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.

Nervous waiting

ld72
Posted by

Ask as many questions as you can about the different options my daughter was offered radiotherapy or the lazer.

Its so confusing with all the options especially at a time when your emotionally drained. Keep a note pad and make a list of any question i felt this helped when meeting with her consultant. 

Keep us updated on how your husband gets on

Your both in my thoughts xxx lisa

JenBob
Posted by

Hi Lisa

We've been offered either complete voice box removal and stoma or 6 weeks of radiotherapy and chemo it's so hard to decide as they both have different effects I'm really upset that if we opt for surgery he'll loose his voice 

Any advise on radiotherapy would really help thanks

Jenny x 

chris2012
Posted by

Hello Jenny, don't apologise for the question as I don't mind answering them . Yes I have a stoma which I don't even know I have it ,only to change the filter and base plates that cover the stoma , I think it was just a matter of time getting used to no voice as such and relied on pen and paper then a speech app on computer and phone , I have not had any rude comments from the public about it all and most are only to willing to help out . Its not a walk in the park having it done and its suprising how quickly everything heals up and after about 6 months it becomes second nature and I gradually adapted to my new way of life and so far its all good .

                                                                           Chris 

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

JenBob
Posted by

Hi Chris

Thank you for replying it's stories like yours that really do help with making a decision about which treatment option to go for

Did you have speech therapy at all to give you back some sort of voice?

Next week we are meeting a couple who's husband as had a full voice box removal and this will give us some idea of what to expect which I think will really help us

I will keep you posted

Jenny x

chris2012
Posted by

Good evening Jenny , I did have speech therapy but due to two previous cancer operations my nerves and muscles got damaged so I cannot speak at all , if you click on my name at the top of the page it will take you to my profile where it gives a brief outline of my cancer journey . This is a very good idea to meet up with somebody who has had this operation, I have met up with patients who wanted advice and just to see what the stoma etc looks like so good luck with the meeting and do not be afraid to ask questions as they will be only to pleased to help , take care .

                                                          Chris x

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

Natt36
Posted by

Hi Jenny

Sorry to read about your husband’s diagnosis of laryngeal cancer.


I just thought I’d share a brief outline of my journey as I too was diagnosed with very late stage 3 laryngeal cancer in July last year. 


Like your husband I was given the option of full laryngectomy or radiotherapy & chemotherapy together. 


It is an awful decision to make as you don’t know what the outcome from either will be, (I was given 60% success for both treatments) we asked lots of questions and eventually opted for chemo & radiotherapy - this was chemotherapy once a week for six weeks combined with 30 sessions of radiotherapy. 


Prior to treatment starting they fit a peg so that if it becomes too difficult to eat & drink you can use it, the treatment is not pleasant but you get through it, i found the first 4 weeks were ok really, but I found once my treatment had finished, the 2 weeks after that were the worst as the radiotherapy had built up and continued to work.  

Main symptoms were lack of taste, lump feeling in my throat and then soreness / pain when swallowing.  The skin on the outside of my neck did blister towards the end and was also very sore.  (I don’t mean to go into side effects but feel it’s best for you to know)


There wasn’t anyone that I could talk to before my treatment so It was all a bit unknown, all though, I understand the treatment can effect everyone differently.


My voice is horse, but it had been for sometime before I was diagnosed - however, it is clearer now than it was prior to my starting treatment (my cancer had spread from inside the voice box and wrapped around my vocal chord which prevented it from moving).


In the end the view I took was that I would try chemo & radiotherapy first and if that didn’t work I still had the option of a full laryngectomy.


It’s a long wait for results after radiotherapy as they have to wait 12 weeks to give the cells chance to heal but I was given the initial ‘all clear’ in February and am on 6 weekly camera checks for now, with 3 monthly biopsies.


My taste buds have mostly returned too.


Sorry if I have gone on a bit, please feel free to ask any other questions you may have, best wishes to you and your husband


Natalie 

JenBob
Posted by

Hello Natalie

Thank you so much for taking the time to reply to me your story was very informative and it's good to hear from someone who can give an insight as to side effects 

We were given the option of radiotherapy and chemo combined with 70% that the treatment would work or full laryngectomy , it's such a difficult decision to make and which option do you choose?

My husband as decided to go for the laryngectomy he's at the stage where he just wants the cancer out sooner rather then later and as he's said to me although it's a big op and he will loose his voice he knows that he couldn't cope with radiotherapy and it's side effects although some may not understand his decision he's got to do what he knows he can cope with 

I'm hoping it's the right choice but who knows what's for the best in these situations

I'm glad you have had good results and I hope you continue to do so

I will keep you updated with my husbands progress 

Jenny 

x

mpgemg
Posted by

Hi Jenny, I was given the same choice as your Husband, and came to the same conclusions. Total laryngectomy or Radiotherapy ( with no guarantee of success ), I chose the surgery.

   Two years on, I have a reasonable voice (as long as there is not too much noise )!

   It was the stories of side effects that swayed me.

  Please wish you Husband all the best from me, and take it one day at a time☺

Natt36
Posted by

Hi Jenny

At least now your husband has made a decision, you can start to move forward and get dates for surgery etc. 


Best wishes to you both, I hope all goes well with your husbands surgery, it’s awful being in that situation and having to make a decision. 


Please let me know how he is getting on.


Best wishes


Natalie 

JenBob
Posted by

Thanks Natalie 

We will know a date for the op when we see the surgeon Thursday fingers crossed it all works out for the best 

I will update you on his progress and thank you for your advise

All the best for the future

Jenny x

JenBob
Posted by

Hi

I'm glad you have written it's good to hear from someone who as had the op. It's a big decision to make and I'm ok with him having it but it's just the thought of him not speaking again that worries me but reading your story as given me some confidence that he too will have some sort of speech 

Thank you again and all the best for the future 

Jenny x

seeker1
Posted by

As someone who has posted a very lot on here and my whole journey through it and my hospital stay, after having both treatments, I agree it is a very hard decision. I was not given an option, but there are things which I have to say. Having my stoma is not a simple thing even with a filter it needs constant cleaning which is not an easy thing to do. You must remember that your nose is not working and you have to manually do its work. The filter is not a perfect alternative. One can also have breathing problems. I manage very well without my voice which is my least problem and I can type. If you read my blog you will see that my radio was not at all successful and I believe it was overdone. Remember your life will be altogether different after the radio whereas after the surgery apart from the stoma and losing your voice it is not so bad. I also suffered from internal bleeding after the radio and have had endless blood transfusions but they claim it is coincidence and no one else has had it. Surprising it only started after the radio and not after the surgery. Please read my blog about staying in hospital where you will find out things they dont tell you from a patients point of view. I must add that I still meet my doctors regularly even have an appointment today and they do have time for me. 

JenBob
Posted by

Hi seeker1

I have read your blog and it's very informative it seems that you've had a bumpy road along the way to your recovery . My husband is just starting his journey and I do hope he gets through this .

I wish you all the best for the future I will keep you posted 

Jenny

seeker1
Posted by

I would advise you also to read all my other posts and when you decide what to do (I think in the end the doctor will decide for you) you will have a much better idea of what to ask the doctor and how to prepare yourself for surgery or radiation. As someone who has been through it, with hindsight it could have been a lot better and easier if I had known in advance what to expect. The hospitals are very large and the doctors very busy, and not available when you want and need them. The junior doctors seem to have a habit of being scared to do anything especially of discharging you. At the end I had a junior doctor who liked me and did everything for me, being with me at every test and procedure and speaking to her seniors about me. This helped me a very lot but i dont expect everyone to have this. I may also add that if you go for surgery, to speak to the ward sister in advance about many of the things I mentioned to make the stay in hospital comfortable. If you go for radiation and chemo, I would also advise you to speak to the staff and find out the waiting times and how long you will have to be in hospital for it. In my experience it was usually all day. Make sure you have what to occupy yourself with. 

JenBob
Posted by

Hi

Hope you don't mind me asking but what was your recovery like could you have any close relatives after the op come to visit, were you in intensive care, did you find it difficult not being able to speak and how long was it before you were up and about and eating and drinking again

Sorry for all the questions

Jenny