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 thanks for your kind message its good and bad news as you will see from my post to marion. Will keep you up to date on my progress. Hope your not reading this and thinking oh god all this is going to happen to us as I'm sure it won't.I just think i've been unlucky in terms of the laser treatment not working and remember everyone responds differently to treatment. I'm sure your husband will be fine with laser alone. All the best for his treatment and keep us posted on how he is getting on.

    Best Wishes to you both

    Andy

  • HI Joeninty thanks for your message. Hope all is good with you.

  • Hi Joeninty

    My Husband is 55 years old i had a friend a few years ago that went through vocal cord cancer and had a full larnxoscopy (which i belive you have had done). so we are in this with our eyes open!! it is only with the knowledge of our friend that my husband went to the doctors so early (thank goodness). My husband will ask me the odd question as he knows i have read a lot of info (like you do) but he won't say a lot ( i still think he is in total shock), i think this is why i found all the post so helpfull it makes you realise there different people in all the different stages, willing to talk (well type but you know what i mean).

    Best wishes Luckyus

  • Hi Zarker

    This is the problem with cancer there is no easy answers i am sorry you got such good and bad news yesterday .i have read this whole post through many times before even registering and its the open honestness that i needed i also know every persons journey is different and we will see where our journey takes usgood and bad.

    thank you for taking the time to reply life is so busy and you are all going through so much i am just so gratefull to have a place to "talk"

    thanks Luckyus

  • Hi Andy

    Sorry to hear that the news wasn't really what you wanted to hear but you are at a very early stage and there's no sign that it has spread so I'm sure you have an excellent chance of a complete cure. As you know, I was staged at a T3 + 1 lymph node and I was given a 95% chance of cure so hope you find that reassuring. Looking at everyone's posts I've noticed that we seem to all have had it on the left vocal cord - that seems like a bit of a coincidence! It's good news that you only have it in a small area.

    Your consultant / oncologist will probably have told you what to expect in terms of your treatment. You will probably have an MRI scan first, next they will take a "mould" of your face to make a radiotherapy mask which fits very snugly over your face and neck and it then attached to the RT bed to ensure that you don't move. The RT itself is completely painless and takes around 15 minutes. You may remember that I had it 3 times a day for 2 and a half weeks so I felt the side affects after the end of the first week. You will probably get the weekends off to give you a break from it. The main sympton you will have is tiredness. I used to be overwhelmed by fatigue and slept a lot from the second week, often having to be woken up for my next dose!

    It won't be an easy ride but at least you know that this will be the end of it once and for all and hopefully you will have your voice back to normal at last! Strangely enough, I too felt relieved in a way when I was finally diagnosed and I had been going back and forth for check ups, biopsies and lasering for the previous 4 years. My two sisters were with me and crying their eyes out at that appointment and I had to comfort them! I seemed to get this inner strength and thought "right, I got it and now I'm going to get rid of it once and for all!"

    It's so nice of you to say that I feel like a friend, I feel very touched and humbled. I feel the same - it's amazing that you can get to know people by sharing the same experiences and knowing that you are talking to someone who knows exactly what you are going through. Everyone on this particular subject has been very kind, helpful and supportive.

    Let us know how you are getting on. I know there will be a time in a few weeks that you may not feel like posting but be assured that I (and I'm sure the others) will be thinking of you every step of the way in your journey.

    Sorry if I've waffled on too much - as you can see I like to talk

    Speak to you soon.

    Love Marion xx

  • 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

Reply
  • 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

Children
  • 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 Michael,

    Thanks for your message sorry its so long getting back. Yes have had the mask made and start on mon. I  am feeling a bit nervous but just want to get on with it now and get it over with. Thanks for all your advise and help will keep you in touch with whats happening.

    All the best

    Andy

  • Hi Zacker.

    Like I said it is nothing having the mask fitted when you have your radio. you get used to it just go in let them fit you to the table and forget about it, it dosnt hurt or feel anything, the only down fall is you get tired at the end of the treatment, but you will get over it soon. Lets hope this is all the treatment that you need, being one who has had it they dont usually advise it unless they think you need it. let me know how you get on.

    All the best

    michael.

  • Hi michael,

    Thanks for your message. Have almost completed the first week of RT and not really feeling anything yet as its early I guess, think in another week will start getting side effects. As you say its not too bad once you get used to the mask and all the staff and facilities at the hospital are very good so I'm in good hands. Will keep you posted on how I get on. Have a great w/e.

    Andy