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
  • hello there, im gazz and im nearly 2 years post op now after having reconstructive surgery for stage 5 of tongue cancer,i was told that it was near impossible to know what stage the cancer was until they "went in  " as it was put ,the original plan was to take a graft from the inside of my wrist to rebuild my tongue but ended up with an 18 inch scar the top of my right leg ! the success rate of this type of cancer is fasr better nowdays than it was several years ago , although my taste has not returned (down to the radiotherapy) and being made deaf in the right ear (the radiotherapy again) i am leading a near normal life ,its very important to keep positive and i found telling my friends a massive help , there are a few forums aand youtube users who hqve gone though the same and its welcoming to hear how well they have coped.squamous cell carcinoma is the medical name for tongue cancer as im sure has already been mentioned to you ,if you need any advice on what the normal plan of action is after your mri/pet scan feel free to contact me ,good luck x 

Reply
  • hello there, im gazz and im nearly 2 years post op now after having reconstructive surgery for stage 5 of tongue cancer,i was told that it was near impossible to know what stage the cancer was until they "went in  " as it was put ,the original plan was to take a graft from the inside of my wrist to rebuild my tongue but ended up with an 18 inch scar the top of my right leg ! the success rate of this type of cancer is fasr better nowdays than it was several years ago , although my taste has not returned (down to the radiotherapy) and being made deaf in the right ear (the radiotherapy again) i am leading a near normal life ,its very important to keep positive and i found telling my friends a massive help , there are a few forums aand youtube users who hqve gone though the same and its welcoming to hear how well they have coped.squamous cell carcinoma is the medical name for tongue cancer as im sure has already been mentioned to you ,if you need any advice on what the normal plan of action is after your mri/pet scan feel free to contact me ,good luck x 

Children
  • Dear Irene and Gazz,

    Many thanks for your informative comments to my posts. I am now 3 weeks post op and the task is now finding things I can eat. I agree with you Irene, I think the gunge is because I am on two bottles of Ensure a day and I also drink milk. Maybe wrong choice. I came out of hospital with a big supply of Ensure and then there was a knock at the door today and a big box of it was delivered. I made the mistake tonight of having some chicken soup (Heinz). The soup went down well but left all the little bits of chicken in my mouth. Husband being despatched tomorrow to pick up a strainer for me. Does anyone have the names of any books I could buy regarding blending nutritious foods as I have got a food processor/blender. I was looking on Amazon but was wondering if anyone could recommend any they have used.

    With having had 9/10ths of my tongue removed and my lymph nodes and a reconstruction done, I can't feel anything on the reconstruction. The first soup I had in hospital was, I thought, cool as I had added a cup of cold milk to it. Not so, didn't realise until my Consultant came round the next morning that I had a big blister on my reconstruction and he was not well pleased||| Much more careful now. I think I have accepted that I will never eat the same way again but I'm determined to attack this new way of eating and get some variety into my diet.

    I've got this cockeyed idea that if I look quite fit when I go to my MDT meeting on Monday, everything will be ok. Who am I kidding???? I've got a 10" wound up my arm where they pinched an artery and both that and my two skin grafts are healing nicely. At least the metal necklace has gone now.

    It is such an inspiration to read of people on this site who have been worse than me and it has helped me so much. Thankyou to you all.

    Mary (Scotland)