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

Parents
  • Hi Nicola, 

    I’m not sure if I’m posting on the right place but this was the first post of yours and I spent the last couple hours reading your whole story and found you to be so brave, positive, and just all around amazing.  Your story touches me in my heart.  You have made so many friends from this forum I’ve read a lot of Simon, Annebell, Deb, Meerket, and others and you all became such a source of strength for one another.

    This is my story.  For over a month I’ve had a sore throat sore neck and it feels like something is stuck on the back of my tongue.  I was referred to a ENT who scoped my throat through my nose in his office.  That was a week ago.  The Dr said it “ might be squad cell carcinoma “ and if it is it’s “ at an early stage”, He ordered a cat scan for me which I had yesterday and they gave me the Disc to take to my follow up appointment tomorrow with the Ent.  Oh and he said I needed a biopsy on the base of my tongue where he saw a lesion so that’s scheduled for May 8th.  I have to get an ok from my cardiologist which includes a treadmill and an echo of my heart because I have heart disease ( 4 stents)  first before I can have the endoscopy with biopsy. 

     

    Anyway im pretty nervous and really hate the waiting. I’ve stopped googling all my symptoms because it just made me worry more.  It seems the only relief I get is prayer and reading all the success stories from following your posts.  You see both my brother and my mom had head and neck cancer and they both were diagnosed after it was too late. So I’m really afraid it may be in my genes if that’s even possible. 

    So I see my ENT tomorrow for the results of my neck cat scan. I am hoping it’s all clear.  Also my Dr said if it’s cancer it’s annearly stage.  I was shocked with even the thought it could be cancer so I didn’t ask many questions but I can’t understand how he’d know it was early without the cat scan being done first?  I did ask how big the lesion was on the base of my tongue and he held his fingers up and it looked like maybe a quarter inch to me.  Tomorrow I’ll ask him in cm .

     

    any advice you could give me on questions to ask tomorrow would be greatly appreciated.  I really admire your attitude through your whole journey.  I’m not strong like you but hoping you’ll wear off on me lol.  Your whole group of friends on here seem to be so supportive and amazing.

     

    Sorry for the rambling.

     

    Sherry

Reply
  • Hi Nicola, 

    I’m not sure if I’m posting on the right place but this was the first post of yours and I spent the last couple hours reading your whole story and found you to be so brave, positive, and just all around amazing.  Your story touches me in my heart.  You have made so many friends from this forum I’ve read a lot of Simon, Annebell, Deb, Meerket, and others and you all became such a source of strength for one another.

    This is my story.  For over a month I’ve had a sore throat sore neck and it feels like something is stuck on the back of my tongue.  I was referred to a ENT who scoped my throat through my nose in his office.  That was a week ago.  The Dr said it “ might be squad cell carcinoma “ and if it is it’s “ at an early stage”, He ordered a cat scan for me which I had yesterday and they gave me the Disc to take to my follow up appointment tomorrow with the Ent.  Oh and he said I needed a biopsy on the base of my tongue where he saw a lesion so that’s scheduled for May 8th.  I have to get an ok from my cardiologist which includes a treadmill and an echo of my heart because I have heart disease ( 4 stents)  first before I can have the endoscopy with biopsy. 

     

    Anyway im pretty nervous and really hate the waiting. I’ve stopped googling all my symptoms because it just made me worry more.  It seems the only relief I get is prayer and reading all the success stories from following your posts.  You see both my brother and my mom had head and neck cancer and they both were diagnosed after it was too late. So I’m really afraid it may be in my genes if that’s even possible. 

    So I see my ENT tomorrow for the results of my neck cat scan. I am hoping it’s all clear.  Also my Dr said if it’s cancer it’s annearly stage.  I was shocked with even the thought it could be cancer so I didn’t ask many questions but I can’t understand how he’d know it was early without the cat scan being done first?  I did ask how big the lesion was on the base of my tongue and he held his fingers up and it looked like maybe a quarter inch to me.  Tomorrow I’ll ask him in cm .

     

    any advice you could give me on questions to ask tomorrow would be greatly appreciated.  I really admire your attitude through your whole journey.  I’m not strong like you but hoping you’ll wear off on me lol.  Your whole group of friends on here seem to be so supportive and amazing.

     

    Sorry for the rambling.

     

    Sherry

Children
  • Hi Sherry

    just reading your story on Nics thread and wondered how you are as it appears you haven’t  had any reply’s to your post.

    I’ve had major tongue surgery and the treatments etc but doing well now so if your having problems still (hopfully all is well ) please get back to me as I  will now get a notification if you reply to this post

    my best wishes to you

    Carol x