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Tongue Cancer - Diagnosed two days ago

Nicola2209
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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

  • Offline in reply to Meerkat@65

    Welcome back Jo,

    Good to hear that things went well. You were missed.

    Pets can be very therapeutic (as can spouses).

    Take care and good luck for your recovery.

    Simon xx

  • Offline in reply to SimonSmith

    Hi Simon

    Just realised I missed this one when I last logged on, sorry!  I had Nystan when I was in hospital during my treatment phase.  This time the GP has given me Fluconazole and the antibiotics are for the chest infection.  I think I'm beginng to feel a bit better but still coughing like mad night and early morning.  Yes it sounds like we all share the 'no black pepper or spicy food' problem.  I see Guzzle managed a Korma recently so I may give that a try again sometime.

    Cheers, Irene x

  • Offline in reply to Meerkat@65

    Hi Jo

    Glad to hear your operation is now behind you and hope you have a really good and quick recovery period.  Sounds like you are being well looked after by partner and dog!  Braised liver?  Oh no!  Your sense of humour is still intact!  Don't overdo things and get well soon x

  • Offline in reply to Meerkat@65

    Hi Jo

    Good to hear from you and glad to hear that all went fairly well.  I can imagine how you looked as my nephew was ina medically induced coma last year with a serious case of pnuemonia and as you know only too well tubes were going in and coming out everywhere.  Perhaps if Dynorod read your post they will consider expanding their area of expertise.

    Glad to hear bth dog and partner are looking after you so well although I really think partner might have missed his calling is he is offering you liver after what you have been through.  Perhaps a stint on the comedy circuit should be calling to him.

    Take your time and rest and hopefully you will feel better soon and if you do not like tennis or football I would say learn to like at least one of them as that is all that seems to be on tv for the next couple of weeks.

    Best wishes.

    Gill

  • Offline in reply to SleepyCat

    Done my 50 mile spin thinking of you all. Clatterbridge hospital was a major beneficiary . Even had a post ride beer!

  • Offline in reply to Guzzle

    A very well deserved post ride beer.

    Gill

  • Offline in reply to isjheatherlea11

    Hello everyone,

    The PEG is out! Horray!!!!

    I was walking on air afterwards, I felt so happy! I surprised myself at how big a deal it was, I feel so normal again for the first time in almost a year! I don't miss it at all but I do find myself sitting, bending, dressing etc as if the peg is still there! The little hole healed within a day or so and the procedure went well (apart from the very miserable and unfriendly doctor!) they put the sedation in and I was out for the count and I didn't wake up for over an hour! Not sure if I was just sleeping? I was pretty tired! Very different to when they tried to put the peg in the first time, I remember everything even though I was sedated.

    Firstly, massive welcome back to Jo and I'm so pleased the op seems to have gone so well. I did laugh about the liver dinner, a little insensitive of them too though. However your sense of humour remains in tact! I hope recovery is going as well as can be expected and that you are being well looked after (I am sure you are). Hopefully you enjoy Tennis, as there's a lot of it to watch at the moment whilst you're recovering!

    Simon, you are right in saying that by being a little assertive about this can help. If I hadn't of asked about seeing my surgeon recently, the biopsy would have gone ahead last week and I would be worrying about the results now as well as dealing with a sore tongue. I also wouldn't have gone ahead with the peg removal either, so I'm glad I made myself heard!

    Irene, sorry to hear you've been suffering a little recently. I suffered with thrush two or three times during and just after treatment, I seemed to be on anti biotics forever. I have also recently just finished a course of the stuff beginning with "NY" (can't remember the whole name!) it seems people like us will be prone to it now, according to my nurse. I hope it clears up for you soon. I still get down too about my lack of enjoyment for food. Curry is a definite no, wine is ok if it's rose, with lemonade that's not too cold or fizzy. I have many restrictions and although things have gradually improved, I'm not convinced it will get any better than this for me. We are all different though. I struggle to swallow foods, they seem to get stuck in my throat, that's where the enjoyment is spoiled for me. Others have managed curry etc again, hopefully that will be us too in the near future.

    Gary, you seem to have coped amazingly well with treatment, I could never of contemplated exercise so soon! I hope your recovery is still going well. Any luck with travel insurance yet?

    Gill, sounds like you have supportive employers who are helping you with your return to work.  I hope it is still going well although probably tiring. It's a shame you have gone back to work whilst we're having such lovely weather!

    Speak soon everyone,

    Nicola xx

  • Offline in reply to Nicola2209

    Nicola, delighted for you. Having read a lot I think more and more food enjoyment will return. I'm not there with wine. To be fair with excercise I had no peg fitted which made it easier for me. I have only done a korma by the way which barely counts. I suppose its baby steps and trying things. Just had mushed up honey and banana on toast for brekky. That worked! Pancakes are good! Developed a sweet tooth. Not good! Travel insurance is still ridiculous so early post treatment. I think it will be a case of using what I have having disclosed everything to them. I am covered for everything apart from this. Next up is to think about when to go back to work. Any thoughts? I am 2.5 weeks post treatment. IM not quite ready yet. Whats everyones feelings? Especially those who have gone back?

    thanks, Gary

  • Offline in reply to Nicola2209

    Hi Nicola and other forum friends,

    Thank you all for your kind words of welcome back!

    Nicola, so glad the PEG removal was a success and a much more manageable experience than its insertion. I though about you when in hospital as the girl next to me was having a peg fitted. (She had gastric problems, not cancer) She had a few days of pain while it 'settled' down, then she received some training on PEG care and use so that she would be able to go home. She'd been in for 11 days so she couldn't wait!

    Glad your trip to Disneyland was so enjoyable - how canny of you to have to return to visit all those little French boutiques in the future! Hopefully you'll be up to sampling the patisserie and Champagne by then too! X

    Irene, sorry to read about your thrush problems. I hope the new medication gets you back on track soon. X

    Simon, you're right about the therapy value of pets - just feeling that little warm, furry head next to me is a comfort - that is the dog, by the way! X

    Gary, congrats on the 50 mile Spin! I think a that beer was very much deserved! I'm not a massive drinker, but have been known to imbibe a chilled lager or two on warm summer nights, however with my 'newly reduced' alcohol processing organ to consider, I think a wee tipple is a long time off for me! Bet we'll have a glorious summer with perfect BBQ and beverage weather! Never mind - very small price to pay!

    Gill, hope your first full time week goes well. And it was the hospital who offered me the braised liver haha! Don't think my partner would have had the gall! (That's funny too as I had my gall bladder removed at the same time!) ah, you can't keep a good gal down for long!

    Enjoy the sunshine folks, and will keep popping on to see how things are going with everyone.

    Dare I say it, but I'm not a footy or tennis fan, so I hope this weather continues so that I can sit out and listen to the radio! Not likely to be Radio 5 though

    Love and hugs to all, Jo xxx

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