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
  • Hi Nicola,

    Welcome to this friendly and supportive forum. I am sorry to read about your symptoms and feel sorry that the doctors didn't pick up on it earlier. Treatments are improving all the time Nicola and new drugs are being developed all the time.

    Hope when you get your scans done the cancer has not spread. Anytime you feel the need to talk, rant or rage, this is the place to do it and I and other will do all we can to help and support you. Please keep us updated when you can, best wishes, Brian.

  • Hi Woodworm,

    Thank you for replying to my post.  I'm sure I will be on here a lot to share info and vent my anger. I have already noticed that the few people that know about my situation already, haven't reacted in the way I would have liked/expected, so talking to other people that are familiar with the situation will help.

    I will keep everyone posted.

    Nicola xx

  • Hi Everybody 

    I went through the whole experience in January 2014 too. Unfortunately I didn’t find this site until 2015 so I really missed out on your wonderful support. I spent the whole of 2014  having operations, chemo and radiotherapy. I’ve just had my 5 year check with ct scan and I’m doing fine. Slight problem with my coroted artery this year which is something to do with the neck resection and treatment. But it’s fine really, I don’t let these things get me down, I just have to take some aspirin now to keep my blood thin. 

    Would be nice to meet up if you ever get nearer to Kent anybody 

    Best wishes

    Carol

  • Oh dear I remember this happening to me regularly when I was a regular contributor to the site.  I typed up a lengthy reply and somehow managed to lose it before posting!  So here goes again:

    Dear Carol

    Delighted to hear you are at the same stage us 'our gang' and doing well.  We'd be delighted for you to join us when we next meet up, probably in Bristol.  I realise it's quite a trek from Kent, but closer than Liverpool or Edinburgh!  We'd welcome anyone else on this thread - Heddus? Joe? Clara? Pat? Sherry? anybody else I've missed?  

    Between us (Nicola, Gary aka Guzzle, Gary aka Vatch and Simon S) I hope we can remember to post on this thread when we have a date for our next reunion.

    For those playing that dreadful waiting game for test results, I'm sending positive vibes through the ether.  If you get bad news, get straight back on here for some great support.

    Love Irene x

  • Hi Irene

    That would be lovely to meet everybody.

    We can take our caravan for a few days in the Bristol area and also meet our other friends that live near. I’ll keep an eye out for your meeting date.

    keep well

    Love Carol x

  • We’d love to welcome some new members to our gang! There are plenty of places nearby in Bristol for your caravan Carol, we’ve had a good laugh when we’ve all met up and it’s a special friendship to have, as we’ve all been through very similar treatments. It really helps me to speak with and share experiences with people who really understand. 

    We will certainly let you know when it’s arranged.

    Joe - any news yet? Please come back and let us know how you are. 

    Soeak soon,

    Nicola

     

     

  • Hi Nicola 

    I think we were going through this crap about the same time. I was diagnosed in December 2013, so I spent all of 2014 getting through the ops and treatment.

    I’d love to meet you all for a get together 

    love 

    Carol 

  • Hi all

     

    I've got some questions regarding symptoms....I have a fingerprint sized patch on the front right side tip of my tongue, it fluctuates with ulcers and sores and tingles. I've had it for roughly 8 weeks, since I first noticed it. Last week I had some pin spot bleeding on the side and I've had some numbness/tingling intermittent on my lip and face. This area also has a rough feel like a cats tongue.

     

    I've got a 2ww apt at maxillofacial on Thursday, obviously I'm worried. My husband is convinced it's geographical tongue, which I'm hoping for. 

     

    Any shared advice guidance greatly received x

     

     

  • Hi Lenny

    You have done the right thing in getting your symptoms checked by Maxol facial as they are far more qualified than a GP. There are many people who have been in your position on this forum but have been perfectly fine. There are many things that it could be besides cancer so please try not to worry until your appointment. 

    I have been through this so the main thing is that you are being seen early which is never a bad thing. Good luck with your appointment and please get back to me when you have been.

    my very best wishes Carol 

  • Thank you Carol, it's hard not to let the mind go crazy

  • Hi,

    thanks for the lovely messages back in April, I had my operation the first week of my. Final staging was T2N1 which meant there were cells found in the lymph nodes in my neck, none had penetrated vessels or nerves so the consultant was happy they got it all out. 

    I’m now having to go through 6 weeks of radiotherapy. I just started week 4 and it’s hard, really really hard, I’m really struggling with the pain and not really able to eat anything at the moment. My taste has pretty much gone. I was just wondering if anyone who has had radiotherapy on the tongue if their taste returned and how long it takes after the treatment cycle for you to start feeling human again

    ive caught up with all the new post since my first one and I’m so sorry to see so many more having to get the news, if I can help anyone please do reach out

    Joe

  • Hi Lenny

    Just wondered if you’ve  had any news regarding our last chat.

    It would be lovely to hear from you.

    Best wishes

    Carol

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