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 Mermaid 1966.

I talk to Luckyus about her husbands cancer, I dont know if she has told you about mine. what cancer do you have, if it will help I will tell you a bit about me. I had throat cancer 3 years ago, it moved about a bit from one side to the other in the space of 6 months, I had throat cancer in my vocal cords, had a couple of biopsys, laser, radiotheropy ETC. to cut it short I landed up having a total laryngectomy ( voice box removed ). it has been 2 years now and I am fine, can talk. if this helps you about what you might have get in touch and I will give you help with any questions you might like to ask, there is a lot of people on this site that can help, like Luckyus and a few more that have people and relations that have cancer.

dont be afraid to ask we are here to help if we can.

look after your self.

Joeninty  Michael.

Hi Luckyus.

How is the husband have you been giving him lots of loving after his bad fall, we men are so strong you women dont under stand how frail we can be. how did princess 1966 get to know you I have sent her a message to see if I can help.

I know what it is like waiting for infomation, I was lucky, I didnt wait more than a couple of weeks, maybe it was because of how bad my cancer had got. are you looking forward to christmas not because of the bad health, have you got any kids, my grandkids have just gone home they have been up for the weekend keep you young.

Well look after both of you good news is around the corner keep in touch.

michael.

Hi Micheal,

I was so glad that luckyus replied to my message because at the time I was so down I thought I was the only one going through all the negative thoughts I felt a bit selfish and ungrateful for the excellent treatment I have had.  Just over seven weeks ago I was admitted to hospital with what I thought was a chest infection. I had never been ill and had never smoked in my life although I did live and work in a smokey environment when I was younger.  I had a camera up my nose and the doctor looked really shocked.  2 days later I had a laryngectomy as I was struggling to breath, they also took a biopsy. Everyone kept saying I would be ok and not to worry about things, and the word cancer was never mentioned.  A week later I was told I had cancer of the larynx and had to have a laryngectomy. After two weeks at home I went into hospital and had the operation . I was on auto pilot and did everything I had to in order to get home as quickly as possible. Everyone said I was going a fantastic job!.

I have been home now for three weeks nearly and I have the most awful feelings that I wish I had not had the operation as I feel like my voice is not good enough to have a proper conversation and unless I get eye contact with the person I am talking to I am being ignored and therefore don't have an opinion on anything. I thought I should be feeling lucky, grateful and relieved but I am frustrated and depressed that this has happened.

My scar has healed well but the skin around my stoma is still inflamed so I have not been able to use the sticky pads and cartridges which I think will be easier.  I cannot understand why I feel so bad and feel ungrateful as I have had excellent medical treatment and my husband has been the best with emotional support and practical help too, he has been at my side throughout.

I am glad to hear you are 3 years down the line and are doing well, I just have so many mixed feelings I don't know where to turn.  I have also refused radiotherapy as the side effects frighten the life out of me, this is all to much to get my head around in 7 weeks.  I hope you don't mind me bending your ear like this as you have probably guessed my feelings are all over the place.

I would love to hear back from you as I do not know anyone else that has been through this.

Thank you and best wishes,  Chris x

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 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 Marion.

I see we havent heard from you for a while, how are you keeping, we have our own club on here with all the people talking to each other and asking for advice on there problems, this cancer site is getting a mine of infomation for people to ask about we ( all of us ) hope that it is a help to people who are going nad have had treatment. I myself are keeping well at the moment but a few are having radio ETC. I like you wish them all the best, look after your self hear from you soon.

michael.

Hi Michael,

Thanks for your good wishes. Looks like your doing a grand job on here offering advice and help, its good to know something good is coming out of this. you sound like a very positive person which I guess is why you are doing well after your surgery. I think being positive is the half the battle fought!

Keep up the gppd work mate

Take care

Andy

Hi Andy.

I see you have started the radio, its not as bad as they say, like I said you get tired near the end, and I found I couldnt swallow and I got a bit red, my throat got dry but I was told by someone to get artificial siliva spray off the doctor ,it worked a treat also I had a diatician who gave my drinks to take to build me up they were not bad to take.

When I went for my mask fitting there was a couple of people that couldnt stand getting one made I understand what they thought, I have got mine in the loft. how are you coping with it all. well talk to you again all the best hope you feel better.

michael.

Hi Michael

Sorry to have left you out the other day but I ran out of lunch break!  Glad to hear you're still doing well.  You made me laugh when you told Andy you have your mask in the loft :-)  I was going to take mine home and jump on it at the end of the treatment but changed my mind as I was sick of the sight of it by the end!

Hope you keep well and keep posting.

Take care

Love Marion x

Hi Marion.

Yes I kept my mask in the loft thought I might face paint it some time, how are you keeping, I just get on with life at the moment. I am talking to a few friends about there cancers simular to mine and passing on what I went through and letting them know how my day goes, it helps I hope for them to see how my cancer is manageable from day to day after the op. I went to the hospital the other day to talk to radiotherapy doctors to give our point of view about how treatment was, what I should have been told, thinking that we should be shown the radio machine before treatment, ETC. they asked if I and a women who had a different cancer could give a talk, they said it helped them alot to understand how we felt.

How is the family are they keeping well, cancer affects everbody else as well at home.

well that is enough of me moaning look after your self.

michael.

Hi Michael

Need a bit of help again!

my husbands anger is getting really really quick and oh so vocal (for someone who is struggling to talk) as i am driving in the snow everything i do is wrong his road rage is apawling  last night the boiler packed up and yup it was all my fault i turned the heating off two days ago arghhhhhhh please tell me this is normal.  did you go through this stage.

Luckyus

Hi Luckyus.

Just got back from blackpool , I think I know what you mean, why is he like this is it because of the treatment he has or will be having. funny thing  the wife and I was talking about the same thing. she says I get bad tempered and shout,( you know what I mean ) its because I get frutrated when I cant get over what I want to say, but as blaming you for everything it is not normal. ask him what is a matter and why it is your fault. my daughters said they had to tell me off for shouting at the wife, and I was bad tempered to her. not being in our position maybe it is hard to see it from our point of view.

Maybe there is another reason for him being bad tempered, all I can say is ask him why he is like this and tell you what is wrong so you can help, also tell him it is hurting you with what he is saying.

if he wont say what is wrong how does he expect for you to help and love him, you can only help if you come to a aggrement to sort it out, and it is not helping your marrage if you dont talk about it.

Let me know how you get on. I know cancer takes people different ways but being in a bad mood isnt helping him to get better.

michael.

Hi Michael

I knew you would have good advice we are still talking through his fears i have tried to tell him im on his side but the anger blows like a bomb and then 5 mins its over. boiler broke down 2 days ago all my fault as i had the shower now its mended it was the excess cold. i think you are right "walk a mile in my shoes", i cannot begin to know what truely goes through his mind only what he tells me.

Thanks for the help and another perspective.

Luckyus