Second cancer larynx voice box

Hi there to all 

I first had this cancer diagnosed back in 2017 and finished treatment in March 2018 

Five  years on its back on other side

and possibly also same side as last time 

I have have been back and forward since January this year to gp who gave me two week urgent referral 

here we are in November and have been told I need a larangectomy 

I don’t know how to feel at this stage 

except that I really don’t want this done 

and I can’t have radiotherapy because been told you cannot have it again as I had six weeks last time 

I’m also waiting on a different hospital appointment since March this year another two week referral from my own hospital

and the other appointment not  till December and another in February next year 

this is due to incidental finding on my neck scan of a meningioma on my optic nerve which has almost lost my sight in right eye over this period of time 

I don’t know if anyone can give me advice hope 

but at this time I have nothing 

I am off work sick again 

and so fed up 

and to all out there going through this awful journey or supporting someone 

I send my prayers and thoughts to all 

  • I'm really sorry to read your post Pauline and all that you are going through.

    I can't begin to imagine how difficult this past year has been for you but I hope you can take some strength, and comfort, from knowing that the Cancer Chat community are here for you and hopefully it won't be long until some of our members stop by to offer you their support and advice.

    If you'd like to talk any of this through with one of our cancer nurses, you can do so on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very understanding and will do all they can to help.

    We're thinking of you Pauline and wishing you all the best moving forward.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Hi there Steph 

    i would call the number unfortunately with voice I cannot talk on phone so can’t call 

    thankyou it’s been so hard ,and harder when they can’t stage it like last time 

    they won’t know till they open me up apparently and biopsy larynx wen taken out and because of radiotherapy in past seems tissue has been damaged to 

    also not sure if lymph nodes affected in neck again wait and see 

    I had a lovely larengetomy nurse out , yet still I don’t want this done I think the year has taking its toll well over a year since I thought  something was wrong and feel it’s been left to late also how last biopsy on right side was clear and then this last biopsy both sides done and it’s the right side they see something this time and maybe left to makes no sense at all and right vocal cord since that biopsy being paralysed which was not before 

    I know they say it’s a chance at life having total Larangectomy but I think I’m not strong enough to have this done 

    thankyou for replying and  listening 


  • Hello Pauline

    From your post, it sounds like you're in a really difficult space at the moment and I can understand that the last year has taken its toll on you. You have got a difficult decision to make and it's natural that you want to ensure that it's the correct decision for you. 

    As you've mentioned in your reply to Moderator Steph that you're unable to contact our nurse team by phone, I wanted to reply to give you a couple of other options to try and connect with some support online. 

    You can get in touch with our nurse team via their Contact Us form. Macmillan also has a Live Chat service available via their website which you can find information about at the bottom of this link here

    I can't see that we currently have any members here on the forum who are living with a laryngectomy but we do have quite a number of members on this thread who have a range of experiences with head and neck cancers. You might want to have a look through some of the posts and may be able to connect with others who understand some of what you're dealing with. 

    Keep in touch Pauline. We'll do our best to support you. 

    Best wishes, 
    Cancer Chat moderator 

  • Hi there Jenn 

    thankyou that’s a great help and yes big decision,to make .

    and I will keep in touch and appreciate having some where I can come for support .

    regards Pauline 

  • Hi Pauline, 

    I am a Laryngectomee and have no voice.

    I have an Electrolarynx but it doesn't work very well over the phone so I use a writing board and of course text on the messaging system on my mobile phone.

    If there are any questions you would like to ask about Laryngectomy and the fear of the operation I am here.

    Kind regards 


  • Hi there Buckie 

    sorry took so long to reply ,still trying to work out what to do .I went to see a consultant yesterday he said I could go for radiotherapy but it wid only be targeted to small area and low dose because of last radiotherapy to all neck.other option is total larangectomy,so glad you messaged me as I have to make up my mind quick ,they have said I have a stoma and a voice thing cant remember  what it’s called .

    i really would like to know more about a larangectomy and what it’s like as in having it done time in hospital etc .

    i thank you in advance for any help and replying to my post 


  • Hi Pauline19647

    If I was you I would agree to Radiotherapy first rather than Laryngectomy, Sounds like a plan because once you've had your voice box removed you can't go back.

  • Hi Pauline19647

    I would go with Radiotherapy first, rather than Laryngectomy because once they remove your voice box you will have no voice and can't go back.

    Kind regards, 


  • Hi there 

    I been thinking about radiotherapy and because they have said it can do more same he to tissue and spine 

    and if don’t work I may not be able to have the operation due to damage 

    it’s a tough one they will fit me with a stoma and voice thing so I can speak 

    I have till Monday to decide , how did u find the op and recovery wud help me to know these things and from someone who has had it done . As u will know as u have had it done 

    Regards pauline 

  • Hi Pauline19647 

    Not everyone is able to speak and I didn't find the Electrolarynx worked for me. It's been 10/11 months since the Laryngectomy and I'm still struggling to swallow. The thing about Radiotherapy it can still work. 
    The worst thing about a Laryngectomy is If they can't fit you with a voice it becomes very difficult to communicate and you have to write everything down. 
    I still maintain chemotherapy or radiotherapy are far and away more preferable than Laryngectomy. 
    Has your Surgeon suggested chemotherapy..?