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,

Hope all is well with you and you have had a good summer. Just thought i'd drop you a line to touch base. Had my last check up in aug which revealed that the left side of the vocal chord is still inflamed and slightly swollen and although he examined me via the endoscope he could not see well enough to make a proper judgement as it always makes me choke, sure you know the feeling! Hence he wants to have a closer look at it while i'm out under a general, while he says he doesn't think the cancer has returned he thinks it could be scarring from the lasering or just badly strained from incorrect use of the voice for so long.

The quality of my voice varies from it being slightly hoarse in a quiet room to being almost inaudible in a noisy place or out side as there is no volume in it and i just can't make my self heard when lots of people are talking which is so frustrating as I sure you know. My consultant assures me it will improve but i'm beginning to think that perhaps he is just saying this as its been like this for so long, although it did improve dramatically after the last op in dec 09 but has been steadily deteriorating since Apr. I have a feeling that my vocal chord has been scarred from the lasering and this has done lasting damage as I have read that the voice never recovers if the vocal chord is scarred and there is no cosmetic treatment available to improve it, and if the cancer has returned I will need more lasering which will make the problem worse, so i don't know what to think.

I just wondered if you mind me asking how long was your voice hoarse and did you have any scarring and how long did it take to get back to normal? I know every case is different but I just want to know if there is some light at the end of the tunnel and that its not just a false hope thinking that one day it may return. I miss it so much, and am finding that my confidence is low when i talk to people, especially when I meet people for the first time, and I have been avoiding certain social situations and dread making phone calls, guess this is all familiar territory to you. Sorry this is so long and rambling just having a bad day.

Hope all your check ups are continuing to go well.

Best Wishes

Andy

Hi Zacker.

I have been reading your letter, you seen to be up and down, is the sore throat through the radio, has it inflamed your vocal cords. I had the same things wrong with me my voice never got better, I wont go into what happened after. my voice got weaker after the radio and it is hard not to be able to speak when and how you want to. I hope that you get better my thoughts are with you and all the people that have the same complaint, als I hope Marion is feeling better.

Thinking of you both.

Michael.

Hi Andy,

Hope your well.

Just seen your note and thought I would drop you a line to see if your feeling any better.

I know exactly what you are going through and how difficult it can be. I used to wake up in the night dreaming about it and hoping every day that I would wake up and my voice would be great. I used to skip meetings at work and all but stopped using the phone when it was at its worst. I will be honest Andy that I actually ended up on anti depressants because of it and got signed off work and this did help. I am not for one minute advising this as every person is different but it really cleared my mind and has helped me since and through my Radiotherapy.

On the issue of the scarring I would leave those thoughts for a while as if you have any swelling it can cause a change in your voice depending on where on the vocal cord it is. I was taking to a neighbours friend a couple of weeks ago and he had twelve papillomas lasered of his vocal cords and he sounds great so I would not worry yourself until you are clear of the dysplasia once and for all. When you get to this point, which you will one day, then you can see where you stand with your voice. There are things that can be done for scarring including speech therapy and things will be being developed so don't despair. I know how hard it is and we have all had bad days when you cannot see anything positive, But always remeber that it will at some point be good and you will not be stuck with this for ever. Also remember that this has been picked up very early and even if severe dysplasia it can still regress (and some doctors don't even class it as cancer and only in situ) and if it does get worse you will put through the RT and it will almost certainly clear it up.

As I said I hope you are feeling a bit better and if you want to drop me a line you can email me as you have my email address.

Take Care Mate,

Chris

Hi Andy

Sorry, I haven't been on this site for a while and just saw your post. I'm so sorry that you are having a bad time and you sound so down.

When I had very severe dysplacia my consultant didn't class it as cancer but pre-cancer or cancer "in situ" and after lasering it just sounded worse than ever. The more laser treatment I had the worse it seemed to get. Altogether I had a hoarse voice for about 4 years or so. It wasn't until I actually had cancer and radiotherapy that it returned to normal! I still can't believe how good it is considering it's been through so much. I didn't know about scarring but I'm sure with any procedure you will get some scarring but I can only try to reassure you that I'm sure it's not the end of your voice. I must have had at least 4 laser treatments and 9 biopsies before I eventually had 38 sessions of radiotherapy and my voice still survived! It goes to show how your body can recover. I had to have my phone on divert at work for ages as my voice was so bad and I was fed up with trying to explain that I didn't have a cold!

When are you going in to have an exploratory examination?

Easier said than done I know, but try not to worry until you know what you are dealing with. I know exactly how you are feeling and no--one will understand if they haven't been through it. I got to the stage where I didn't want to go out as I didn't want to strain my voice over loud background noise so it affects all aspects of your life. I have been on anti-depressants and they helped a bit but the constant fear of losing my voice altogether is still there even now. I feel like I've spent the last 7 years of my life worrying.

Let me know how you get on Andy and take care.

Love Marion x

Hi Andy

Sorry, I haven't been on this site for a while and just saw your post. I'm so sorry that you are having a bad time and you sound so down.

When I had very severe dysplacia my consultant didn't class it as cancer but pre-cancer or cancer "in situ" and after lasering it just sounded worse than ever. The more laser treatment I had the worse it seemed to get. Altogether I had a hoarse voice for about 4 years or so. It wasn't until I actually had cancer and radiotherapy that it returned to normal! I still can't believe how good it is considering it's been through so much. I didn't know about scarring but I'm sure with any procedure you will get some scarring but I can only try to reassure you that I'm sure it's not the end of your voice. I must have had at least 4 laser treatments and 9 biopsies before I eventually had 38 sessions of radiotherapy and my voice still survived! It goes to show how your body can recover. I had to have my phone on divert at work for ages as my voice was so bad and I was fed up with trying to explain that I didn't have a cold!

When are you going in to have an exploratory examination?

Easier said than done I know, but try not to worry until you know what you are dealing with. I know exactly how you are feeling and no--one will understand if they haven't been through it. I got to the stage where I didn't want to go out as I didn't want to strain my voice over loud background noise so it affects all aspects of your life. I have been on anti-depressants and they helped a bit but the constant fear of losing my voice altogether is still there even now. I feel like I've spent the last 7 years of my life worrying.

Let me know how you get on Andy and take care.

Love Marion x

Hi Marion,

Thanks so much for your reply and your kind words of reassurance it really helped cheer me up, also had a very nice positive reply from chris too so feeling much better. My voice at the moment is pretty consistently hoarse and has not got worse or better, my speech is very gravelly and deep and when I speak in a public place people tend to look round as i'm sure I sound weird, or perhaps i'm imagining this,( as friends tell me) as I have become very aware of how I sound. Like you I dread going out to noisy places as my voice goes completely and I have to explain why I sound so bad, its easier when you have a few friends round for dinner who know your problem and you don't feel self conscious, so have been doing a lot of that. Cinema and theatre are good too for voice economy! I know what you mean about the phone, after a day at work training clients my voice is in bits and the last thing I want to do is talk to friends on the phone, its too exhausting so I use msn or chat on facebook so its only my fingers that get tired.

I'm due for my mico endoscopy soon but have not had a date yet and couldn't get through to the right person at the hospital so have written to my consultant to find out when the date will be, have also had another CT scan. Its encouraging to hear that your voice is back to normal and the person that chris knows also has his voice back, as i'm sure you know how it feels at its worse, you feel like your old voice has gone for ever and that you will never again be able to have a normal conversation with anyone without straining.

Just wondering if you have changed many habits ( if you have any!) since or while you recovered, eg diet , alcohol, etc. I have always enjoyed a drink and i'm sure I have and probably still drink too much although I have cut down since all this. I'm finding at weekends I'm ( I don't drink during the week) drinking to try and relax which I know is not good as alcohol is bad for the voice. I drink either wine or beer as I know sprits are bad and obviously don't smoke. just wondered what your take is on this, as my consultant told me I would be better off giving up completely which I would find very difficult. Sorry this is all long and rambling but its so good to talk to people like your self and chris, who understand because as you say people just don't relaise how tough it is and how isolated one can feel struggling with this on your own. Good luck with the accupnture have heard lots of good things about that. let me know how you get on.

Keep in touch and take care

Andy x

P.S when we are all better we should all perhaps meet in person for a meal or something

Hi Andy

Nice to hear from you. I'm glad you're feeling a little bit better and that you are a bit more reassured.

I remember having a gravelly voice and I thought it would stay like that forever. A few weeks after having my RT someone from work phoned up and asked me "how Marion was", not realising it was me that answered the phone! They had never heard me speak in my normal voice before and thought they were talking to my daughter! The last time they had spoken to me I sounded like Phyllis Pearce (remember her?) from Coronation Street on a bad day! ;)

In answer to your question about changing any habits, I never smoked (which my consultant found hard to believe) but I do like a glass of wine although I have cut down a lot. I only drink at weekends and the maximum I drink is 3 glasses in an evening. It was hard on my 2 week holiday though as I was with my family and we were drinking every night although I tried to only have one or two. My consultant told me definitely not to drink spirits and said I can have the odd glass but I suppose I do have more than I should. It's very hard not to drink anything as I don't like soft drinks and it's very boring sitting there with water whille everyone else is getting merry but then the next day I worry that I've put myself at risk so I can't win really.

I'd love to meet up one day - where do you live? I live in Watford but work in London.

Let me know when you get a date for your micro endoscopy.

Take care and keep in touch.

Love Marion x