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

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  • Just an update on my situation - I met my doctor yesterday and also my cancer nurse and I now feel confident to leave my life in their hands as both were very nice and answered all of my questions with great detail.

    My MRI and CT scans are tomorrow and I will receive my results next week on Tuesday. I can't bare the wait but I have no choice.  I am absolutely PRAYING that the scans don't pick up anything nasty other than what we already know.

    My doctor told me that my tumour is at the back of my tongue, on the side, (I can't see it) and I will have surgery to remove it and hopefully less than half of my tongue will be removed. They won't know until the time of the operation if they will need to reconstruct my tongue with a skin graft from my arm.  They will also do a double neck dissection to remove all lymph nodes to reduce that chance of cancer returning however, the cancer may well have spread to my lymph nodes already, the scans will tell me this.  All of this will result in a 4 day stay in hospital. Radiation is likely but not certain yet but my doctor anticipates it will take a month for me to learn to swallow, eat and speak following the operation but possibly longer if reconstruction is involved.

    Whilst at the hospital yesterday I mentioned again my sore throat and my ear and neck pain. I was assured that the ear and neck pain are "referred pain" as all are connected but they looked down my throat with a camera.  This procedure was just awful! I'm no wimp and am fully aware that I have a lot of discomfort and pain to face over the coming weeks and months but having the camera up my nose was very uncomfortable! I'm glad it is now done and the doctor said she couldn't see anything that shouldn't be there but she didn't sound confident and wouldn't look me in the eye when saying it so for some reason, my mind has still not been put at rest about my throat.

    My main doctor always sounds so positive and upbeat which is reassuring however, when I had my first appointment at the ENT clinic about the lump on my tongue a few weeks ago, he was very confident it was just tongue trauma. He mentioned this yesterday and admitted he got it wrong but when he talked about treatment I find it hard to believe in his confidence and positivity.  What if he is wrong again? The other doctor who did the camera procedure yesterday always sounds less confident so it's hard to read them.

    However, my doctor has said I am "special" to them already as they really have no idea why I have this cancer. They say I'm too young, especially as I have never smoked and rarely drink. They don't even believe it is associated to HPV due to the location of the lump but I will be tested for this anyway. So they are a little baffled!

    So that's how it is at the moment.  The waiting is awful and I'm not sure how to deal with the "what ifs" going around in my mind. I'm expecting the cancer to have spread to my lymph nodes but if it's anymore than that I know that I will have great difficulty trying to stay positive. I have a two year old daughter who is at the front of my mind throughout this and I will do whatever it takes to stay on earth with her. 

    I hope my information will be of use to others in similar situations and I will keep updating as I know more.

    Speak soon everyone,

    Nicola

  • Hi Nicola -

    I am new to CancerChat and I read this post about your update.  I am sorry to hear that you "never smoked and rarely drink" yet you still got this.  That saddens me, but I am appreciative and impressed with your optimism.

  • Hi Jillian,

    Thank you for your post. I'm guessing that you are new to this chat forum due to having some unfortunate experience with cancer yourself. I hope you have found it a good pace to let off steam or find some support. It's certainly been a great help to me.

    Take care,

    Nicola

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