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!

I know what you mean about avoiding social situations, I went through all that. I found it was better when I was with close friends who knew the problem and didn't always open the conversation with 'whats wrong with your voice?' You might find that telling people you have a problem with your voice will help you feel less self conscious and able to relax more as being tense is not good for the voice.

I had a check up 6 weeks after treatment and they put the camera down and said there and then that it had worked, I think they can tell just by looking at it weather it looks normal or not. however I also had a CT scan just after which actually properly confirmed it so that really helped put my mind at rest. They usually do what they call a base line scan which they will keep for future reference and can be compared to future scans to make sure nothing has changed. Fortuantely all the check ups i've had since have been clear and on my last one they didn'rt want to see me for 3 months which seems encouraging.

I went back to work too soon as I work for my self so no sick pay so I was working 2 weeks before I finished my treatment, and litrarally just whispering, however about a week after I finished the treatment I started to feel  really crap and just couldn't stop coughing so I stopped working for about another 10 days then I went back and have been working ever since. I probably wouldn't have gone back so soon if i didn't have to but strangely I  think going back helped me get better sooner as I got sick of moaping around at home!

I did and still do get tired but luckily I live near where I work and my hours are flexible so I can come home in the afternoon and sleep for a few hours before going back to work in the eve.

The main problem I had with the treatment was a masssive build up of mucus which caused constant coughing and throat clearing, I used to wake up at night coughing all the time , it drove me mad! Its a lot better now but yes I still feel like I need to clear my throat. Try not to unless you really need to as its not good for your voice. Really hope things improve for you soon, just give it time and you will feel better. Feel free to join our group as you can see we have all been huge support to each other as I don't think people really understand how we feel unless they have been affected by it.

Take Care

Andy

Hi there,

Regarding insurance I just got a basic cover and didn't mention the cancer, I think travel insurance only really covers you for things that happen to you while your there eg, accidents, lost luggage, flight cancellations etc, these things are much more of a risk  and to be honest its unlikely now that your husband is going to become ill as a result of the cancer while he's away especially as he is having clear scans.

I'm probably sounding a bit lapse but from what I have heard from people who do declare past illness's the insurance companies always find a way of not paying out and will charge you a fortune for cover, I got quotes of up to £300 for 1 week!!

Don't let what I have said sway you though, you must do what you think is right for you, its just my opinion.

Glad to hear your husband is doing so well and have a great holiday

take Care

Andy

Have a fab holiday Marion and yes lets get together when you get back>

Love Andy x

Hi Zarker, Thanks again for your response, it has put my mind at rest knowing that tne voice issue is par for the course! I often feel like i have mucus at the bottom of my throat and try to clear it but nothing happens, like you say it is probably some swelling that feels alien and makes me feel i want to try and clear it. I do a lot of running, i actually ran my way through treatment! but i have been suffering with asthma, i have got a little tight chested in the past but nothing on this scale, if i forget my pump before i run its a nightmare! my gp thinks its probably due to swelling and irritation of the airways and should settle down again? When i had my CT scan after being diagnosed they said my tumour didnt even show on the scan! it was originally to check elsewhere in my body, so my question was if it is not showing where you know i have it, how can you be so sure in other parts of my body! But apparntly my tumour is flat, not a lump, it spread along the surface area, and therefore less likely to show up.

I still run most days, sometimes i feel really good and other days i struggle, i think it really helps me mentally and physically, i swear it helped me cope with the treatment, and saw a piece on the news last week about how they are recommending excersice for cancer patients these days! As you probably know i was diagnosed 3 days before this years London Marathon, and as a twist of fate i was running for Macmillan! I still ran my best time, 2.46.23 and came 340th!

Thanks again for putting my mind at rest and it also helps to know that it is quite straightforward when i go back on the 30th for my results, fingers crossed!

All the best, Steve.

hi

can anybody help me out there please as ive explained in my previous posts my husband has had t1 laryngeal cancer and had laser treatment went back 2 weeks ago for a check up and he is now going back in for more laser on the 22 aug and also biopsies to see if the cancer has returned, but the las couple of days he has being having a pain in his right ear has anyone out there experienced anything similar.

thanks again for reading xx

Hi Lornawales.

I had the same as your husband, I had radio for my cancer after 2 biopsys , I had lazer on one side of my larynx and after a couple of months it had moved to the other side, the soreness could be because of the lazer it might have made it swell a bit, there is a lot of nerves around the larynx.

Whebn he goes to the hospital ask the doctors about it .

I live in north wales.

joe ninty

thanks joeninty i will so did you have laser first before raditherapy? they have said there is another lump there but not sure wot it is that why he is going in again to liverpool next week. we also live in north wales.

Hi Lornawales.

Yes I did have lazer twice before I had radio, they thought that the lazer would get rid of the cancer on my right vocal cord, but they sugested I have 6 weeks of radio to clear it up,

My neck was a bit swollen after the lazer but it went down after a couple of weeks, it affects people differently, some I have talked to dont have a lot of discomfort after treatment.

do you live near the wrexham hospital, where I had all my treatment, I see they have moved a lot of treatments to other hospitals since I had my op.

let me know how you get on. my treatment was a bit more than that.if you want to know anymore get back to me.

joeninty.

thankfor your post will keep in touch with you. no we live in caernarfon and can only have laser in liverpool.

will speak to you soon keep well

Hi Steve, very impressed in several ways about your marathon run this year.

All the best for the 30th

Jelo

Hi Steve, very impressed in several ways about your marathon run this year.

All the best for the 30th

Jelo

well not long to wait now my husband going in tomorrow to livepool having laser and biopsies done on monday

jusdt got to wait now to know what the lump is .

im slightly worried as just the last few days the pain in the ear has gone but says he cant hear through it !!!!

hopefully im worrying for nothing will let you all know the outcome next week

love to you all keep safe xxx

Hi Lornawales.

Hope everything goes alright next week, I know what it is like waiting for news, how long will it be before they give you the results after the lazer,

Tell you husband we all wish him all the best.

joeninty.

lothanks joeninety

i really dont know how long weve got to wait but i hope not too long

thank for the support will come back with some news next week  xxx

lorna wales

Hi Jelo, Andy and Marion, hope you are all well and hope you had a great time in Zante Marion! The good news is my voice has already started to recover, it had virtually gone altogether and was at its worst a week ago, but it just seemed to start coming back one morning all of a sudden! It is not perfect by any means but i can talk and be understood so it has come as a huge relief, although like Andy it does seem a bit deeper and i was deep anyway!

I am wondering if anyone knows about the effect of radiotherapy on red blood cells? I know it can reduce your cell count, as i was checked weekly during treatment, and this is part of the fatigue issue as these cells transport oxygen around you body, but i still find training hard work, i get to a point in my running and just have to stop, which is very unlike me! I know i am only 5 weeks out of treatment and probably ecpecting too much but does anyone know how long the blood takes to get back to normal?

I have my 6 week visit a week today and hope to get my first ALL CLEAR!!  Fingers crossed although i am starting to get really nervous now........

Hi Lornawales

I got back from holiday last week and haven't been on this site.  Just wondered if your husband got his results back and hope it's all OK.

Marion x

Hi Topstriker

Thanks, I had a great time in Zante thanks - nice and relaxing apart from breaking my little toe by stubbing it on the corner of the bed!

I hope you got on alright at your 6 week check-up - can you let us know please?

It's great that your voice has come back so soon, hopefully it will continue to get better and stronger by the week.  I was lucky enough to get my normal voice back although I can't hit the high notes any more when I try to sing (which must be a huge relief to my family)!

Regarding radiotherapy and tiredness, I'm afraid that I don't think I've ever fully got over the tiredness but then I'm not super fit like you and Andy (and I'm getting on a bit as well at 54!).  I think 5 weeks is very early though and you might be expecting too much, which I can understand must be frustrating for you as a runner.  I used to fall asleep in the afternoons quite a lot in the early days post-treatment but that gradually eased off and I was back to work 6 weeks after treatment.  I don't know if there is a time limit for the radiation to get out of your system but personally I didn't really feel "back to normal" for about a year or so.

I hope all was well at your check-up and I have accepted you for personal messages so you can ask anything you like.

Love Marion x

Hi Marion, pleased you had a great time, minus the toe injury of course! I bet that hurt! Yes my check up went well, had the camera down and no sign of the tumour! The consultant did say that if it was to return it is 76% more likely to do so in the first two years, so i have monthly checks up til then. It was a strange feeling, i felt like saying "are you sure you looked in the right place" as it was a guy i had never seen before! he also put the camera down my left nostril not my right, as i had the tumour on the right side, those little things play on your mind, do you feel like that?

I am still struggling with fatigue, i coped so well during treatment that i expected to bounce back quickly, my occupational health people said it is far too early to go back to work, i am a postie, very physical job nowadys. I also suffer with gilberts syndrome, a mild liver dissorder, unforunately the main symptoms for that are also fatigue and my 'count' at the moment is the highest its ever been at 44, normal people this about 15-20 and i usually run at 25-30, it doesnt require any treatment, the liver just gets a little behind in processing dead red cells from the body, so they stay in the system longer than they should.

My voice i would say is pretty much back to normal as far as i can remember!! I am not getting too carried away at the moment, it is a huge relief, i think i was more pleased for my mum than for myself, but i think i will grow in confidence the more all clears i get!!

Thanks to you all for such great advice and support and i am more than happy to pass on my experiences to others who are starting out and having concerns.  Take care all. 

hi marion

thanks for your post glad you had a good holiday but for the toe!

we are going back tomorrow for the results of the last biopsy which he had 2 weeks ago. i am hoping all ok the consultant seemed v positive saying he thought it might be just a polyp here hoping!

but saying that i dont know if anyone can help but my husband seems to be getting v tired lately, hes starting to admit himself.

i know you shouldnt think too deeply into things but i cant help worrying he is also complaining of back pain,(could be me overeacting i suppose)

but we are having another cat scan on fri so this should shed some light on things!!

thanks to anybody who takes the time to read this as im probably just going on and on !

take care

love

lorna xxx

Hi Topstriker

Great news that all was well at your appointment.  Don't worry about which nostril they put the scope in as they can see the whole larynx with either nostril.  My consultant always asks me which one I prefer and funnily it seems more comfortable on the left side - that could be down to my broken nose though!  Speaking of breaks - yes my little toe is very painful and hurts with my shoes pressing against it. I'm doing a 13 mile Shine Walk for cancer research on 1 October so I'm not able to practise which is worrying!

Sorry to hear about your other illness, I have never heard of gilberts syndrome.  I know it's frustrating been so fatigued and not having a lot of energy but it's all normal and will get better over time.

I wish you well and let us know how you are getting on from time to time.

Take care

Love Marion x

Hi Lorna

I hope the results were good yesterday.  It's all such a worry waiting around for results and that could be the reason for your husband's tiredness rather than anything sinister.

It's hard not to jump to conclusions with every ache and pain - I do it myself all the time!  Any pain in my neck or hoarseness in my voice I used to automatically think the cancer had come back.

Let us know how he gets on.

Love Marion x