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

  • Hi all, I just had my 10 year check - they don't want to see me again. Did anyone have their soft pallet removed with their Op? I cannot swallow at all and wondered if this was the reason. I can only sip drinks and have to tip my head back so the liquid runs down my throat. I lost about 60% of my tongue and cannot manoeuvre food in my mouth. Food aside, all else is great. I am 81 next week and life is good.

    Colin

  • Well done Colin thats a milestone we would all like to get to, you give us all hope for the future. I have lost a third of my tongue plush left with a very painful neck resection but that's all thank the lord. Not having a soft pallet must be so difficult. I know what you mean about food, I find any food difficult to turn in my mouth. I choke a lot if I am not really careful with the type of food and can only have small spoon falls . I also have a lot of problems with the food falling under my tongue and getting stuck! Most annoying !

    So so please with your news, keep well

    Regards Carol

  • Hi'

    A little off subject but :

    I had my tongue Op. ten years ago and have MICKEY PORT PEG fitted since then so I can inject nutrician directly.. (A drip)

    Has anyone else had similar?,  I have always had a small discharge of mucus which I clean with alcohol

    and then Bettadine (Iodine). I wonder if this is normal. I have had no problems with this. My French doctor gave

    me an anti-biotic which did not cure it.

     

    Colin

     

  • Hi Colin

    i had the same during and a year after treatment. I had several infections of mucus coming out of the area. I had antibiotics a few times and eventually it cleared up. I'm trying to remember the name?????? They were strong from the penacillin family. 

    I think it's so easy to get infections there, all you can do is clean with alcohol every day.  I kept mine cover with loose gauze as well to avoid contamination.

    take care

    Carol x

  • Hello, I'm wondering how long it takes to learn to speak normally after having part of the tongue removed. I'm probably worrying needlessly but I had a biopsy 5 days ago and my dentist is pretty certain that the shape of the lump indicates cancer. As a teacher my immediate concern is my speech and I can't find much information about this. Any advice would be welcome. Thank you, Heddus
  • Hi

    i hope you get a negative result but if you do have to have the lump removed then it will depend on the size and which part of the tongue it is in. My lump was 9mm on the middle to right hand side of my tongue. The only problems I have is lisping if I talk a lot, otherwise my speach is fine. 

    Good luck with your results etc and please come back to us with your progress so that you have some support.

    kind regards

    Carol

  • Hi Carol, That's reassuring to know; my lump is on the side of my tongue. I'm a 52 year old non-smoking female and although I enjoy as much wine as the average frazzled teacher, I'm not a heavy drinker so hopefully the results won't indicate cancer but I'm not counting my chickens. Thank you ever so much for taking the time to reply - I really appreciate it. I hope everything is going well for you now. Regards, Heddus
  • Hi

    I had 19’ by 15’ mil cancer removed from the middle right side of my tongue 18 months ago.  I had a speech therapist assigned to me but I think within six months she signed me off!  It hadn’t spread so I didn’t need any further treatment so I was back in work within three months, I did have a lisp (and was concerned about spitting ) but you learn to adapt.  Lisp isn’t as bad now, I avoid some words but has got better quite quickly.

    I am a now 43, never smoked, but do like a few glasses of red.  Keep in touch and let us know how you are getting on. 

    xx

  • Hi I’m a talking therapist and losing my Tongue was a huge fear. My op was 4 weeks ago. Speech amazingly good and Evertyone can understand me. Also doing my tongue exercises. I promise you’ll be fine and you wil adapt and others will also adapt around you. Best of luck Paul

  • Thank you Kaz and Paul for your reassurance I hope you're both doing ok. Regards, Heddus