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Tongue Cancer - Diagnosed two days ago

Nicola2209
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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 JoeMac

    Joe, how is your recovery going now? 

  • Offline in reply to SW80

    Hi, so I’m a little over a month past treatment my taste buds are back if not a little odd and confused about different flavours at the moment . But I’m feeling great in myself it didn’t take long once I started eating properly again.

    i lost a total of 20kg which a lot was muscle mass as I used to be a big swimmer. I’ve just signed up to run an ultra marathon in June (100km in 20hrs) as a target to really focus on getting better

     

    hows your treatment going? Must be nearly at the end now

  • Offline in reply to JoeMac

    Hi Joe, wow your recovery has been super fast! Do you have any pain remaining? Are you eating fairly normally? What was your surgery, did you have a reconstruction?

    yes I’ve just finished, I posted my update a few posts above.

    an ultra marathon, impressive! Which one are you doing?

  • Offline in reply to SW80

    Hi my name is Tracey I had surgeryv2 weeks ago today cancer of the tongue , I’ve had partial tongue removal and  left neck dissection but m my scary in neck is basically ear to ear now await g results tonsee uf soread to tisdues and nodes , mynpsun after 5 days was not to bad but but over the weekend I’m in agony spasms in face ear and neck , my tongue still feels thick so I’m only managing soft foods still , just need to know if all this is normal , my shoulder is giving me so much discomfort ,I’m strughking to lift and even get comfettabke , feel like I’ve gone backwards instead of forwards , on 10 mg of oxycodone quick release 4 times a day and they have started me on slow release every 12 hours 10 mg as a top up , can you give me any advice if this is all normal , im

    trslky struggking today andcquite emotional x

  • Offline in reply to noonie64

    H Tracey 

    Welcome and so glad you have found this forum   as you will really find some wonderful support here. Your surgery sounds like you’ve had very similar to mine (5 years ago). I would say that at the moment everything that your feeling sounds pretty normal. I don’t know if your going to have radiotherapy/ chemo after your neck op?  Hopefully not, but don’t be too alarmed if you do as many of us have. It normally depends on your lab results on your lymph nodes. I had cells in some of mine but they were well contained so my treatment was labelled as a belt and braces job in case there were any undetected.

    Your tongue will be sore for a while yet but it will recover fairly quickly, like you at the stage you are now ,I just had to eat soft food and took plenty of painkillers and mouth wash. Eating will be more of a problem if you have to have treatment?? 

    Your shoulder problem is normal and will be painful and stiff so you do need to do your exercises.  Stand facing a wall and walk your left hand up the wall as far as possible to strengthen the shoulder muscles on that side otherwise it will be very stiff  and difficult to raise your arm long term. I did it every day and now my arm raise is only slightly less than the other. 

    The surgery is all over now so keep looking forward and think of that Christmas dinner! 

    Well done brave lady, always here with any questions 

    kindest regards

    Carol

     

     

  • Offline in reply to noonie64

    Hi Tracey. I had same op on right side. Its not that long since your op so you will be pretty tender.

    I was told to expect nerve pain as they cut through them getting to nodes,and yes you get quite a belter of pain at times. It takes time but it does improve.I am numb on right side of face and neck I think it is now going to be more or less permanent. Having the area touched at checkups was and is torture.

    I began stretches and facial excercises as soon as I could,they do help.Also when the scar was well healed I massage with bio oil gel that has helped alot too. My shoulder gives me trouble too again I do shoulder lifts and it does help. Theres some physio videos online that are really good too.

    Hang in there it does get better.xx

    PS> my facial pain was trigeminal nerve pain,no painkillers touch it.

  • Offline in reply to clara56
    Thankyou for you’re reply all helps me understand how alls coping you’re a star I’m very greatful for advice x
  • Offline in reply to kirkc99

    Thankyou so much , your  advice is very welcomed , im

    awating results from my lumps and tissues , what does belts and braces mean please , I just wish I  had asked earlier about recovery , I honestly thought I’d be well after a few weeks , they make it sound so simple ,  I also have a numb ear  , and feel like my nerves are all  out as even my clothing hurts my skin at min ,then you come back from theatre and you seem to have lost part of what ever they say to you , im struggling a bit today my emotions getting the better of me , but if I cN be as strong as you and everyone take on here then I will be good , I can’t wait for Christmas , how many weeks months or years are you now from surgery please , I m greatful for you’re reply xxx

     

  • Offline

    Like you ive read up and had scans mri and god knows what I was misdiagnosed too was told by first consultant it was not cancer , but my dentist pushed me to get a second opinion , so I did had a biobsy 19 th July and results 29 then, surgery cancelled due to some emergency and I was rebooked for the 9 th September , been. A whirlwind few months , for something so small surgery is quite invasive , but yep I’m strong and I’m so not going to let it beat me , I’ve to small grandchildren I want to see grow up , im

    onky 55 still got a lot to do , so no way is this bloody horrible C word having me , keep strong lots of love thhsnkyou for chatting to me xxx 

  • Offline in reply to noonie64

    Belt and braces just means they gave me radiotherapy and chemo to make sure i had the best outcome incase there were cells in the nodes they had left behind. My tongue cancer was just over 5 years now.  My face is still numb and my neck has all the nerve endings feeling your describing but it does get much easier as time goes on and you get used to a different way of life. I believe in being positive and like you I have grandchildren to keep me going! Keep in touch with your progress as it’s so good to talk when you have so many questions going on in your head.

     

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