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 Mermaid1966

so pleased i could be a little help keep in touch.

Luckyus

Hi,

Thanks again and pass my best wishes to your husband, Good Luck to you both.

Chris x

Hi Chris.

You say laryngectomy do you mean a partial or total like I had, voice box removed, stoma in throat. as I had a total lary, I have a voice valve fitted that after a lot of patients learned to speak, did you have a large flap after the op. why I ask this is because people I have met ask different questions about how I care for myself now and after the op. did you meet someone that had the op. before you had yours to show you what the op. would look like after surgery, have you been told how to put on base plates and filters on they help with the fluid build up. like I say to people did you get a suction pump, and a nebuliser to take home, I use the nebuliser a couple of times a day it keeps the fluid thin so you can blow it up so it dosent block you chest and give you a chest infection, I have had 2 since my op, dont worry just go to the doctors and get antibiotics they soon clear up. that is the thing about our conditions we have to look after ourselfs more that other people, what have you been told what to do to look after your stoma do you get your equipment from countrywide supplies, they have a lot of different things I have tried a few as I find that some of the base plates have sticky stuff on them that pull the skin of so I have tried a different firm and they are better, another thing I have a small neck and it is sunk a bit so I have to have a large base plate to cover all of my stoma. ( hope I am not boreing you ). haveing a lary, there is so much to look after, I just get up go on the nebuliser, clean my stoma, bathroom ready for the day. I know from experance that they is not many people that have had our op, and a lot dont want to talk about it but I find it helps a lot to talk to someone that is going through the same, so they can pass on things that they find that helps. well I will leave it at that if you would like to talk more get back to me, are you on facebook as I talk to a friend about the same thing and I could in private give you my email.

Look after your self there is peop;e here to chat to in the same boat.

always helping michael.

Hiya Micheal,

Thanks for your reply.  I too have had a total larry and they had to take out part of my thyroid gland and other lymph nodes etc. My cancer actually blocked my throat and I needed to have a trachie two weeks before my laryngectomy as I could not breath.  The cancer also exited my neck and I had an open wound on the front of my neck.  Before the operation I told the surgeon I did not want opp if it meant doing a flap from my chest, so they were brilliant and just pulled up the loose skin from my chest instead.  I have a large scar from ear to ear which had staples and has healled brilliantly. The skin below my stoma is still quite red but the consultant said I can use base plates once I see speech therapist on Thursday.  I too use a nebuliser but I have been told to use it 4 to 5 times a day.  I bought a power inverter so I can use it in the car as we like to travel a lot.  I have a suction machine from when I had my trachie but have been told I shouldn't need it with the larry.  I have been ordering my supplies from countrywide too.  My neck on the left from the middle to half way up my left ear is still totally numb but specialist said it is nerve damage that should ease in 3 to 6 months.

My massive problem is that they want me to have 6 week course of radiotherapy with a small dose of chemo at start and end of treatment, but the thought of the side effects terrify me. Did you have any radiotherapy after your opp?  I would have to stay in hospital all week and go home weekends as it is too far to do journey every day.  The side effects I cannot deal with are the burns on the skin, mouth ulcers not being able to swallow or eat and having a feed tube inserted and too many more to list.

I know there will be people who say I should just get on with the treatment, as at least i,m alive and it will give me a better chance to keep it that way but I am truely terrified about being poorly and having to live with the long term side effects.

Anyway I will sign off now as I am going on and on.

I hope you are well and keep up with the advice to us who are still trying to get our head round things.

I am on facebook and have an e-mail but not sure how to put info on here so it is not public.

Take care, thanks

Chris x

Hi Joeninty

I just knew you would be so much help even though my friend went through this i am in awe at what she must have done with out us ever knowing. you are a star

big hugs and many thanks Luckyus

Hi Mermaid 1966.

I have just sent you a long book on another thread about radio etc, I see you have a total like me, I think I will give you my email address so I talk better to you, yes I am on facebook also if you want a chat, but talking about our problem is beter on email, if you want to know more I will put my email up for you.

I didny have a lary tube in when I went home yes I had radio, a feeding tube I will have to explain why etc.

hope to hear from you

michael.summerson@tiscali.co.uk.

Hi Luckyus.

Glad to be of help, hope I am helping you as well, the op. I and a few have had isnt nice but look on the bright side I am well and hopefully helping a few more, there are a few things that I have not said but it dosnt matter it outcome is I am better do most of the things I did before.

hope to hear from you again,

michael.

hi Micheal

Funny as it is, you and the others on this post were helping me before you even new i existed i read this for weeks before joining the site. and i bet others are reading this gaining help but never knowing how to join in. I dont think andy new what he started when he posted, between you 4 that were the start of this post you have helped me so so much.

Thanks again and again i still am so grateful

Luckyus

Hi Andrea

Just a quick line as I only have my lunch break to log on as my computer at home takes an eternity to load up.  Just wanted to say that I haven't forgotten everyone and hope that the results on the 22nd are good.  What a terrible wait for you and your husband to endure.

I posted last week and for some reason I kept getting an error message so I gave up.  I must have broken the rules somehow!

I'll keep on checking your posts even if I don't get a chance to join in.

Take care,

Love Marion x

Hi Andy

Sorry I haven't been in touch, as I just said to Andrea (Luckyus) I kept getting an error message when I tried to reply to you both and I only have my lunch break to log onto this site until I get a new computer (hoping Santa might get me one)!

How's it going with the RT?  I can't remember exactly when I started to feel the side affects but it was probably after 15 sessions (which was the end of my first week as I had it 3 times a day).  It all seems like a bad dream now thinking back of lying under that mask.

I have to get back to work now but will be in touch.

Keep us updated and hope you stay well for as long as possible.

Love Marion x

Hi Andy

Sorry I haven't been in touch, as I just said to Andrea (Luckyus) I kept getting an error message when I tried to reply to you both and I only have my lunch break to log onto this site until I get a new computer (hoping Santa might get me one)!

How's it going with the RT?  I can't remember exactly when I started to feel the side affects but it was probably after 15 sessions (which was the end of my first week as I had it 3 times a day).  It all seems like a bad dream now thinking back of lying under that mask.

I have to get back to work now but will be in touch.

Keep us updated and hope you stay well for as long as possible.

Love Marion x

Hi Marion,

The RT is going ok, had my 7th session today and don't really feel much different but have been told side effects will kick in soon so i'm making the most of the calm before storm! Yes it is a bit weird lying under that mask and some days it seems to be tighter than others, got a cold at the moment too but guess its better to get one now than further down the line.

I think its going to be a very quiet christmas for me as I havent really been arranging things as I don't know how i'm going to feel , to be honest couldn't give a damn about christmas this year just want to get my head down and get this treatment over so I can start next year in a better place, so to speak.

Hope all is good with you and the snow isn't too bad where you are, its ok in central london just had a light dusting, lets hope it stays that way!

Thanks for your good wishes

Love Andy

Hi Andy

Glad to hear you're still okay and focussing on your treatment.  You are wise not to plan ahead too much as you don't know how you will feel at Christmas especially as you will be more than half way through your treatment.  It's rotten that you have to go through it at Christmas though.  This time last year my son was going through chemo for testicular cancer and by Christmas Eve his lovely blonde spikey hair was falling out in clumps so he got a friend round to shave it all off.  It was heartbreaking watching him go through all that especially when all his mates were going out and celebrating.

I work in Mayfair so it's great to see clear pavements after slipping and sliding my way down a steep hill to the station this morning and very attractive in my wellies!  It's amazing when you just go a few miles outside London and it's like a winter wonderland.  Whereabouts do you work?

Must go now but keep in touch.

Love Marion x

Hi Marion,

RT was going really well till last sat when I developed a really nasty cold which has turned chest/throat infection which is making me cough constantly throwing 'salt in the wounds' of my already sore throat. Fortunately I can just about swallow so am getting some food down but it is extremely uncomfortable and can only get relief from co codamol my wonder drug! Its weird as I think the chest infection and coughing are worse than the RT as i can't remember ever having anything like this as i'm generally fit and don't get many colds.

I'm having to take some time off from work which is annoying as I wanted to wait till the end of the treatment before I stop working but guess it can't be helped. I work in clerkenwell at a small private health studio ( you asked where I work) which is close to the city, guess i'm not a great advert for personal training at the moment!

have been texting chris, bless him, he's been great, giving me encouragement it really is something when someone you don't know is prepared to go out on a limb for you, mind you guess know each other a little by know except what we look or sound like which in my case is a whisper at the moment. Hope all is well with you.

Love Andy

Hi Andy

Sorry to hear that you have a chest infection at the moment.  I had bad cough during my RT and was worried that I would choke under the mask or move during a cough and get zapped in the wrong place!  I know what you mean about sometimes the mask feeling more tighter sometimes and I used to worry that I was in the wrong position.

I'm sure your throat is getting sorer by the week now.  You may have to take something stronger like morphine - what a wonderful drug that is but knocks you out and adds to the tiredness.

You might have been told that you will feel worse AFTER your treatment has finished.  I was really pleased that my neck was fine and not too red and I even had a little bit of voice then all of a sudden a week after I finished RT my neck was bright red like I had severe sunburn and my voice went completely.  Make sure you use your aquious cream liberally even though your neck might be ok at the moment.

Take care and keep posting if you're feeling up to it.

Love Marion x

Hi Marion,

Into my fifth week and doing ok. The infection has cleared up but am still coughing a fair bit but the doc says that could just be the irritation caused by the RT. I''ve had no voice since I had the infection 2 weeks ago, I guess everything is still inflamed  and swollen with all the coughing etc and told it will come back when treatment has finished, I hope!!! So am whispering to my clients at work which is a bit strange but getting used to it. Luckily I can still swallow solid food even had a sandwich today but finding i'm not enjoying food as much as I normally do. My neck is red but not painful useing lots of creams etc.

So looking forward for this to be over with and am crossing each session of the list, which i'm treating as my advent calender, final day jan 5th!!!! Hope you have a lovely christmas and great new year and thank you so much for all your help and support through out this year, don't know what I would have done with out you.

Love

Andy x

Hi Andy

Thanks for your kind words, I feel very humble but I'm so glad if I've helped a bit.

I can't believe you are still working in your 5th week of RT - I'm sure I was feeling pretty c**p after 20-odd zaps of RT!  Your fitness training has obviously paid off.  Don't worry about your voice, it will come back but it might take a while so don't panic.  I've probably already told you (and I'm sure your onc has told you) that you will actually feel worse after the treatment has finished.  It's horrible that you have to go through this over Christmas but only a week or so to go and you can put all this behind you.

I had a bit of a scare as my voice was quite croaky for the last 2 weeks so I brought my appointment forward to see my consultant yesterday.  Luckily he said my larynx looked perfectly normal and he put it down to the stress of Christmas (phew).  At least it's put my mind at rest and I won't be worrying over Christmas now.

I hope Christmas will be as well as can be expected for you and wish you a very happy and healthy New Year.

Take care and I'll be in touch soon.

Love Marion x

Hi Marion,

Happy new year! Hope you had a good one and all is well with you. Finished the RT last weds and as soon as I finished started to feel worse, as expected. My throat is still sore and i'm still coughing up lots of gunge but things feel like they are slowly improving and i;m beginnig to swallow easier ann the skin on my nexk is healing well.

The obvious thing i'm concerned about is my voice. I'm able to get some growly sounds out of it on the lower register, sounds are starting to come through but its still really weak and it hurts when I speak. Was this the same for you? Guess I just expected to finish treatment and find it all back to normal..wishful thinking!!

I was working the last 2 weeks but felt so groggy and tired my consultant has suggested I rest up in order to speed up my recovery. I feel a bit ragged at the moment but I guess the worse is over now and keeping my fingers crossed that my voice will return soon. I have to back in 6 weeks so I asked the consultant when will I know if i'm cured and he just said this WILL cure it. I hope he's right!

Best wishes to you.

Love Andy

Andy welcome back!  Happy (and healthy) New Year!  Hope your Christmas was as well as could be expected.

I have been looking out for your posts but assumed that you felt like c**p but have been thinking of you and wondered how you are.

So glad it's all over - you must be so relieved.  I can't believe you carried on working so long but as a trainer your fitness probably helped.  Now try and rest and let your body recover!

Please don't worry about your voice, it's very early days!  I can't remember exactly how long it was before my voice came back to normal but I remember it coming back a bit just towards the end of the treatment and then it went completely about a week after it all finished which really worried me as I thought the treatment hadn't worked.  I know my voice was quite good in the October as I went back to work on a part-time basis so that would have been 2 months later but it came back well before then.  When it does come back don't be surprised if it strains easily at first as it will take quite some time to heal.  I remember one of the girls from work ringing me while I was still off work and for the first time in months I answered the phone and she asked to speak to my mum!  She didn't realise it was me and was so shocked as she had never heard my "normal" voice before as it had been husky for years.

I had to wait 8 weeks to hear that the treatment was sucessful and that appointment was the scariest!  You will probably have an MRI scan just prior to your appointment.

Take care Andy and I wish you a complete recovery but I have no doubt that you are cured.

Love Marion x

HI Marion,

Thanks for your reply. Im starting to feel a lot better. swallowing easier, coughing starting to subside and voice making some progress although when I speak I sound about 90! I'm going back to work next week just part time as i'm self employed and need to earn some money so have told clients I will only whisper and not talk too much during sessions!

As you say its early days for my voice and I have to be patient. I always want everything done by yesterday and hate having to wait especially as I havent been able to speak since the beginning of dec, but guess I have no choice. Also looking forward to having a nice glass of wine but will wait till soreness in my mouth has cleared and my voice is back. I've spent most of  this week just sleeping which I think has done me the power of good and i'm lucky that I have a flexibility in my job to come home and rest between sessions.

I'm not thinking too much about the results of the treatment as I've got to the stage now where I can't worry any more and what will be will be, guess I've done all I can. Have a great w/e and speak soon.

Love Andy

Hi Andy

Just a quick post to see how you are.

I can't believe you're going back to work so early but try not to overdo it as you must be still feeling tired.  Has your voice started to come back yet? Do you know when you are having your scan?  Sorry about all these questions!

I've decided to do the "Shine Walk" for cancer research on 1 October - it's an overnight walk around London (either 13 or 26 miles).  My friend who recently lost her husband to cancer has asked me to do it with her.  I'm not sure if we are doing the full or the half one but I'd better get some walking practise!

Hope you're ok but let us know how you're getting on.

Love Marion x