Tiredness

FormerMember
FormerMember
  • 11 replies
  • 9 subscribers
  • 97409 views

Hi everyone, I've recently been diagnosed with carcinoma insitu of the larynx, everything is on hold at the moment due to the pandemic, I'm looking at either laser treatment or radiotherapy, my voice seemed to get a little better after the biopsy in Feb, its worse now, it tires me out talking, I get out of breath alot mainly through eating, I'm due an xray in a couple of weeks, my consultant doesn't think that it's related to the carcinoma, has anyone else got or had these symptoms, the waiting around is really starting to get to me now.

  • Good evening 9973bw, sorry to hear about this, I never had these symptoms as mine was a lump on my neck that appeared from nowhere. If I was you I would ask to push for an earlier appointment for your x-ray as you have been waiting for a long time for treatment plus getting out of breath is not normal. I know things have been tricky lately with this Coronavirus but I believe that hospitals are now getting back to some normality. In my opinion, the sooner you are looked at or treated the better it is for all concerned. I'm not surprised the waiting is getting to you and I think you have been very patient in the circumstances.I hope you manage to get seen earlier, all the best, take care.

                                                                    Chris.

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • FormerMember
    FormerMember in reply to chris2012

    Hi Chris, I've been pushing, the trouble is I am registered as a private patient atm, and all private practices  are on stop, initially the wait for a referral was up to 30 weeks on NHS, so I used my husbands insurance. but I've spoken to my consultant and providing the paperwork is in order I'll have a langrasopy nxt week, my case will probably have to go back to MDT ? Board again then by then hopefully I'll be under the NHS and I can get treatment fingers crossed, thank you for your reply Chris, I hope your well also.

  • Thats great you have been chasing which is why you are having your laryngoscopy next week which will help them so they can look around the larynx area. Yes, i expect they will have an MDT (multi-disciplinary team) meeting afterwards to come up with a treatment plan. I'm sure it will not be long now before you start treatment. I'm all well thanks, fingers crossed for you, please let us know how you get on, best wishes,take care.

                                                                         Chris x 

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • FormerMember
    FormerMember

    Hi 9973w

    Yes I had laryngeal cancer and also no speaking voice and yes i did suffer with being out of breath.This I now believe was after seeing a speech and language therapist was down to me not wanting to feel like a was straining my larynx and not breathing correctly.

    I appreciate this may well not be the case with yourself and the X Ray is a good idea and will get to the bottom of it ...hoping for good clear picture and no other symptoms. If you can or indeed are seeing a speech and language therapist I hope you find their help as valuable as I did.

    Take care and wishing you the best 

    I am now 6 years since end of treatment (radiotherapy my tumour was too large to laser away ) all well now ..voice normal...so hoping the same for yourself.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi 4756ron

    That's great news I'm so glad you have had great results Slight smile

    No I haven't seen a speech therapist yet, my consultant suggested it after treatment, I do speak, I have bad days and not so bad days as in sound variations! I definitely can't shout, raise my voice or sing (but to be fair I never really could sing) lol, but it does feel strained whilst talking, not painful, the only pain I get is earache on that side a a slight sore throat.

    xray was quick, so hopefully in a week I'll get the results, 

    Take care of yourself also, thank you for your reply.

  • FormerMember
    FormerMember in reply to chris2012

    Hello again Chris 

    Yesterday didn't happen, the date given to me was a guideline apparently still through the private sector, but I did have the xray today really quick process and I also had a call from the General hospital, I have an initial telephone consultation on the 8th of June, same consultant as I have been seeing, so at least I am in the NHS system now, hopefully things will start to move forward from now on, thank you for your help Chris, there doesn't seem to be alot of support around for this type of cancer, have you found that?

  • Hello 9973bw, thanks for the update, you are right once you get into the system things should start moving fairly quick, there is not a lot of information or support in the larynx area, as I say I don't know a lot about it as my voicebox was removed quite hastily as mine was aggressive cancer, so I know more about having it removed and the ups and downs of it all. But i will be here should you need help as i have had two other cancer ops to do with head and neck. Hope all goes ok for the 8th June, it will be interesting to what he comes up with for your treatment. All the very best, take care, speak soon maybe. 

                                                              Chris x 

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • Hello 9973bw,

    I don't how or why but I have only just read your message, but I do have difficulty navigating this site. However I was diagnosed with Squamous Cell Carcinoma of the larynx in Feb this year. Because it had spread within my larynx it wasn't possible to carry out laser treatment and instead I had 20 fractions of Radiotherapy over 4 weeks that ended on the 21st April. On Monday the 1st June I had my first post treatment check up and was told that I was progressing very well.

    During my initial consultation's my voice had deteriorated and following a biopsy I could only whisper. The whisper lasted throughout my treatment, but 2 weeks ago  my voice slowly returned to normal. 

    I now feel very well, eating most foods and the only side effect I still have is a dry mouth during the night that is rectified with "Xylemelt oracoat lozenges" that were recommended by other members of the support group.

    Myself and my wife are both positive people which we believe is a great help.

    Very best wishes for the future

    Allen

    • Sparks 41
  • FormerMember
    FormerMember in reply to Sparks41

    Hi Allen, I'm sorry this has taken me so long to reply, I to small having difficulty navigating this site! That's great news, how are you feeling now? A few weeks on?

    I have another biopsy for 6th of July, that's the second the first in Feb, but I am now on the NHS, so that's good, my voice is awful still, but it's to be expected I guess, I hope your doing well.

    All the best Allen

  • Hi 9973bw, 

    Pleased to hear that you are now in the "NHS system" and progress will now start to happen. Following my Biopsy in January it was approximately four weeks before I was given the results of the biopsy (Squamous Cell Carcinoma of the larynx).

    Having been informed of all the possible side effects of Radio Therapy, I didn't find the fractions (sessions) too difficult and four weeks after the fractions finished I began to recover from the unpleasant side effects. 

    It's now nine weeks on and my progress has been very good, I have regained my weight loss, I can walk two plus miles up inclines without getting out of breath or tired. My voice has returned without the aid of speech therapy, my night time dry mouth problem is improving, my throat is back to normal and I eat most foods although I avoid spicy meals. One of the big milestones for me is that I now have an interest in my hobbies again and I'm able to enjoy life, within the restrictions of Civid 19 of course.

    I sincerely hope this information will help you through the months ahead and I wish you the very best for the future.

    Please let us know how you are progressing and don't hesitate to contact me if you feel I can help.

    Allen

    • Sparks 41