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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 Colinb
    Ah Colin, I see now. So true. It's been trial and error for me, though I did take part in an online interrview with the forum designers last week and they gave me some helpful hints ( like how to get to latest posts) But I agree, this new style format is less easy to navigate! Dave, am going to try your hint for creating paragraphs - let's see what happens when I hit post! Max, have gone back to anonymity! Haha! x
  • Offline in reply to Meerkat@65

     

    Aaaaahhhh - too much fan mail to cope with I suspect haha!  Speak soon x

  • Offline in reply to max56
    God the cancer forum is turning in to a computer class lol only joking folks How are you all ... good, getting better or not too bad i hope I am on the up, well been doing better than i have and i can see and feel improvement, but i understand there is a way to go yet. Loving my new svelt 3 stone less figure but losing that weight also took all my muscle with it too and i find that i can't walk around town for more than an hours before my back starts tensing up and cramping ... that what 4 months practically laying on you back and doing nothing ... but trying to get well ... does for you is suppose like the thread in here i still get oral thrush even though i use a billion solutions daily ... that saliva stuff is magical ... what. Nicola hows work ... i found it very tiring ... mentally it knackered me out but after finishing treatment on 15th Aug i have now just done my first full week at work ... 3 months on ... and it kills me by the time i get to friday ... but i don't have the luxury of not doing it .. got to earn the pennies so how are we all i have not heard form Guzzle and Simon recently so hope all is well there I am slowly getting used to this site, but only because i don't want to lose contact with the great friends i have now made on here chin chin all
  • Offline in reply to Vatch
    God this paragraph thing is a right pain
  • in reply to Nicola2209

    Hi Nicola, 

    I hope you are well. I have not had any results back yet, but my tongue has gone down to half the size it was in hospital, and I can eat solid foods using the right side of my mouth. I have my results soon so will keep this updated.

    I myself should be going back to work soon and I have decided not to talk about it with people unless they ask. I think you had a lot more to go through and it must get annoying keep explaining it to people. I used to think people who have had cancer would look a certain way etc but I have seen many others when I go to hospital and they all look fine like they have never been ill. I must admit I found it hard before I got it to understand why someone could be ill when they look fine on the outside. But my whole way of thinking has changed since then and I understand it alot better.

     

    Will keep in touch thank you for replying.

     

     

  • Offline in reply to Space_1999
    Hi Roz Dog i have found that being ill and looking ill are two different things .... i am not just over 3 month post chemo and tomotherapy and although i have lost a lot of weight, people actually say to me ..."God you look well" at a stage in my life when i most probably the frailest (if that's a word) i have every been. I am sure all of you that are on the mend go through you own routines in the morning and at night, especially us who have had oral based cancers ... the constant cleaning with multiple fluids .... its something i thinks is now with me for some time to come. I would say it takes me an extra 45 mins to get out in the morning as i still have to nebulise morning and evening, then there is the moisturiser and all that guff on top So i think outwardly we may all look good or better, but it takes a bit of work to get there.... however we are al very tired and that's something people dont see ...only my wife sees how tired i get from work and even just walking is a limited luxury So I have got to the stage that i don't need to tell people how hard this is, let them stay blissfuly ignorant to the fact .. unless they ask, but unless you have been through what we have been through, or supported someone, people dont understand the gravity of it... but i thik that's ok We all stilll keep going and that's the main thing ... i think
  • in reply to Vatch

    Yeah Vatch i woould agree, but I could not understand it fully as I have had a pretty easy ride with it.

     

  • in reply to Space_1999

    Hi Guys,

    Bit of bad news but not major, My neck biopsy results came back and there were some cancer cells within the neck nodes.

    They are going to remove all of my nodes from the front of my neck to make sure its all gone. Providing they are free that should be it, if they find any then it will be radio but I will cross that bridge if I come to it.

    It would of been done anyway had I been anywhere else in most other hospitals. 

    Everyone have a nice weekend.

     

  • Offline in reply to Space_1999

    Hiya Roz_dog

    Really sorry to hear they found some bad cells in your neck nodes - a bit more worry I know, but as you rightly say this is 'not major'. Hopefully the neck dissection will do the trick, if not, then you join the ranks of many folk on this forum who have had RT.  It ain't very nice but you will get through it and it will be well worth having it done.  One day at a time.... You have exactly the right attitude and will soon be looking back on all this as a bad memory.  Best wishes, Irene x

  • Offline in reply to Space_1999
    Roz Sorry to hear that, It's not something i had to have ... i just had the chemo and tomotherapy ... and im waiting for the results of my first scan post treatment. Wishing you all the the best ...when do you go in? Vatch

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