Hi Zarker

I had severe displacia of the vocal chords around 5 years ago and was told that I needed laser treatment immediately as it "was very close to cancer". I had laser treatment a few times and had to have biopsies done around every 2 - 3 months but in my case it had gone too deep so they could only laser the surface and it kept coming back. If you are a smoker you should give it up immediately as my consultant told me to avoid smoke at all costs.

I went on to have larygneal cancer but I was stage T2-3 when I was eventually diagnosed. I was successfully treated with radiotherapy 28 months ago and touch wood everything is fine and my voice is better than it's been for years.

On a positive note they are closely monitoring you and as you are at a very early stage hopefully they will be able to get rid of it with laser treatment alone.

I wish you well and hope that the next laser treatment will be the end of it.

Marion x

Hi Marion ,

Thanks very much for your reply it was most helpful. I hope you don't mind me asking but how long was it from when they found displacia to you being diagnosed with laryngeal cancer? As this is what I think may be happening to me. They said inicially It could be treated with laser alone and after my last laser treatment yesterday that the return was on the surface only and did not warrant rdiotherapy at the moment and he had done deeper biopsys which he says hes sure arn't cancerous. This has as you know been a very difficult time for me as i'm so scared of loosing my voice or having to have a laryngectomy which I've been told is unlikely. i'm reassured to know that after your treatment your voice is now good. Thank you again and I hope you continue to do well. Andy

p,s gave up smoking 5 years ago and after this will never go back to it!

Hi joninty

Sorry to see that you are having a bad time at the moment, how is the treatment coming on, I had radiotherapy for my throat cancer I had it for 6 weeks it want that bad at first but I was so tired after, like you I lost my voice but after a while it steadily came back people dont understand how it is it is so frustrating not being able to just say what you want.

What did your specialist say did he say it is only Ti. if so the future looks good, has the treatment done the trick, all I can say is keep smiling there is always light at the end of the tunnel,

If you want if you want to talk about it later after yor treatment I will give you my email if you need anymore help.

love michael.

Hi Marion,

Am having voice therapy at the moment but it doesn't seem to be helping that much. Sometimes when I'm relaxed at home and its quiet I can almost read something aloud normally but as soon as there is back ground noise and I have to increase volume it starts to break up. I think some of it is psycological as I tend to worry too much about how I will sound and then of course everything tightens up. My clients at work have been v understanding and are used to me sounding hoarse and don't mind which helps me relax but when I have to meet new people I feel very self conscious. Guess its all part of the course, I just hope the next check up goes ok otherwise I think its more lasering. Hope all is well with you.

Andy x

hi Chris,

Just wondering how your appointment went on thurs? Just wanted to say hope all went well and don't hesitate to contact me when ever you want during your treatment or any time. If you want to contact me directly my e mail is andy.moore8@sky.com and I have g mail chat etc. Sure you will be fine soon. My voice has slightly improved but still no where near how i want it to be as I noticed tonight in a crowded noisy pub watching the football, don't think anyone heard what I said! Anyway have a good w/e and keep in touch.

Best wishes

andy

Hi Chris

I know what you mean about speech therapy, it didn't help me much but at least I thought I'd give it a go.

If it's of any reassurance, although my voice is great most of the time, I also have times where I've strained it because of talking too much or too loud. I used to panic every time I got hoarse worrying that the cancer had come back but I've got used to it now and I think I'd only panic now if it didn't go back to normal after a few days.

Sounds like you shouldn't have wasted your voice shouting after England on Friday! ;)

Let me know how you get on at your next appointment. Hope we hear from Chris soon as well.

Love Marion x

Hi Marion,

Yes keeping up with the voice therapy as its good sometimes to just have someone to talk to once a week who understands what this is like. I've got my appointment with my consultant today right in the middle of the football!! so hopefully the waiting room will be quiet My voice has been a little better over the last week so really hoping that everything looks alright when he looks at it. i will let you know how i get on.

Andy x

Hi Guys hope you are well.

Well I can tell you it has been an up and down week or so since I last posted. I went to see the oncologist who talked to me about it and all the risks and told me to go and think over what I want to do. So after a couple of sleepless nights I decided that I was going to have it done. I got called back in the following Tuesday to be told that I was not advanced enough so they were going to just keep on watching me until it developed or not.

However I got another call to go back in on Monday to be told that after speaking to an expert at Christies in Manchester that it would almost certainly become cancer in the future they have no decided to let me have the RT done!!!!!!!!!

In some ways it has helped me as I was very disappointed not to be having done so hopefully this will bring an end to it all. I will keep you posted as to when I start and how it is going.

Andy I hope your check up went well.

Chris

hi Chris, Marion

Sounds quite unsettling all that tooing and throwing but glad to hear you are going to get the treatment, and i'm sure you are doing the right thing. Just had my check up which was sort of ok he said while the swelling had gone down and my voice sounded better he would keep an eye on it as theres still a small area which is suspect but he thinks this may be scarring from the laser but if there is any more swelling he will want to do another biopsy under a general. Each month I hope when I see him he will say its all cleared up and when he say's its still not normal and he'll will keep an eye on it, its like a sort of temporary reprieve,as I really hate having the upheaval of having the laser, sure you know the feeling.... Keep us posted chris and let us know how you get on with the treatment.

All the best

Andy

Hi Andy

Just wanted to say sorry that I replied to you but said "Hi Chris"! Sorry it's because I'm replying to you and Chris I got confused!

I notice you asked Michael (Joenity) what stage he was at and I know you are worrying that your T1 will progress. My consultant told me that T1 means "cancer in situ" and a very early stage but if (god forbid) it progresses it will still be caught early as you are being monitored regularly so hope you are reassured by that.

When I was first diagnosed I was graded as a T2 but my notes say T3 so I'm still not sure but at least I am still doing well and cancer free (touch wood). My voice is really hoarse at the moment but it probably had something to do with watching England play and shouting at the television!

Just wondering, have you ever had an MRI scan? My consultant sent me for one when I was still at the displacia stage.

Keep posting and keep your chin up, I know how hard it is.

Love Marion x

Hi Marion.

how are you at the moment has your cancer gone, I didnt want to worry Zacker to much, I have had 3 mri scans one last week, I thought the cancer had come back but I had a infection in my suliva glands only,

I had T3 before my op and had 2 biopsys before they found out what was wrong, it no good thinking what might happen you just worry yourself about it people dont understand if it hasent happend to you.

I hope Zacker gets better and all is well for him and you, I am not to bad I did a abseil down a castle for charity to prove to myself that life goes on.

Well hope you dont mind me getting intouch.

Love joeninty

Hi Joeninty

Thanks for your message, of course I don't mind you getting in touch!

I have only just realised that you have actually had a laryngectomy. That must have been very hard for you and something that I worry about a lot. Do you have a valve so that you can talk? Were you offered radiotherapy?

What a relief it was an infection in your salivary glands - you must have been very worried waiting for the results of your MRI scan.

Well done for abseiling down a castle for charity! I take it you did it for cancer research? I'm terrified of heights but I did the Race for Life with a couple of friends a few months after my treatment and we managed to raise £2,500. It made me feel good to give something back to cancer reseach and I burst into tears as I ran (or rather jogged!) across the finishing line.

Hope Andy (Zarker) and Chris are doing ok and speak to you all soon.

Take care

Love Marion x

Hi Joeninty

Thanks for your message, of course I don't mind you getting in touch!

I have only just realised that you have actually had a laryngectomy. That must have been very hard for you and something that I worry about a lot. Do you have a valve so that you can talk? Were you offered radiotherapy?

What a relief it was an infection in your salivary glands - you must have been very worried waiting for the results of your MRI scan.

Well done for abseiling down a castle for charity! I take it you did it for cancer research? I'm terrified of heights but I did the Race for Life with a couple of friends a few months after my treatment and we managed to raise £2,500. It made me feel good to give something back to cancer reseach and I burst into tears as I ran (or rather jogged!) across the finishing line.

Hope Andy (Zarker) and Chris are doing ok and speak to you all soon.

Take care

Love Marion x

Hi Marion.

How are you getting on is your health improved, I did have radio after my first biopsy, I had it for 6 weeks that left me very tired, then I had another biopsy and was told it had moved onto my other vocal cord, the radio hadn't shrunk it.

I had a total laryngegtomy I was in hospital for 10 weeks, I have a voice valve fitted it took a lot of patients to be able to speak again, you don't know how you miss not being able to just talk when you want to.

Like a said I did a abseil down a castle only 80 feet, heights dont worry me as I used to be a slinger and used to walk along girders with chain blocks the charity was hope house for kids we dont see anything for charity for cancer.

Why do you worry about a laryengectomy.

Well love you and leave you if you want to know anything else let me know, what upset me was I dont smoke and the specialist kept asking how lond I had been smoking.

Love Michael.:p

Hi Michael

Sorry it's taken a while to get back to you.

I'm well at the moment and hope you are too. My next hospital check up is on 28 July but hopefully all will be well. It will be 3 years August since my treatment finished and I've been going every 3 months for the past year so I think my appointments might go up to every 6 months then.

In answer to your question about why I'm worried about having a laryngectomy, I am the biggest chatterbox going and I don't think I could cope without my voice. People deal with things in different ways but I know I would find it very hard as it was really frustrating when I had cancer and just after the treatment when I had to write everything down.

Take care and keep posting.

Love Marion x

Hi Marion.

Nice to hear from you, when you say that you worry about a laryngectomy do you think that you may have one in the future, its a couple of years that I had it, what wooried me at the time was I had to go back into hospital for 5 weeks as the right side of my neck hadn't healed, it is verry rare. I have a voice valve in and I dont know if you know what the operation intails, I have a stoma, do you know what I am talking about. If you want me to go on and talk about it I will let you know, some people don't like to talk about it, I have talked to patients in the hospital about how I am and how I feel after the op.

You talk about being a chatterbox well I am a geordie and you can see how I felt about the op.

Let me know if I can help you with anything, the specialist it is very rare for the cancer to come back after the op. one of the people I spoke to before the op had his 6 years ago He has hadf a couple of chest infections as I have had but no trouble, Like I said I have a voice valve in and can talk, that is a great help.

I wont bore you with more boring info let me know how you are getting on.

Love Michael.

Hi Michael

Thanks for your reply and explaining more about your situation.

According to my consultant there's no need for my anxiety about a total laryngectomy as he feels that I will be OK. It's been nearly 3 years now so I'm getting out of the "danger of reoccurance" zone. I can't get complacent though as I still haven't got to the 5 years "all clear" stage but as the years go by I am starting to get less worried. My consultant put me forward for counselling last year, as in his words "your throat is OK but your head isn't!" I wasn't offended as he knows me so well now and we share banter.

I do know what a stoma is and I see quite a lot of people who have them at the clinic. I'm glad to hear that you are getting on with life as normal as possible and that you are managing to talk with your voice valve.

Take care,

Love Marion x

Hi Marion.

Glad to see you are not as bad as I thought, its great newes to see you are all clear you know how I am if you know what a stoma are. when you have cancer it is hard to talk about it and I found that people seem to shy away from you. I have been to the hospital and spoken to people like me about treatment and the future and it helps,

With this site you can talk to people and exchange messages about your problems,

Well keep well for the future.

Joeninty

Hi Michael

Thanks for your reply. It's great that you are talking to people in a similar situation as it always helps to talk to someone who knows exactly what you are going through.

I'll let you know how I get on with my next appointment on 28 July.

Love Marion x