there telling me it’s the only choice, if I want it  gone it is really hard Chris , I had thoughts of giving up then denial it’s there at all . 
    but you give me hope as you have done amazing and still coping so well so positive.

    i have read others who are having swallowing problems or other things and must admit has scared me .

     I’m on sick and really want to get back to work but one told me months and another told me could be up to a year . 

    yes they were confident it would work and the best option I asked about chemo or anything else and they said it won’t work on this . 

    the percentage is high for larangectomy but not so for radiotherapy 

    mid there is anything else you can tell me I would be grateful 

    regards pauline 

  • Good evening Pauline, if your swallowing is ok now then the laryngectomy should not affect it , my swallowing was damaged during my two previous operations plus the radiotherapy, i can still swallow thin liquids so at least i can have soups, coffee, and tea, etc, I would agree on it being a year before you can return to work full time so you will be entitled to benefits from the government. Its always scary but rest assured your consultant and their team will be well-experienced. I always say the first two weeks are the worst as this is when you realise you have to lead a slightly different way of breathing and communication but it will all fall into place like a jigsaw. When i had mine done we had just bought our first computer and mobile phone although nothing like the phones we have now as technology has moved on so quickly, this also applies to the way operations are carried out as I'm sure they have made progress on operating procedures and recovery rates. Best wishes.

                                                                            Chris x

                                         

    Its sometimes not easy but its worth it ! 

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