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 there Heddus.  Everything is tightly crossed that your biopsy proves negative.  However IF it doesn't, you've come to a great place to get support from others who are going through it alongside you. My primary site was left tonsil, so I didn't need tongue surgery and can't help or advise on that.  However I did make a couple of friends during the course of my treatment who had, and they didn't have prolonged speech problems - but every case is different as I'm sure you are aware.   There's a wonderful, plucky young lady called Nicola who started this thread.  She went through all this when her little girl was only 2 and she did undergo tongue surgery with tissue replacement.  I am very fortunate and proud to have gone through 'my journey' alongside her and a 'gang' of others in 2013/14 (pictured in my Avatar).  We met in London in 2015 then Liverpool early this year - next time Edinburgh when we are focussed on celebrating the magical 5-year all-clear in early 2019!  I do hope your fears are unconfirmed.  However IF you end up 'joining this club' I'm sure you'll be very glad that you dropped into this wonderful forum.  Please let us know how you get on? Wishing you all the very best, Irene J x

     

     

  • Hello Irene, Thank you for taking the time to reply. I have read all of this thread and I am full of admiration for the way you've all coped with what you've been through - I'm sure people reading this have found your experiences a valuable source of information and have been comforted knowing that you've come out the other side. I feel as if I know you all! This waiting game is terrible, isn't it? Regards, Heddus x
  • Hi Heddus, the waiting game is really dreadful, I remember that time so well - exactly this time of year as it happens, I got my diagnosis on 31st October 2013!  Keep your chin up and let us know how you get on? Irene x

     

  • 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

  • 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

     

  • Hi Nicola

    I hope everything goes well for you, I have been told it is really important to remain positive and as stress free as possible. This may be easier said than done.

    I have a 1.5cm tumor on the back of my tongue, I only found out yesterday. I have an appointment with a consultant next week. I am guessing the next step is a biopsy?

    I was until yesterday a perfectly healthy 50 year old man. 

    I have not told anybody yet. I think i will wait and see what happens and maybe I will share with family member, I don't want too many people knowing. 

    Hope things go well Nicola

    I am just trying to get things off my chest

    Thanks 

    Pat

     

  • Hi all,

    I'm not sure if this group is still active but...

    I am sadly a new recruit to this group. On Friday I was diagnosed with a Stage 2 cancer on my tongue, the CT and MRI came back showing no signs of spread. My consultant wants to do an operation to remove the cancer from my tongue (2.1cm) under the right side, and also do a neck dissection to remove the lymph nodes.

    Pretty worried about it all and reading this forum has been such a comfort to know I'm not the only one.

    Just so confused at the moment I'm 29, never smoked and don't drink.

    I'm mostly worried about how my family are going to cope as we go through this journey, I am trying to stay really positive about it especially around them as I don't really feel that telling them about me being scared might make them feel worse :s.

    Thanks

    Joe

  • Hi Joe,

    Sorry to hear this news and you must be very worried about what is to come. I remember it well and like you, was told more or less the same thing at first about a neck dissection and a partial glossectomy. 

    It is all so scary at first and it is a difficult time but please be assured that you will get through it. For me, the surgery was the easier part (although not pleasant!) but now you would never know that I’ve had done. Life is good and I live a very normal life. I have just been on a cruise to celebrate my five year cancer free milestone!

    Your family will probably be the ones that get you through it, my little girl kept me positive and a reason to keep going which was the only thing I needed. We are very lucky have our NHS, they will work wonders for you and before you know it, this will all be over. 

    Stay at in touch, let us know how you are doing. Let us know when your surgery is and perhaps I can give you some tips or advice.

    Take care,

    Nicola

  • Dear Joe and all other 'newbies' embarking on this journey......

    While it's hard to read about others going through the anxiety, emotional turmoil and gruelling treatment following a cancer diagnosis, I'm so pleased to see that Nicola's thread is still going strong and she continues to share her experiences with others.  

    I also underwent treatment for head & neck cancer in 2013/14 and Nicola's thread was truly the very best support for me as I went through similar ups and downs. 

    Through this wonderful forum I have been blessed to make and meet some very special friends - Nicola, Simon (AKA Fray), Guzzle (Gary J) and another Vatch (AKA Gamma-ray Gary) - I commend his wonderful blog gammaraygary.wordpress.com.

    We all met up in London in 2015 and got to meet Guzzle's lovely friend Jayne who had been through a dreadful skin cancer experience and has been part of 'our gang' ever since. Two years later we got together again in Liverpool when my husband Malcolm and Vatch's lovely wife Claire joined us. Some of us have just had another reunion in Edinburgh this weekend to celebrate our 5 year mark.  Sadly our 'founder members' Nicola and Simon/Fray/Dave couldn't join us but we hope to meet again in Bristol later this year or early in 2020. 

    I will never forget how much support, encouragement, friendship and laughs (as well as tears) this forum and these lovely people brought to me - just invaluable! 

    In the hope it might help others approaching treatment, going through it, or in recovery - here we are yesterday, very much enjoying life.  My avatar photo shows the whole gang in Liverpool 2 years ago.  Sending positive vibes to you all x

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  • Hi Joe

    Sorry to read of your news.

    I went through surgery for the same last month. I too was pretty much floored and wasnt sure if I could do it. But the folks on here gave me the push I needed to go for it.

    You will be surprised at how you will recover,Im 6 weeks post op and fine,eating well, all healed up just a few twinges in neck scar to remind me. The numb areas will take a while to come back, but I hope not too long.

    Your scan results are great news though, thats just what you want to hear.A wee bit positive news!

    If you stay strong your family will too. My advice dont overthink things just take things a step at a time,dont overload yourself with worry and stressing.

    Take care & best wishes xx