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

  • I have a question friends.  I know there are different schools of thought between different hospitals but I've been re-reading some threads today and wondering about the fact that I haven't had any follow-up scans during the time since my treatment ended in January.  I did ask about this and was told it was because they are able to see the site of my primary cancer (the one I had no idea I had) from visual exams of my mouth/throat (i.e. when they put the spatula on base of tongue and make me say AAAAH to the point of gagging).  I've lost count of the number of times I've tried to look down my throat in the mirror and see nothing.  I've always placed my trust in the team treating me and been happy to be sent home after monthly checkups with 'all well, see you in a month' but in light of others' follow-up treatment am now wondering if I should have been given a scan to confirm all is well?  I'm sure I must have a case of the anniversary jitters because it's just been in the past few weeks I'm starting to worry again about a recurrence although I have no symptoms - being a bit paranoid maybe?

  • Hi Rozdog, Good to hear from you, a few of us have had problems logging into the site since its new look but I've finally managed to log in tonight! I wish you all the luck in the world for tomorrow, you must be relieved that it will finally be done but also nervous. I hope your recovery is speedy, mine was and they put that down to my youngish age. I had speech therapy to help me swallow water and then food and it also helped me learn how to pronounce sounds and words again. You'll be fine, you really will. Get plenty of rest afterwards, it's surprising how much it will take it out of your whole body. I will be thinking of you and just think, this time tomorrow that bloomin lump on your tongue will be gone! Stay brave, Nicola xx
  • Hi Irene, I don't think you're being paranoid. I had a scan about 10 weeks post treatment and I was told they weren't scanning me to check for cancer as they were positive there was none left but more for a "baseline" so that if I ever had symptoms in the future and needed a scan, they would have something to compare it to. Which makes sense. However, it certainly put my mind at rest by having another scan. Could you request one? Although my consultant tells me all of the time that an MRI scan wouldn't pick cancer up in its earliest stages, but it would most likely be picked up earliest by me reporting symptoms or by them during my check ups. It's such a worrying time, I would definitely suggest voicing your concerns with your nurse/consultant. Nicola xx
  • Hi Irene and Nicola,

    Thank-you for your words of support. 

    I have my pre op drinks to take at midnight and 5am!:D These are meant to help quite a lot in recovery.

    I have an early start to have the dye injected and then just a few hours wait until the surgery.

    Its nice to hear from you knowing you have been there. I suspect the fear of it is worse than the actual thing.

    I will update you all once I am out of hospital which should be only a few days later.

    Thank you so much.

  • Hi Rozdog,

    Just catching up on this thread and see you have surgery tomorrow.

    Well wishing you all the best for the op and a speedy recovery. I am sure your mouth is going to feel strange for a while but eventually you will get used to it,especially once it has finished healing.

    So sending loads of good wishes 

    Hugs 

    Annabel. xx

  • Hi Irene,

    I can understand your worry and concern that they are only using their eyes to check for signs of returning cancer. I think we all get a certain reassurance with these scans/xrays etc.However like you I too only have a checkup where they feel and look albeit in a different place.!!! Also There are always slight risks in having scans /xrays  so if it isn't necessary then it's understandable they don't choose to risk it further. However if you are really worried why don't you talk to them about it next time you go? I am sure the will be able to settle your mind and if you are really desperate see if they will do one for you. 

    Goo d luck with it Irene and you are definately not being paranoid. 

    Hugs 

    Annabel xx. 

  • Friends

    Many of you will be aware that Access (branchial cyst thread) recently lost his battle - such a loss, a lovely man who supported so many people on this wonderful forum.  I've just received a PM via FB from Gary (Guzzle) who is unable to log in here at the moment, asking me to post details of Access's funeral arrangements as follows: 1015 on 19/11/14 at Wear Valley Crematorium, Coundon, Bishop Auckland DL14 8NR.  

    Sad times.  Love to all, Irene x

  • Hi All, 
     
    Sorry to post after seeing the bad news above. It brings home to me how horrible this illness can be. 
     
    I have just returned from hospital after having my surgery on my tongue. I was in surgery for about 5 hours (I think), and took ages to wake up after. The surgery was a success.  
     
    At the moment my tongue is the size of a golf ball, But I am in hardly any pain, the biopsy was far worse.;) It also has a thick yellow coating on it which scrapes off, did anyone else get this after tongue surgery? 
     
    I am drinking special food drinks at the moment, but can swallow fine. They also said my speech is good and once the tongue has returned to a normal size I should be able to speak ok. 
     
    Eating is a lot harder than i thought, I cannot eat anything solid or non liquid, I can manage yoghurt and custard. If I put anything solid in my mouth it just falls to the bottom and I have no control over it, apart from digging out with my finger. But its slowly getting better each day. 
     
    My stay in hospital was fine, but I much prefer to be at home. I am up and about I go back in next week to find out my neck biopsy result. Hopefully these will be fine. I consider all this a small price to pay for life. 
     
    Thank-you to you all. 

  • Hi Roz_dog!

    First of all sorry if you get two similar replies to your post.  Am a bit of an old-timer and thought I had written a lengthy reply to you, but now looks like I lost it in the ether!

    I am delighted to get some good news from you after all the recent bad stuff.  Great to hear your surgery was a success and although you are having a few eating issues at the moment, it is good to know that your speech is unlikely to be affected.  

    This forum is great for sharing experiences and seeking advice.  I can't help with the coating on your tongue but it has certainly had a hell of a bashing so you are bound to suffer some side effects, hopefully short-lived! 

    Hang on in there pal, before you know it you will be living life to the max again.  As you say, it's a small price to pay.  I keep reminding myself of that when I moan about food issues now and again (well probably more now than again if I'm honest!).  You are doing just great and this will soon all be behind you.  

    Love Irene x

     

  • Hi 

    Firstly, Roz Dog the white coating is probably thrush. If you tell the doctors, they will give you something for it as they did me. It soon went. Hope you soon start to feel better.

     

    Irene - it is so sad about Access, isn't it? He'd want us all to remain positive though wouldn't he? 

     

    Debbie

    x