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Tongue Cancer - Diagnosed two days ago

Nicola2209
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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

  • Offline in reply to Vatch

    I'd have loved to have met you all but I'm in Canterbury which is a long way from Liverpool. Glad you had fun x

  • Offline in reply to Nicola2209

    Who's who in the photo?? I love to,put faces to names! X

  • Offline in reply to kirkc99

    Well we all came from all over Perth in Scotland, Bristol Suffolk and London

  • Offline

    Hi Nicola,

    It always seems worse at first, and I like you still refuse to accept it even though I was diagnosed around eighteen months ago. When the Consultants and Doctors talk to me, it feels like they are talking about someone else, I like you, just cannot accept it.

    It,s funny, but every time I kook in the mirrow it seems I am looking at another person, it is certainly a way to loose weight and have a grey wrinkled look, I know it's me, so you have I have no other choice other than trying to accept it.

    My very best wishes, and may some beautiful some days follow you.

    Davidxx

     

     

     

  • Offline in reply to Davidw
    Hi David. Thanks for your message. I think you may have misunderstood me. I certainly haven't refused to accept having had cancer or the side effects I'm left with. I don't feel there is a choice to accept it but I meant that it sometimes feels like it never happened to me....as in my life is carrying on as though I never went through such a huge thing which is great. Hopefully that will give hope to the ones who are going through it now. Glad to hear yours is behind you now as well and hopefully things are better for you now too. Nicola.
  • Offline in reply to kirkc99

    From left to right...

    Jayne, Garry, Nicola (myself!) Gary's wife, Irene's husband, Irene, Simon, another Gary.

     

    Our next meet up is planned to be in Edinburgh! 

  • Offline in reply to Nicola2209

    Thanks for posting Nicola.  It was ABFAB catching up with the gang this weekend - and all the more special for this 'child of the sixties' reliving the wonderful Merseyside music of the era.  To any 'newbies' visiting this thread with a recent diagnosis -  I hope that the very special friendship (through this wonderful forum) of this bunch of 'contemporaries' gives you hope that there is lots of life after head & neck cancer.

    We supported each other so well during and immediately after diagnosis and treatment and I hope many of you will continue to do so.

    Lots of love to all, Irene  x

  • Offline in reply to isjheatherlea11

    Hi all - great picture! I'm gutted I missed that as I'm from Liverpool and live in Cheshire (I'm still under Aintree Hospital in Liverpool and go there for my scans and check ups).

    I spent a lot of time on the 'branchial cyst' thread years back (started by the legend 'Access') when I was going through my journey. I was originally diagnosed with mucoepidermoid carcinoma with unknown primary in March 2012 and had a neck dissection, tonsilectomy and a piece of my tongue removed.

    The years have gone by and I had an MRI scan a few weeks ago which came back clear, and means that I am now offically cured, and will be signed off by my doctor (my primary didn't turn up and it now looks as though it never will). No more scans or visits to the hospital  and any further cancer would be a new one. I must admit I feel a bit of 'survivor's guilt' when I read about the tough times people have here with the radiation. But then getting cancer out of the blue at 33 years old and having major surgery isn't exactly a walk in the park! I do consider myself lucky though, and being able to see my son and daughter who are now 6 and 8 thriving in their young lives and in school is the greatest pleasure of all, you do wonder when you get hit with the diagnosis. They were very little at the time.

    Everyone on here was brilliant when I was going through my own journey, and I hope you are all winning. you look like a healthy, thriving bunch on the picture!! :-)

    Cheers

    Leo

  • Offline in reply to leos23

    Hi Leo, lovely to hear from you and even better - to know that you have reached that magic 5 year point where you are officially cured - what a great feeling that must be!  However what a bummer that we didn't make contact sooner so that you could have joined our Liverpool get-together.  We plan to do it again in Edinburgh in 2019 so please do watch this space and join us if you can.  Cheers, Irene x

  • Offline in reply to leos23
    Hi Leo, Good to hear from you, I love hearing from other cancer survivors who have got the all clear. It really gives me hope! My daughter was very small at the time too and like you, nothing matters more to me than being here for her, no matter what is going on in life. The survivors guilt as you put it is only natural I think, but when we feel guilty, we need to remember the tough times we faced at the time. Keep well, this forum has been brilliant for me too. Nicola

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