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

Parents
  • hello nicola, first of all the most important thing is staying positive,yes there are horror stories out there but the number of people ive meet over the past 6 years with the same condition have come through it to lead a near normal life ,obviously i understand your concerns especially as you have a young daughter ,which is why i suggest not to hide your symtoms,the more people that now will be able to help you when you need it, true its going to be a rough ride the next couple of years but you can pull through this, if theres any info on what the proceedure is for the op or the possible follow up treatments after please let me know , i was stage 4 tongue and lymph in neck ,im 6 years post op and although at times its been difficult im here and doing my upmost to lead a normal life again ,you can too,please let us all know how things go all the very best x

  • Dear All

    Finding it hard to have to be posting here at all but my husband is waiting for treatment for tongue cancer, surgery at least (including some lymph node removal) and then maybe radiotherapy if he needs it. I'm focusing very much on practicalities at the moment... he's a teacher so speech is important to him, how long in your experience before he might be able to get back in the classroom? Should he be thinking after Christmas or longer (assuming things go well). What impact would radiotherapy have on his speech recovery?

    Thanks :)

  • Hi 

    i am 10 month post radiotherapy for tonsil cancer understand where you are coming from but I had 2 chemo and 35 radiotherapy sessions never had a problem speaking but the general,tiredness etc may and probably will get to him just an idea whet  younhave  posted this is an old thread you might be better either starting your own or looking at say Radiotherapy For Throat Cancee in section living with cancer has that’s a current thread. 

    I have a blog www.radioactiveraz.wordpress.com where’s I do a blow by blow account if my treatment. Just remember we are all different ,one if the worse things he maybface is lack of saliva which I still have and although speaking isn’t a problem I find talking for more than 10 min so or in a group of people dries me out and makes me tired. But we all are act differently some return straight to work a few work all way through it all depends on what treatment and how his eating is effected

    hope this helps to hard to be precise   plan   For the long haul and hope for the short route. But I know people who have also returned too early and are  now taking longer to recover it really is a guessing game. 

    Hazel 

Reply
  • Hi 

    i am 10 month post radiotherapy for tonsil cancer understand where you are coming from but I had 2 chemo and 35 radiotherapy sessions never had a problem speaking but the general,tiredness etc may and probably will get to him just an idea whet  younhave  posted this is an old thread you might be better either starting your own or looking at say Radiotherapy For Throat Cancee in section living with cancer has that’s a current thread. 

    I have a blog www.radioactiveraz.wordpress.com where’s I do a blow by blow account if my treatment. Just remember we are all different ,one if the worse things he maybface is lack of saliva which I still have and although speaking isn’t a problem I find talking for more than 10 min so or in a group of people dries me out and makes me tired. But we all are act differently some return straight to work a few work all way through it all depends on what treatment and how his eating is effected

    hope this helps to hard to be precise   plan   For the long haul and hope for the short route. But I know people who have also returned too early and are  now taking longer to recover it really is a guessing game. 

    Hazel 

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