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

  • Thank you, all of you wonderful people for your kind words and posts. My operation is today, 8 hours of surgery! I'm praying all goes to plan but I don't like the thought of being kept unconscious for so long. They plan to operate at 9am this morning but I won't be brought around until sometime over the weekend    I'm going to miss my daughter incredibly whilst in hospital, I will be there for about two weeks however, it is one big step towards beating this cancer.

    I will update on here as soon as I can after the op and thank you all so much for your support and best wishes. All of you are always in my thoughts each day since joining the site, you really have all been a huge help to me these last few weeks

    Speak soon (or not, as I won't be able to for a while with my new tongue!) I look forward to updating you all soon xx

  • Hi Nicola,

    At this time you will be down in the operating theatre. My thoughts and prays are with you.

    Look forward to hearing from you in the next couple of weeks .

    Bless you Nicola

    best wishes

    Annabel.

  • Hi Nicola,

    You'll get this post when your surgery has been done, but just wanted to say I was thinking about you!

    I hope you're recovery is speedy and as pain free as it can be. I'll not be logging after Tuesday (op day for me) so I'll have to catch up with your progress in a few weeks time. Take care, Meerkat (Jo) x

  • Hi Nicola

    I so hope your surgery went well. Your message brought tears to my eyes and I'm thinking of you.

    Your daughter will be fine - my kids have coped so well. Just concentrate on yourself and on beating this. Stay positive!

    Debbie

  • Hi Colin, Debbie, Meerkat, Andrea, Annabel,

    I'm finally out of hospital after ten days. My operation went well and my recovery has been quick. Apparently I'm "superhuman" accordingly my doctors as I have recovered a bit too quickly!!  Thy can't believe it!

    The operation was 8 and a half hours and as planned, 50% of my tongue was removed and replaced using tissues/muscle and an artery from my left arm and a skin graft from my tummy. They also removed my lymph nodes on one side of my neck and removed two wisdom teeth! I was under anaesthetic at 10am on the Thursday morning then in an induced coma in intensive care until the saturday morning. I was then moved to the ward on the Sunday afternoon,

    My tongue looks very neat. It's still very swollen on the one side, but the swelling has reduced a lot already. It's odd because part of my tongue is white as in the colour of my arm skin but the old part of the tongue is the usual pinky/red colour! The switches are dissolvable and should come out over the next couple of months. I was told to expect to not be able to talk as soon as I was awake but I was chatting away! My speech was fairly clear too so that pleased me, I didn't even need to use the whiteboard I had bought to communicate! My tummy wound has been fine until now - the dressing was removed yesterday before I left the hospital and it's become itchy and I'm aware of it all of the time whereas before I was not. My neck wound has been fine, very neat and tidy but I can not turn my head too much or too quickly and it has been tighter over the last 24 hours, so I'm going to ask the nurse to look at them today when I'm back at the hospital for an appointment to have the stitches removed from my arm. My arm is by far the worst wound, there is a large area on the inside of my wrist which will be scarred and then a long line up towards the inside if my elbow where the artery was. Luckily I'm not vain and I'm not worried about scars! This wound has been painful at times and it's still heavily dressed with a splint so I can't move it or use my left arm at the moment. I think the removal of the tooth wisdom teeth was probably the most painful part though! This caused a lot of swelling and bruising, I look as though I have been beaten up!

    I've never had an operation before so I was very surprised at how incapacitated I was following the operation. I was not allowed out of bed or to sit up at all whilst in intensive care but the day after I got to the ward I was encouraged to move around but I couldn't do much at all. I needed help to sit up, stand, use the loo. My sight was a bit blurred and I couldn't even hold a book or text on my phone. I was very dizzy on my feet for a few days and I didn't expect that at all so that all threw me a little but by 6 or 7 days post op I became very independent. I had a problem with phlegm and saliva for a coupe of days in which I seemed t be producing lots if it but that has settled down now and 6 days following the operation I was allowed to try very small sips of water then on day 7 I was able to try soup. So that's my diet at the moment - soup, ice cream, custard, yoghurt and the nutrition drinks from the hospital. 4 days on and it's already getting tedious!

    Overall, it's been ok. My stay in hospital was as comfortable as it could be and I salute all of the doctors and nurses who have looked after me, they've have done a fantastic job and I couldn't have asked for more. I've been sent home with tonnes of medications and instructions but I have felt totally at ease the whole time as I well well informed about everything.

    It's so nice to be home and not be poked and prodded every couple of hours for blood pressure checks, temperature etc! I've missed my little girl terribly and everything all still seems a bit surreal, I still can't quite believe what I've gone through and that it happened to me. I now have to wait a week to find out if I will be needing radiotherapy but I'm optimistic that I won't. My surgeon is confident that all of the cancer was removed from my tongue during the operation but they can never be too sure about lymph nodes. It's been an experience but as always, you people were on my ind the whole time. I'm anticipated a long recovery time at home (approx 4 months) which I will certainly make the most of and do as I'm told and rest.

    Speak soon,

    Nicola

  • Hi Nicola,

    Welcome back!

    Nicola, I am so pleased at how well things seem to have gone for you - are you super-human?

    You have been through so much in such a short period of time and it is really good that you are able to speak. Well done you!

    I am convinced that your positive attitude has played a big part in helping things to go so well.

    Your post has made my day!

    Regards

    Simon.

  • Hi Nicola,

    I am thrilled that your operation went well and that you are doing so well, and back home so soon with your daughter too - what a bonus!  

    Thats it now.  The operation is over and all that's left is to recover - and nicer food as soon as you can eat it.

    Please keep updating, especially regarding radio therapy.

    Look after yourself.

    Garf. x

  • Oh nicola I am so pleased that the op went as to plan and that you are now out the other side.

    Hopefully, each day you will see a little improvement especially now you are home again.

    Make sure you rest as I do think this helps in the long run.

    And keep positive!

    Debbie

  • Nicola,

    I have been wondering how you are doing when I found your post. It is wonderful that you have and are doing so well. I am delighted to hear you are "superhuman", and home already.

    Well done for facing what you had to go through, and I am sure your positive attitude helped overall.

    Look forward to chatting over the next few weeks of your recovery.

    best wishes

    Annabel.

  • Hi everyone,

    Thanks for your lovely messages. It's really nice to know that you have all been thinking of me. I have been at home for three days now and I'm 13 days post op but I'm already very independent, I only need help with a few things but I am making sure I get plenty of rest and that I take all of my medication. I'm wondering how Meerkat is doing, as I believe her operation was last week, so I'm eagerly eating to hear from her.

    I'll update again next week once I have the Pathology results. I'm still being optimistic that radiotherapy won't be required but either way, positivity is helping me along.

    Speak soon,

    Nicola