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

  • Simon, have great holiday. All, thought Reiki was excellent. Anyone heard from Vatch?

  • i'm here

    just had a rough two weeks post treatment in weeks 7 & 8. Now in week 9 and starting to feel a lot better

    i will fill you all in on my post

    Glad you are all doing well though ... im just about on Rice Crispies in the morning and a pot noodle in the evening ... nothing too hot though

  • Good to hear from you namesake - glad to know you are on the mend and eating. Just been in Liverpool Zip Wire (google it!). That will be you soon!

  • Hi all,

    Just a quick hello and to tell you all that it's exactly one year ago today that I had my tongue surgery - September 12th - and I have uploaded a photo to my profile on here of my reconstructed tongue as it looks today, if anyone is curious! I've also added a photo of the scar on my arm from the graft - where the tongue graft was taken from.  The skin graft on my tummy (which repaired my arm) and my neck dissection wound are both looking pretty good these days although still noticeable.

    A year ago I was "sleeping" in Intensive Care for a few days until they brought me around and little did I know back then all of what was ahead of me!  I've learnt to eat and speak again, felt more unwell than I've ever felt before but most importantly I've learnt the true value of life and happiness. What a year it has been!  A huge thank you to all of my online friends who have helped me and encouraged me through it all, I will never forget you all.

    Hope you are all well & speak soon,

    Nicola

  • Hi Nicola,

    Well done for all you've achieved over the past year and Happy Birthday to your new tongue!

    The last 12 months were a huge challenge for you and I'm so pleased that things are going well. At least I only had to focus on myself and I had the support of my wife - you had to cope with raising a young daughter at an important stage of her life.

    Keep us posted on how things are going - you are an excellent motivator for others.

    Simon XX

  • Nic, still a beautiful young woman with lots of life ahead of you. Congrats, Gary x.

    Simon enjoy your jollys.

  • Hi Nicola,

    Wow! It certainly has been a year for you! Congratulations on all you've achieved so far!

    You and your daughter look beautiful in your photo.

    I hope you continue to get stronger, less fatigued and heavier!   (though I know how hard the latter is to achieve!)

    How are the going back to work plans? Remember to take it slowly. I made the decision to reduce my working week to 4 days and I'm enjoying the longer weekends with having Fridays off (though so far they've involved medical appointments!)

    My 'anniversary' is next Wednesday, but I don't think I'll upload my stoma photo - certainly not as photogenic as you!

    Keep posting with how you're getting on.

    Hugs to you, Jo xx

  • Hi Nicola

    Congratulations on your year milestone - you look amazing!

    I thought my "journey" was tough but yours was far tougher. As you say, it certainly makes you value life and makes you stronger.

    Debbie

  • on Vatchs thread Nic suggested anyone who fancies ot getting together. I was trying to see access in Yorkshire a few weeks ago but unfortunately he couldn't make it due to treatment. Where would be the most Central place?

  • Hi Nicola

    Huge congratulations on this milestone - what a long way you have come!  It was lovely to put a face to your name and a very happy one at that - you and your daughter look beautiful.  As Simon says, you really are a great motivator for others joining this thread, so please do keep posting to let us all know how you are getting on.

    Well I'm buzzing a bit today after the exciting achievements of my daughter, niece and 9 of their friends yesterday.  They climbed Ben Nevis to raise money for the Ninewells Cancer Campaign, a local charity which initially formed in 1991 to raise money for a CAT scanner at Ninewells then went on to help establish the University of Dundee Biomedical Research Centre.  It also helped fund the Princess Alexandra radiotherapy unit where I was treated and continues to raise money for cancer research and treatment at Ninewells Hospital and Medical School.  After my illness and a couple of stays on Ward 32 (also a beneficiary of this campaign) Amy was determined to try and 'give something back' - in her words "....most of the girls that are doing this challenge with me have experienced this on some level and so I was keen to raise money for a more local fund, for the very people that look after our own loved ones, our mums, aunty, granny, grandad, brothers¿.. for the hospital we'll be visiting and that we hope can give them the very best treatment and support".  Between just four of them they have raised over £1,300, with the totals from the other 7 girls still to be added!  So my wee heart was just bursting with pride last night, as well as feeling enormous relief that they all completed it safely. It was a really hard slog for most of them although 3 superfit lasses zipped up and down in 5 hours most of the rest of them took over 10 followed by a long drive back from Fort William to Perth and Dundee.  Visibility at the summit was poor, but the weather was kind to them so at least they managed to enjoy some spectacular views along the way.  So you can probably tell that I'm one very proud mummy indeed!

    I am doing fine, with my 8 month check-up due next week.  My other good news is that my Dad is making progress, although very slow.  Thankfully he has recovered his speech which was so frustrating for him.

    Great to hear you are beginning to feel better Vatch and hope you have a lovely, well-deserved holiday Simon.

    Keep well everyone!

    Love Irene x