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 Chris

How are you? I don't know if you've emailed me but my computer is so slow that I don't even bother to go on it anymore!

How did the radiotherapy go and have you got your voice back?

You will see that I've just replied to Andy and I seem to have gone down the same road as you.

I'm just about to start acupuncture to see if it helps with my dry mouth so I'll let you know how it goes. It will be great if it helps. I'm sure you will be going through all the horrible side effects that come with RT. Things will improve over time though.

Please let me know how it all went. I'll even sit at my computer for an hour waiting for it to load if you'd prefer to email me

Take care,

Love Marion x

Hi Chris

How are you? I don't know if you've emailed me but my computer is so slow that I don't even bother to go on it anymore!

How did the radiotherapy go and have you got your voice back?

You will see that I've just replied to Andy and I seem to have gone down the same road as you.

I'm just about to start acupuncture to see if it helps with my dry mouth so I'll let you know how it goes. It will be great if it helps. I'm sure you will be going through all the horrible side effects that come with RT. Things will improve over time though.

Please let me know how it all went. I'll even sit at my computer for an hour waiting for it to load if you'd prefer to email me

Take care,

Love Marion x

Hi Marion,

Hope your well.

I did send you an email but don't sit there for an hour please I would feel bad!!!!! lol

I am ok after the RT. It is three and a half weeks since it finished today and although still sore inside (this is getting a bit less) everything seems to be heading in right direction.

I had all the side effects you mentioned and I must say it is the worst pain I have ever had. I lost a stone and half during treatment but was forcing as much food (soup) down as I could manage. One thing I seem to have been lucky with is my saliva. I am dry in my throat but ok in my mouth. It appears that they have given me the RT from both sides and not face on and so missed my main glands. This does cause other problems as it hit my main artery so puts me at a higher risk of a stroke in the future. I guess I need to be healthy and hope it does not happen

My voice has improved over last week or so. It improved during my treatment a little then all but went after I had finished. I was panicking but it has improved. I just don't want to count my chickens yet as it will still be swollen and I have had false signs before so just taking every good day as a bonus and will see where I am after 3 months.

It is funny that during the recovery that it all seems to get better over a period of time but the pain and quality of voice alters daily. I have been told the recovery can take up to 6 months so just letting everything settle down and will have to review where I am then. The main thing at the moment is tiredness. I can be fine and then all of a sudden it feels like I have not been to bed for a week. i went for a walk on Sunday and bang on 3 o clock (the same as everyday) I was fit for nothing!!!!

I hope your accupuncture works. You will have to keep us posted.

Take Care

Chris xx

Hi Chris

Glad to hear that you're on the slow road to recovery. I know what you mean about feeling tired - RT does that to you. I still feel tired now after 3 years but maybe it's old age (I'm a young 53 year old) but neither act or feel it! I remember around the same time of day as you I just had to lie down for an hour. It was at this stage that I suddenly became very anxious and had an overwhelming feeling of dread and didn't know what to do with myself but the oncologists say it's perfectly normal as you're in "the in between" stage where you've had your treatment and all of a sudden you're starting to recover physically but you still don't know if the treatment has worked. I have to say that was the worse time for me as I was so scared and depressed. Hopefully it won't affect you like that and I know you've already been down that road.

Good job that you don't have a dry mouth as it's so annoying, not being able to swallow dry food and wake up with your tongue feeling like sandpaper! lol. Your dry throat will get better over time as well. Do you have to have an MRI scan after 8 weeks post-RT? I did, and the waiting was awful. Even then, they could only say that it was as they expected - they couldn't tell me if I was cured. Only time tells.

Looking back I was a bit silly really as I went back to work 6 weeks after my treatment and only 4 weeks after coming out of hospital as I had to be tube fed and then I got a pulmonary embolism! I was so tired after travelling 3 hours to work and then working an 8 hour day but I felt I needed to get back to "normal" - what ever that is!

My voice did exactly the same as yours - it was coming back during the treatment and then it suddenly went and I panicked thinking that the RT wasn't working. It also came back for a bit when I was at home after a couple of weeks and went again - but they said it was all normal so if it happens to you don't panic!

I have to leave work now but I'll respond to Andy tomorrow (if you're reading this Andy)!

Take care and stay in touch..

Love Marion xx