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

  • Hello again Simon, Guzzle kicked off the idea of trying to arrange a get-together for 'the cancer gang'. Latest proposal is probably in London in April (excl 18/19).  What do you think?  If you'd be up for it, are there any other dates in April you can't do?  Are you on Facebook?  If so feel free to track me down and send a friend request.  I'm Irene Johnston (nee Murray).  Current page photos are seashells and me on a wall by a beach (Faro, Portugal).  Would be lovely if we can pull this one off.  Nicola, Gary Guzzle, Garry Vatch and I are all keen. Everybody else on this thread more than welcome to join us.  Watch this space....

    Since first posting this it looks like we are down to one weekend in April namely 25/26.  I think this is going to be difficult!

     

     

  • Hi Irene,

    Good to hear from you and a get-together in April in London is an excellent idea - I've nothing special planned in April and hopefully it will have warmed up a bit by then.

    If we make it in a restaurant it would be interesting to see how they cope with our varied dietary needs! An Indian meal is definitely out of the question for me (and most others, I suspect).

    I shall seek you out on Facebook - you'll get a friend request in a different name (I use my Dancing Bear alias on public forums - those that don't know the link between Simon Smith and his Amazing Dancing Bear weren't alive in the 60's). 

    Take care

    Simon XX

     

     

     

     

  • Simon good to hear from you mate I'm on Irenes friends regards Gary
  • Oh yeah, the Alan Price Set!  Just replied to your friend request.  

  • So exciting our gang are actually going to meet!  I've booked my flight down arriving London City Sat 25 April at 9 am.  Return TBA! Nicola, Simon and both Garies Vatch and Guzzle are joining us.  Anybody else free that day? Jo, Annabel, Debbie, Chris, Rozdog and absolutely anybody/everybody who has connected with us on this wonderful forum!  So excited! 

  • looking forward to it too... all welcom come on down ... what does anyonewant to do during the day?

  • Annabel, Debbie and Jo - would be FANTASTIC if you could make it to London on Sat 25th April to hook up with us (Guzzle, Vatch, Simon, Nicola and me)!  (A) Nicola and I are outnumbered by blokes at the mo (B) you were three of the first regular contributors to Nicola's thread (C) it would just be lovely to meet you, as you gave so much great support when it was really needed xxx  Colin and Garf, the same applies to you two, with the exception of (A)!  Everyone else on the thread - sorry if I haven't mentioned you by name (oh yeah Rozdog and Chris you are newbies but would love to see you too!).  So the more the merrier, would be just great if more of you can join us!

     

  • hi nicola i have just been pointed to your thread by others on here and i have to say i hope you have had your scans and results by now and things are looking clearer for you... i would also like to let you know that you are not alone i am a 34year old firefighter living a healthy lifestyle and i got the news confirmed last friday that i have the same kind of issue  as yourself. i had an ulcer on my tongue that i just couldn't shift, i even nearly walked out of the doctors as like yourself just didnt feel that it could happen to me with everything in my favour i thought i was wasting the gp's time. pleased i didnt now he was great and actually reffered me straight away  so sorry you got messed around that should never have happened . they told me virtually straight away  without wating for the biopsy let alone the biopsy results which i wasnt expecting and i had my scans on friday with an mdt meeting coming tomorrow to find out the treatment plan. so please let me know how your geting on we are now doing this together... 

    all my best wishes to you nicola i know what your going through so stay strong Ryan xx 

  • Hi all,

     Am just back from States.  Afraid I can't make April; perhaps another time.

    I also have the problem that I am unable to eat at all, so a meal would be awkward.

    I still find this new format not to my liking. I think it was not designed by DP professionals

    in concert with the users. I find it less than intuitive. Perhaps senility is my problem?

    Regards

    Colin

  • Hello, this is my first posting on this site. I have been reading every post so far and bought the book 'In Your Face' which was mentioned and I must say it was an inspirational book and gave me an insight into what was in front of me.

    I was just discharged from hospital on Friday after nearly three weeks. I had a large tumour on my tongue so I had 9/10th of my tongue removed and also my lymph nodes. I had a reconstruction usng an artery from my arm and then a skin graft. I then had a skin graft from my tummy to my arm. Everyone is saying how well I have done in this short period as people can understand me whenI speak through my trachy. I go back next Monday 23rd for my DMT meeting to see if I will need Chemo/Radiotherapy. I think I am more worried about that than I was about the op.

    My problem at the moment is: I am on a Texture C diet, moving up to a Texture D but I find I always feel my mouth is loaded with creamy gunge. Is there anything I can use to keep my mouth fresh, I do have an antiseptic mouth wash I'm using. I'm wondering if it is just this alien being that is my tongue now.

    Any advice would be very much appreciated as you have all been an inspiration to me prior to my op and since my op. At least when my Consultat was explaining what had to be done I understood it more after reading all the postings on this site.

    I'm just so grateful to have my life back and want to do everything in my power to make it more comfortable. Many thanks for listening to me. Mary (Scotland)