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 Andy

I'm so glad to hear you had good news at the clinic! I was wondering - have you been offered speech therapy? It might help you to use your voice without straining it and help you to relax, because when you are stressed your neck muscles tighten and it affects your voice.

Keep in touch and hope you stay healthy.

Love Marion x

Hi Chris

I was so sorry to hear that you have to go in for another biopsy tomorrow. Please let me know how you get on. I expect you will have to wait for 2 weeks for the results though? Try not to worry as I have been down that road so many times and most of the time it was good news.

I'm keeping my fingers crossed for you.

Take care,

Love Marion x

Marion, Andy, Joe,

Hope your all well.

Just a short update as to where I am after last biopsy. The dyspalsia is still there and the consultant was concerned at the frequency of the growths returning so he has put me forward for radiotherapy. I go for my first consultation on Thursday and then will find out what is going to happen.

From what he was saying when I saw him last week I will getting the therapy for 3 weeks only so not a full course i presume. Part of me is nervous but in a strange way I am quite happy this is going to sorted hopefully once and for all as I am 90% certain it has returned already.

The only thing worrying me is how my voice is going to be afterwards but to be honest it is awful now so fingers crossed for an improvement.

I will keep you updated on how I go.

Chris

Hi Chris,

Sorry to hear that but I'm sure as you say, this will get you sorted once and for all so you can get on with your life. As you know marion had radiotherapy and has since got her voice back so i'm sure you will be ok. Since we last spoke my voice has been steadily getting worse and although my check up in april went well my last one revealed some imflamation so he has put me on steroids and antibiotics to help reduce it, and its been slightly better, but if that doesn't work I will have to have another biopsy by laser, so 1 step forward 2 back! I have a feeling that I may too eventually have to go down the radiotherapy route if all this doesn't work. guess we just have to try and stay positive and focus on getting our selves well. I do long to be able to talk properly, I watch other people do what I used to be able to do and they do it so effortlessly! I'm sure and hope it will be the same for us one day soon, may take a little longer but WE WILL GET THERE. All the best chris and hope the treatment goes well for you and it isn't too disruptive. Please feel free to msg me when ever you want if you fancy a chat. This site has been a god send for me as Its good to talk with others who are going through the same thing as sometimes I feel like the only person in the world with a bad voice! Take care mate, speak soon.

Andy

Hi Chris

Just want to wish you good luck at your consulation on Thursday and I'm so sorry that the news wasn't good. You will have to be fitted with a radiotherapy mask and will have a tiny "tattoo" on your chest so that can "line you up" for the treatment but all part of the planning that's necessary. Please do ask me anything you need to know about the treatment and side effects. I can give you my email address if you want so you can email me if you ever want reassurance or need to ask anything from someone who's experienced this nasty disease.

You will probably find that when the treatment is all over and you recover, your voice will be much better than it is now. I have my 'normal' voice back and although I try not to strain it, my voice is perfect after having years of a very husky, hoarse voice. Ttry not to worry about your voice, the important thing is that you focus on the treatment and hopefully clear it up once and for all!

Take care and please let us know how you get on after your appointment.

Love Marion x

Hi Andy

Sorry to hear that your voice isn't too good at the moment but last time you saw your consultant he was pleased so hopefully it might be better than you think. Have you seen a speech therapist? They teach you how to use your voice without straining it by relaxing your neck muscles when you speak. Saying that, I'm not sure that it helped that much really, although it did make me aware of situations to try and avoid (like being in very noisy environments).

When is your next appointment?

Keep in touch and take care.

Love Marion x

Marion,Andy,

Thanks for swift replies.

It is very useful having this ability to speak to people who have been and are going through this. I am surprisingly in good spirits and looking forward to getting rid of this for good. It has been a long 2 years up to this point and as you stated Andy it is difficult watching people and families speaking normally and me on the outside having to concentrate on just getting a word out sometimes.

I hope this does work and i will take the side effects if it gets me back to normal. I will keep you updated of progress as and when. One thing I did want to know Marion is will I be able to normal things when going through the therapy? Or does it knock you for six?

Speak soon,

Chris

Hi Chris

I had 4 years of being monitored and I felt the same as you and in some ways it was a bit of a relief when I could finally get it sorted once and for all. I just wanted my voice back - I was fed up with people always asking me if I had a sore throat or "too much karioke?" which really used to annoy me!

In answer to your question, the side effects are pretty horrible but I had my treatment 3 times a day for 2 and a half weeks so it was very intense. So by the end of the first week I had 15 treatments so I started to feel quite rough by then. The first few days weren't too bad so if you're having radiotherapy once a day then the side effects won't kick in for a couple of weeks.

The worse side effect was (and still is) the lack of saliva and dry mouth. You really don't know how much you depend on it to swallow your food until you don't have it! I had to go into hospital at the end of the second week (30 treatments) to be tube-fed as I couldn't even manage to swallow water and I was very dehydrated. I ended up on the ward for 2 weeks and was about to have a PEG fitted (a tube which goes straight in to your stomach) but I was so adament I wouldn't have one that I forced myself to eat some pureed weetabix! I lost a stone once I came out of hospital as it was very difficult to eat and the pain was pretty bad. I was on morphine for a few weeks but that made me really sick so it was a vicious circle as I didn't feel like eating anyway.

To summarise, you will be fine at first and then as time goes on you will be in some discomfort and you will feel very, very tired so try and prepare yourself and don't plan too far ahead. Just stay focused and beat this horrible disease once and for all!

When do you start your treatment? I had to wait 6 weeks befor they could start as there's a lot of planning involved.

I'd love to hear from you with updates Chris, if you ever want to email me at home it's marion.taylor27@ntlworld.com or otherwise keep posting as I'm sure Andy and others will want to know how you are getting on.

Take care,

Love Marion x

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 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

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 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.