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 Michael (Joeninty)

Nice to see that you are still reading our posts - I haven't forgotten you!

I have just replied to Andy so there's probably not a lot to add but hope you are doing well.

Keep posting!

Love Marion x

Hi Marion thanks for your reply. Its strange but in an odd way I feel like a weight has been lifted and actually feel v positive about the future, its like the buck stops here and i'm finally saying, GO!... be off with you!!! I'm obviously wary about the treatment and how I will feel during and slightly worried it could affect my voice, but hey , it sounds bad enough now, and they told me at worse it may only stay the same, so i'm hoping for some improvement. Funnily enough now my throat is healing from the laser my voice has been slightly better over the last few days and I went back to work yesterday.

Not sure if I mentioned i'm a personal fitness trainer, I use my voice a fair amount but I don't shout at clients and work in a small private gym, which thankfully isn't too noisy. Do you think I will be able to keep working during the first few weeks of treatment? My consultant said he'd leave it up to me but if I felt ok then I should be able to. I know towards the end of the treatment I will need to take time off, which I guessing should be round about xmas time. I think i'm going to tell my clients that I will review it on a weekly or daily basis depending on how I feel as I work for my self so want to keep some money coming in.

Thanks again for all the info and don't worry about waffling I do a lot of that too so your in good company, and its much easier to waffle with your finger tips than with a hoarse voice. It is strange about the left vocal chord...I'm left handed so perhaps its that!

Was thinking.... looking at all our posts, that perhaps each time we post we should mention something were've done or somewhere been which has absolutely nothing to do with cancer, eg, film or play you've seen or album you've heard etc just to lighten things up a bit and find out a bit about each other, perhaps its a bit naff but might make things a bit more fun. Will keep you posted and up to date on my progress and thanks again for your continued support.

Love Andy xx

Hi Luckus.

Thanks for replying, I know what he must be thinking, when I was told what the outcome of my biopsy/radio and 3 trips down to theatre for checkups, the specialist gave me the news that I didnt want, I came out of his office and a specialist nurse came running after me and said did I understand what he had just told me, I had took it all in, the next thing I knew I had a date for my op.

The operation I had is called a total laryngectomy, I wont tell you anymore, it is the wrong end of my type of cancer, I am great now do most of the things I did before.

I did a abseil for a childs charity in april only 65 yards down it was great no nerves. tell your husband to talk about it with you, the more you know what he is thinking the more you can help to find out things on his behalf hope to hear from you again

joeninty Michael.

Hi Marion.

What stage was your cancer mine was T4 I had surgery in the end, not what I wanted but it has gone now. how are you keeping now, have you got on with your life like me now.

There seems to be more people on here lately with neck cancers, the first thing my specialist asked was how long I had been smoking, I dont smoke and never had, it must have been the wild life I had in the 60s in pubs watching all the groups.

Nice to hear from you all the best.

Michael.

Hi Zacker.

I see you have to have radio, I had it for 6 weeks, like Marion says you will probably

have to have a mask made it is to stop you moving around during the lazer, it dosnt hurt at all but near the end you will get very tired, I also had a dry mouth but I went to the doctors and you can get a artificial suliva spray to spray down your throat and it helps alot, I was also given drinks by the diet nurse as I coudnt swallow much. because I had a bit of lazer done before the radio.

Sounds like they have sorted you out. let us know how you get on.

Best of luck.

Michael. joeninty

Hi michael thanks for your reply and thoughts, yes have to go in on tues and get fitted up etc, am at Barts in london and they have a very unit and offer lots of advice and support so I think i'm in good hands. I'm really glad to hear that your cancer has gone and you are getting on with your life and well done on the ab sail, i'm impressed!! thanks again for your support.

Best Wishes

Andy

Hi Andy

Great that you have such a positive attitude! Like you said, at least you can get rid of it now instead of constant monitoring.

You did mention before you was a personal trainer but I forgot about that. That's making me feel a bit lazy as I don't do any exercise although I was going to palates regularly up until last month.

I'm not sure what to say about the tiredness after RT as I was having it 3 times a day I got tired quite quickly. It's hard to remember but I'm sure that I was feeling really tired during my second week so that would have been at least 15 doses and that would be equivalent to 3 weeks worth of radio. Just play it by ear as everyone is different and I think you are doing the right thing but reviewing work on a weekly basis.

I agree it would be good to talk about 'normal' things as well. After just coming back from New York I'm on a bit of a downer at the moment but still feeling tired so I'm sure I'll cheer up after the weekend.

How old are you Andy? You sound young but it's hard to tell by writing! Did you ever smoke and do you drink? I like to think I'm a young 53 year old (well so I'm told!) and don't smoke but still like a glass of wine (I know I shouldn't but I don't go mad).

Look forward to hearing from you soon. Have a great weekend!

Love Marion xx

Hi Michael

I was staged at T3 N1 but I don't smoke either, although the doctors jump to conclusion that it's smoking that causes it. Who knows if passive smoking is a contributor though - I've been to lots of smoky pubs in the past. Thank God for the smoking ban! I still think that my inhalers for asthma could be the cause as I have to take 2 inhalers twice a day every day. My consultant has blamed it on my genes!

You're right, there seems to be an increase in neck cancers, you may have seen from an earlier post that my daughter's friend has laryngeal cancer and she's only 30! I'm going to see her next week to answer any questions she has about the treatment. She starts in 3 weeks time.

Great that you are doing OK - keep up the good work!

Love Marion x

Hi Marion.

Iam sorry to hear about your friend got the same as me, did you say that you have just got back fron new york. I want to go abroad but I worried that the plane air and the traveling might affect my stoma I have been to america twice once to texas on a buddy holly trip and tice to florida. I would like to go again but can't take the risk.

Glad to hear that you are ok. and it sounds like zacker is going through a bit of a time, I also go on cancer chat site and I am helping a lady who's mam is going for the same op as me and she is worried.

Best of health to you Marion.

Love Michael.

Hi Michael

A very close freind of mine had a total laryngeoctomy about 10 years ago at the age of 62. she went back to full time work after and started biking all round town ( only on good days) and helped on the ward for patients going through this horrible time. She passed away 7 years later ( the cancer never returned) how i wish i could talk to her now i was just so lucky that we talked so much while she was here and why we were so quick to get my husband checked out.

he was in yesterday for another biopsy and to have his vocal cord lasered so a bit of TLC today thanks for letting me jump into your long standing post but it has been such a great help.

Hugs to all

Luckyus

Hi Michael

A very close freind of mine had a total laryngeoctomy about 10 years ago at the age of 62. she went back to full time work after and started biking all round town ( only on good days) and helped on the ward for patients going through this horrible time. She passed away 7 years later ( the cancer never returned) how i wish i could talk to her now i was just so lucky that we talked so much while she was here and why we were so quick to get my husband checked out.

he was in yesterday for another biopsy and to have his vocal cord lasered so a bit of TLC today thanks for letting me jump into your long standing post but it has been such a great help.

Hugs to all

Luckyus

Hi Luckyus.

I havent been on for a while,your husband is in for laser treatment again, I had iy done, sorry to hear about your friend. I had my total 3 years now and more or less back to normal, like I told a friend of mine I did a abseil this year for the kids cancer, it was only 65 ft I thought it was great. how is your husband now, have they told him what treatment he will need or will this treatment solve his problem, I have got a friend who's mum may be going into hospital for a major op, soon, I have been helping with a bit of advice on my own experance hoping it will help. how old is your husband, did they ask him at the hospital do you drink, smoke etc. it seems to be the same questions everywhere in the country, is he still in hospital if so give him all me best tell him to hang on in there as it will come alright in the end. let me know how you get on, also how are you getting on I bet it is a bit of a shock for you, I have 3 daughters you can see how much I got looked after.

Lots of love, hope to hear from you .

michael.

Hi Micheal

My Husband is 55 we wait 6 weeks now to find out what happens next he is very sorry for himself today, Yes the hospital did ask the questions about drinking and smoking he has smoked all his adult life and the last 20 years cigars only ( the small ones).

This has always been my fer after my friend got it i leart all the statistics but he never thought it would happen to him.

We have 2 daughters.

will write again when i have new news

pleased you have got your life back on track and good for you doing the absailing

Take care

Luckyus

Hi Luckyus

.

I know how he must be feeling, when I was going for biopsy's I had 2. You think why havent they fixed it last time, the thing about cancer you can never tell what will happen with it. They say smoking doesnt help but I got it and dont smoke. like I said I am 66 now and have had cancer for 3 years been into hospital a couple of times but sorted now not the way I would have liked, but back to normal all exept playing golf, it is two much effert to do now, back to diy, playing my guitar's etc. wish your husband all the best from me hope he gets back to normal again, let me know how he gets on.

michael.

Hi lucky us,

Just read your post. Sorry to hear about the delay for your husband and his treatment. Did they have any ides'a about what they think the next move will be? I can't remember if you said he had already had laser treatment?

I smoked on and off from when I was a teenager and stopped about 7 years ago. I was only a social smoker so would have a few when out drinking with friends so  guess that could have contributed to it and I do like a drink, not excessive, but like a good few glasses of wine with a meal or a few beers with friends, again only socially, so I know that will all have to change after my treatment.

I think my biggest fear is of loosing my voice box as your friend did, although my consultant has assured me this won't happen, I just don't think I could cope with that as I love talking and am a good communicator, however it sounds like michael has done really well since his op, he's probably made of tougher stuff than me, so well done to him.

I start my radiotherapy a week mon, am very nervous about how it will affect me physically although the doctor seems to be fairly optimistic that it won't be too bad, but i'm prepared to put up with whatever  if this can clear it up for good, fingers crossed. I think with all this waiting is the worst thing as you then have time to dwell on things and the worry goes into over drive. I think when they told me about the RT I just thought great! lets get on with it! I really hope you get some news soon. As you've noticed with us its not a quick fix but at least we are all aware we have a problem and are being monitered carefully and are in good hands so that hopefully in the not too distant future we can all move on from this and get on with our lives.

Will let you know I get on and if you ever need any advice please, just ask,  without wanting to sound naff, you are part of our group and we will look out for each other. just noticed that over 10,500 people have viewed our posts! So hopefluuy we are helping othes too.

Best wishes to you and your husband.

Andy ( zarker)

Hi Zacker.

I read your post to luckyus, have you had radiotheropy before I had 6 weeks of it it is not to bad , do you have to have a mask fitted for the radio, I did it might sound bad but it is nothing I had the radio once a day but some people have it a few times, the only thing is you get tired as the treatment goes on I also had a dry mouth but I got some arificial siliva and you spray it in your throat and it is great.

let me know how your treatment gets on all the best to you.

michael joeninty

Hi Andy

Just a quick message to say good luck for Monday!  Keep us updated while you can.  You might not feel like going on-line in a few weeks time but we will be thinking of you.

Love Marion x

Hi Luckyus

Sorry to hear that your husband has to wait 6 weeks for the results!  Is there no way you can get the results sooner?  I had to wait 2 weeks for mine but that seemed like an eternity.  I can't believe that they won't get the results sooner.  Have they sent him for an MRI scan?

Hope the results aren't as bad as you fear.

Take care

Marion x

Hi Marion

I thought i might call the hospital today to see if we can get in sooner we waited last time for 2 weeks and you are right even that was too long. if we wait the 6  weeks it will make it christmas week.Good or bad i dont even want to know anything about this disease at christmas. Thats my time of year!! selfish i know.

No scans have been mentioned at the moment they seem to be playing it down saying how early we have caught it and this laser should be the end of it. I am not stupid and i know that many people are told they should be ok and the Doctors are wrong so we will just have to wait and see.

thank you so much for all the advice you have given through this post over the past 6 weeks it has been so helpful.

Big hugs

Luckyus

Hi Marion,

Thanks for that,  had a dry run yday with mask, its very tight and feels a bit claustrophobic but guess I'll get used to it. They say the fields ( where the beam hits) are quite small and low down in the larynx and not near my mouth so I shouldn't have saliva problems so fingers crossed on that, but I know its not going to be a walk in the park. Ironically my voice is not too bad at the moment, sods law I guess!

Went to see my GP yday who had the notes from the meeting of disciplinary team who were deciding my treatment and was saying some of the people were against RT saying my cancer was in situ and not invasive so therefore didn't warrant it, but my consultant was convinced it was just about to become invasive and really pushed for the RT, apparently they were thrashing it out for 1 and half hours! My doctor thinks he's made the right decision and I feel its right too as I just want an end to this.

Any way will let you know how I get on and hope all is good with you.

Love

Andy

Hi Luckyus

Thanks for your lovely reply, if I've helped in some way that's a very good feeling.

I hope you get the results back really soon and it's good news.

I'm keeping everything crossed!

Love Marion x