vocal chord cancer (T1) laser treatment, need advice

Have had laser surgery in sept for early vocal chord t1 cancer and was told it was successful but a month ago I had a check up which revealed there has been a reacurrance ( though only small and on the surface) so have had more laser surgery in the hope that will do the trick as the surgeon says its too small to warrant radiotherapy. Has anyone else had this kind of treatment and is this usual?( reacurrance and more lasering). I'm very concerned that this treatment may not be working or that cancer may keep coming back, resulting in radiotherapy and the possibility of eventually loosing my voice box. I know its early days and I'm probably worrying too much but would be very grateful if there is anyone out there who can comment on this.

Parents
  • 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 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.

    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

  • Hi Luckyus.

    Remind me what he has had latley, has he had just radio, or a biposy ETC. or is he still waiting for results, I ask this as I talk to a few friends about cancer I dont want to get them mixed up. like I said he may be worrying about his cancer outcome in the future and doesnt want to talk to you about it, I was the same I didnt talk to the wife about it, but that is how I am.

    Is there something that is worrying him that you might need to ask his doctor about, something that he has been told and didnt want to talk to you about. thinking back I didnt think I would have had a major op. like I had, but being better and being able to talk helps a lot.

    let me know how it goes, we all dont want this but there is not a lot we can do, getting help from family needs to be allowed.

    michael.

  • Hi Michael

    he has just had lases treatment on his vocal cord (nov 10th) and get results 22 dec so i know he is worring. and he has just given up smoking. now i think about it have not praised him for that, i was just so angry that he ever smoked as i haven't and hated it. mabe i am just expecting to much from him to soon. he says he is confident the cancer has gone and this is the end of it. But deep down i know he is afraid he asks me questions all the time as he would never dream of looking things up he burries head in the sand a bit.

    Thanks once again

    Luckyus

  • Hi Luckyus.

    When he had laser on his vocal cords what did they say it was at. was it T1-T4. I had 6 weeks of laser, I will not go into what happened after. Like I said I never smoked but still got throat cancer, the specialist asked at the first diagnosis how long I had smoked for they seem to ask this straight away when you got to see them as a few of the people I have talked to get asked by them.

    I have been talking to a lit of people who find it helps to talk about what to expect as in my case, EG. what happened as I went along, as I said my problem got worse the more I went for bipseys I was in hospital for 3 of them and my cancer had moved from one vocal cord to the other side in a matter of 6 months.

    Doctors dont tell you much, have you asked him what he thinks if the news is not what he expects, does he use a computer, when I found out about my news I was on the computer to see what I could find out about the stage of my cancer and what may happen in the future, some people get frightened to look but I then had it in my mind what may happen and it helped me to understand what may happen in the future. get back to me and let me know how you get on, I can see not knowing isnt helping but what might happen in the future can upset him try and get him to talk about it, I get a lot of people emailing me to talk about it and I hope I can help with going through it

    michael.

  • Hi Lucky us,

    been reading your threads. I honestly think if they had found something that concerned them they would have had your husband straight back in to do more surgery or at least tell you whats going on so it could be a case of no news is good news. When they first saw your husband they would know just by looking if there was anything that needed immediate attention and the delay is probably just for healing. When I had my first laser they told me a week later it was T1 and that they would be doing more laser then keeping an eye on it. I expect they will have a look at it with the endo scope on 22nd to see how it looks after the surgey and if it looks ok they will leave it for the monthly observation. Thats what happened after I had the second laser they just said as far as they could see it looked fine and just told me to come back in a month, of course subsequently I have had more problems but everyone is different perhaps your husband will be lucky and the laser will be enough. Try not to worry and avoid looking at articles on the internet they are not representative and in my experience cause panic and are not helpful although I'm sure michael means well by suggesting it.

    I'm doing ok have got a nasty chest infection which is making the RT more difficult, bad timing I guess. Good luck for 22nd keeping everything crossed. :-)

    Take care

    Andy

  • 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

Reply
  • 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

Children
  • 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

  • Hi Marion,

    Thanks for your message. Unfortunately I don't have much choice about going back to work as I have a mortgage to pay and  have my business to run which won't work without me  and I can't live on £62 a week sickness benefit. I'm only training 4 clients a day and live very neatr my wotk so I can come home and rest between clients and am finding it ok.

    I actually felt worse sitting at home worrying about things as I love my job and I think having a routine is helping me feel things are getting back to normal. The downside is I don't have my voice back yet and my throat is still a bit sore, its been nearly 3 weeks since I finished the RT and am not sure if this is normal as most people tend to get it back towards thre end of tretment. I mentioned about working to the consultant and he said I need to rest my voice but i told him i'm only whispering and working part time and he seemed to think this would be alright. I'm wondering if i'm straining it by working, there's no one to ask as my next appointment with the consultant isn't till mid feb.

    Anyway hope your well

    Andy x

  • Hi Andy

    It's a shame you had to rush back to work but I do understand the money thing.  I was really lucky as my firm paid me full pay for the time I was off - although it was only 10 weeks in all.  I know what you mean about sitting at home worrying as it was at that time that I became depressed.  I needed to get back to work for normality.

    Try not to worry about your voice Andy - we are all different and there's no set time for when it should come back.  I've met quite a few people now through clinic appointments who have had some form of throat cancer and they can all speak.  In fact, I probably already told you, my voice came back and went again for quite some time which really freaked me out!  It's strange but my consultant told me not to whisper as it still strains your vocal cords but I'm sure you will know if you are pushing yourself too hard.  I can really understand your frustration though.

    I put my photo on my profile so that everyone can put a "face to a name" but for some reason it's not showing (must have done something wrong)!

    Anyway look after yourself and let me know when you get your voice back - hope it's soon!

    Love Marion x

  • Hi Marion,

    Yes would have liked to have had 10 weeks off on full pay! but like you said its much better to be doing something and I feel ok in my self apart from the voice. Its so frustrating as I really love my job and this is the time of the year I could be picking up new clients but I can't really take anyone on at the moment sounding like this.

    My present clients have been wonderful and are ok with me whispering and tell me to shut up if I;m talking too much! Guess I have to patient and wait for everything to heal. I spoke to my consultant's assistant today who said this was all normal and consistent with post radiotherapy and also said it was ok to work as long as i don't over do it.

    Would be good so see a photo of you and put the face to the name, will try and put one up of me.

    Thanks again marion and hope all is well with you and will certainly let you know when my voice is back then we can arrange a get together with chris :-)

    Andy x