Cancer Research UK main site

Tongue Cancer - Diagnosed two days ago

Nicola2209
Offline

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 Mary62

    Thanks so much Mary, you take care x

  • Offline in reply to JoeMac

    Hi Joe

    Just checking in to see how you're doing? Was thinking about you as your first treatment ended just a few weeks ahead of mine and your updates encouraged me!

  • Offline in reply to SW80

    Just popping back in to update anyone who may be reading this thread. I've just seen the doctor following my one year post treatment ending MRI - all is clear! So relieved, and also pleased that with the passing of time my risk of recurrence is reducing (my doctor told me the risk is highest in the first year, with about 50% of recurrences of my type of cancer happening within that year). I will continue going to the doctor for 6 weekly physical check ups.

     

    In terms of the impact of the treatment on my life, things are about 95% normal. I can eat and drink whatever I like, although I need to be a bit more thoughtful with things like salad leaves that don't mush up. My tongue gets a bit dirty due to the reduced mobility. My salivary function seems pretty normal, so much so that I sometimes spit a bit too much when talking - I think because saliva collects in the gully where the flap has no sensation. I have to remind myself to conciously swallow. I still have some pain in my jaw bone caused by the radiotherapy - a bone marrow edema - but that is very slowly reducing. Generally my health is great - I'm doing loads of exercise and feel good.

  • Offline in reply to SW80

    This is fantastic to read! Many congratulations

  • Offline in reply to Catherine32

    Catherine

    Thank you baby steps got me there 

    Hazel x

     

  • Offline in reply to RadioactiveRaz

    I am really not sure how to post to this particular discussion. 
     

    I am a 56 year old lady who is currently undergoing investigations for tongue cancer. I thought I had a a small lump where my tonsil used to be (I had my tonsils removed over ten years ago) and I had the occasional difficulty in swallowing my dinner, but thought nothing of it.

    To cut a long story short, it turns out the lump is on my tongue, not in my throat. I have had my MRI scan this week, PET Scan tomorrow morning, biopsy under general anaesthetic  on Wednesday. To say I am terrified is an understatement. I have pain where I've never had pain before, and in the last day or so the lump has definitely grown and has become annoying, where as I had not really felt it previously. 

    I have spent the last couple of hours reading this post and its responses. What a wonderfully supportive group you all are. 

    It's the wanting to know, but not wanting to know that I find so stressful.

    wishing you all nothing but the best on this difficult journey 

     

     

  • Offline in reply to Tessieh

    Hi Tessieh welcome to the club that nine of want to be in in the first place.This is Hazsl I am niw 28 month post radiotherapy for tonsil cancer with several affected lymph nodes.Have they mentioned h p v 16 plus to you ? I was h p v 16+ if they do it’s nothing to stress about .The waiting is the worst part hinestjy I was 61 and a wi o but if I can do it anyine can .

    This thread is an old One you can   either start a new post or continue on her up to you or send me a friend request if yiu want to chat privately. The best advise I can give keep off dr google you will only scare yourself even more your mind will go all overnight the place but take strength from me I am living my life this year we’ve been in Spain March to may and September to November riding my bike and living. I have a blog www.radioactiveraz.wordpress.com pop on there’s photos if me and links to others 

    keep in touch Hazel 

  • Offline in reply to SW80

    Hi SW80

    Many thanks for your prompt reply and I'm very happy about your recovery and going back to normal. I will hopefully get further details about the size of surgery this week but your post is really comforting. Did you see any speech therapist and was that useful?

    I am also planning to have a chat with my employer this week once I get further clarity from the doctor. My work requires alot of calls and online meetings so will need to disclose this to them as I will not be able to get back before my speech is back to somewhat normal. 

    Many thanks again - you have no idea how comforting your post and this thread are to me.

    SMSM

  • Offline in reply to RadioactiveRaz

    Hello Everyone,

    I have been diagnosed with tongue cancer last week after receiving the biopsy results. I visited the dentist after having an ulcer for 1 month and they directly decided to do a biopsy. I'm 29 years old and healthy so doctors are checking for P16 association.

    I'm due to get my MRI and CT scan this week for staging but from clinical inspection the doctor thinks it's T1N0 (1.5 to 2 cm) on the left side and base of the tongue. 

    This blog and thread has been really comforting during the waiting time. 

    I'm really concerned about my speech post op and would really appreciate to hear your experiences, how impacted if any and the recovery time. I understand this shouldn't be my focus and getting rid of the disease is my main priority. But most points have been fully covered in many threads and would appreciate your help.

     

    Many thanks and happy holidays everyone!

    SMSM

  • Offline in reply to SMSM91

    Hi SMSM

    Sorry to hear of your diagnosis. I'm 16 months out from completing treatment - surgery and radiation. Mine was T3N0 oral tongue cancer. I had a partial glossectomy and free flap reconstruction of about 25% of the side of my tongue. Mine was diagnosed in the same way, by my dentist after having an ulcer that wouldn't heal. I was 39 at the time and it was also P16 positive. 

    The way I use my tongue has changed but I've been able to adapt and my eating and speech is almost normal. I don't think most people can tell. My speech was about 90% back to normal within a few months of completing treatment. I have an occasional lisp on certain words but it's not bad. Only about 10 months after treatment I presented on a work webinar and I wasn't worried at all about that. 

    I hope that gives you some reassurance. The treatment was tough but i bounced back pretty quickly afterwards. Let me know if you have any questions. :-) 

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.