Tongue Cancer - Diagnosed two days ago

Hi, I am a 32 year old single mum to my two year old daughter and I found out two days ago that I have tongue cancer.  I'm waiting for an appointment for an MRI scan and a CT scan which should hopefully be within the next few days and this can find out if the cancer has spread.  I then have to have an appointment to discuss a treatment plan but I have already been told that this will involve cutting out the lump in my tongue and a neck dissection to remove Lymph nodes.

It's all such a lot to take in and I'm trying to come to terms with the fact that in a few weeks time my life will never be the same again.  I have read some horrific stories about what I have to come and I am willing to face any of it so long as I stay alive for the sake of my daughter.  I have only told my parents and one friend so far, no piont telling everyone until I have more facts after the scans but I'm concerned at how far the cancer could have spread.  I have had this painful lump on my tongue for six months but the doctors kept giving me prescripotions for other things which has delayed diagnisis.  I have also had pain in my throat and more recently I've noticed ear ache and jaw ache and neck pain.  I'm trying to stay positive until I know more information from the scans but I know I will crumble if it has spread beyond repair.

From reading stories from others on here and other websites, I'm a little confused that I haven't yet been told what stage the cancer is at.  Isn't that something that could be identified from my biopsy?  How could the doctor be so sure that I will need a neck dissection before knowing what stage it's at?

None of this has come of much of a surprise.  I googled my symptoms of a persistent ulcer back in April, before I first went to the doctor and was alarmed to see the word "cancer" everywhere I looked.  I had all the symptoms but was just hoping I was wrong.  The first two doctors I saw about this reassured me that it was nothing more sinister than an ulcer, which put my mind at rest a little, how wrong were they?!  I am just glad that I stayed persistent and kept going back to the doctor about it.  I don't think they treated it as an urgency as I don't fit in with the usual risk factors, I've never smoked, I hardly drink and I'm not in the right age bracket.  I'm now feeling annoyed at the waiting game.  I want to know when the scan will be.

It helps to come on here and read other threads but I still don't think it has fully sunk in yet but when it does, positivity for the sake of my little girl will just have to get me through.  I would love to keep hearing stories from others or any advice would be greatly received.

Nicola xx

  • Hi Roz Dog, it sounds like you've really been through the mill since your op, but delighted to hear you are home in time for Christmas and looking forward to a bit of Christmas dinner.  Hope you manage to have a lovely day with your family and forget about hospitals and test results for a bit.  Look forward to hearing how things are going in the New Year and wishing you a happy and healthy 2015.  Best wishes, Irene x

     

  • And a happy New Year too! Debbie X
  • you all have a good one too ... and here is to seeing 2015
  • Hello to everyone on here, I wanted to post before Christmas to wish everyone one a good one! This time last year I was really suffering so I'm so appreciative of everything this year! Roz Dog, I was wondering why we hadn't heard from you, I'm so sorry to hear you've had complications with your neck dissection but glad all seems to be ok now. I can image how scary it was to realise you were in intensive care, thankfully you're out for Christmas! It's good to hear that you aim to out all of this to the back of your mind over Christmas, a good way to deal with it. Well done. Keep us posted. Irene, I was pleased to hear you enjoyed a meal, do you think you will be able to enjoy food at Christmas? Hopefully you have a little more confidence with food now, now that you've found something different you enjoyed. I think half of it for me is lack of confidence so I avoid certain foods. I'm pleased to say that my latest MRI scan was all clear! No change in the benign lump in my neck and no concerns with my tongue so the pains must be post radiotherapy related which makes sense, but they wanted to scan me to be sure. I got to look at my scans today and see the cancerous tumour in my tongue before it was removed, very strange! I also had a lovely and helpful doctor explain a lot of things which hadn't been explained before about my tumour and how cancer develops. So this months check up was all good however I've been having issues with my teeth and I had one removed last week on the "good side" a few complications with that as I've had Radiotherapy to the mouth and another blighter of a tooth giving me trouble. I've been back and forth to the Dental Hospital several times this past week but after today's visit I'm hoping it will settle down for Christmas. I really want to enjoy my food this year! Absolutely everything was going in through the PEG last year. I hope all is well with Simon, but a huge Merry Christmas to you all, Vatch, Guzzle, Jo, Debbie, Irene, Roz Dog, and all on this thread. I'm on strong anti biotics for my teeth so no alcohol for me this Christmas but I will raise my glass of water to you all on Christmas Day. Speak soon xx
  • Dear Nicola, just a quick post to wish you a wonderful Christmas (shame about the antibiotics meaning you can't have a sneaky snifter!) Hope you thoroughly enjoy your Christmas lunch this year! Love and hugs to everyone on the thread. . . . see you after the festivities! Jo xx
  • Hi Everyone and a Merry Christmas to you all,

    Well, what a nightmare I had getting back into this site. Finally got back to being logged in and typing a post yesterday on my iPad at work - typed a longish post and the site crashed me out before I hit enter - how I laughed! I gather that others have also had teething problems with the new format? I usually try to embrace change but this really seems to be a case of 'if it ain't broke.......'I have to confess that I gave up trying for a while - it was so frustrating.

    Anyway, how are you all doing? I enjoyed catching up with everybody's news - it's really like going to a party and seeing all your old friends.

    Nicola, sorry to learn of your dental issues. What a nuisance, especially at this time of year - I hope they don't interfere with your enjoyment of the Christmas fare. Plenty of gravy sorts most things out - not much good on mince pies though - how I yearn for a hot mince pie and cream! It's great that your latest scan was good news again - that's nice news to take into the festive period, speaking of which, I bet your daughter is excited, not only with what Santa brings her but also with having her mum so much healthier than she was last Christmas.  Speaking of which, what a long way we've come over the last twelve months - a few ups and downs along the way but ultimately in a better place than we were at this time last year.

    Guzzle is still keeping to form as Mr Motivator - top man! Vatch continues to make progress and everyone else seems to be slowly moving in the right direction. Poor old (or should I say young) Roz Dog he's been through the wars but hopefully he's on the right track now. Irene, Jo and Debbie are still an inspiration to us all - thank you to you all for being such a great bunch over the last year.

    I'm in a generally good place. My night-sweats have returned though and it's been blamed on a thyroid problem (can't remember if it's over or underactive) which is likely to have been caused by the radiotherapy. I've got another blood test in February whereupon they tell me that I'll be on medication for the rest of my life which will hopefully sort the issue out for me. I still get fatigue and have insomnia most of the time (you'd think the former would cancel the latter out, but alas no). Most importantly, all my check-ups have been clear. Eating going fairly well, no bread, chips, curry or black pepper of course but at least I can eat and taste which is more than I could comfortably do last year. And no PEG tube this year!

    Anyway, I'm going to hit enter before this darn site crashes me out again.

    It just remains to say that I wish you all a very merry, peaceful and, above all, healthy Christmas, and let's continue with the good progress in 2015 - especially you Roz Dog.

    Simon XX    

     

     

  • Welcome back Simon!  Can't tell you how delighted I was to read your lovely post and catch up with your news.  

    Sorry to hear about your thyroid problem and hope the medication does the trick, but great news that your check-ups are clear and you are eating reasonably well - what a gigantic step forward from this time last year eh?  Like you, I never eat bread at all these days, but I am managing a few chips now and again (sweet potato ones are even better)!  I am completely off chocolate (and still can't believe I'm saying that having been such a chocaholic).  I thought I might try a Quality Street last night just to see if anything had changed, but it still tasted all wrong, sort of salty but can't really decribe it.  I've turned into a bit of a trifle addict (those ready-made individual jobs from the supermarket) so have made a HUGE one for this afternoon and am looking forward to it more than the turkey and trimmings, but I should manage some of that too - with lots of gravy and bread sauce!

    Have a wonderful Christmas everyone, and a happy HEALTHY 2015.  

    Lots of love

    Irene x

  • Folks I need some help....I'm talking to chriswat who's as a post cancer of the oropharanx.....she is in a bad place and needs people talking to her to prove that it does get better....if you can help me I would be grateful

  • Vatch,

    The details of the post oropharanax cancer person was omitted from your post - any other way you can put her details on? I'm happy to drop her a line. I tried your recent activity but couldn't find the relevant thread.

    Laters

    Simon