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

  • Thanks Irene for your message:)

    Hi Vatch, I go in a week and a half time, quite quick, thanks for your wishes. Good luck with your results.

  • Hi all, Sorry I've not posted in a while but life has stepped up a gear since being back at work. I've been slowly increasing my hours, a little way to go yet before I'm back to full hours, thankfully I have very supportive employers. Roz Dog, I'm sorry to hear your news, not what you wanted but at least it's been picked up and being dealt with. I had a neck dissection, it was easy peasy! So hopefully will be for you too. You must have had it by now? How are you doing? When will you know more? I hope the tongue is continuing to get better too. Vatch, you are a real trooper for getting back to work so soon, I hope it's going well. I'm tired out too afterwards, similar to how I felt soon after treatment ended, fatigue is a funny thing. You are so very right that people don't understand the gravity of what's happened, but I've learnt to let it go over my head now. Is your peg out yet? How are you getting on with food? Do you think you'll be able to enjoy Christmas lunch? Jo, lovely to hear from you and I hope you are getting along well since your last op - I must update myself with your thread as I haven't been on here for a little while. The tips on how to navigate we're very useful - thanks! My news...I had an MRI scan last week. I have some pain in my tongue which had lasted for a good few weeks so I mentioned it at my recent checkup and they booked me in for a scan. I'm surprised they went straight in for a scan but it is a bit of a relief too. I'm waiting on the results now, I'm not too worried though. I think I've learnt to live with these worries that crop up, this is the fourth worrying time this year what with other biopsies etc. I went out for lunch with some people from work last week. I played it safe and had sausage and mash with plenty of gravy and lots of water. I'm quite proud of myself as eating is a chore now and finding something I can manage is difficult sometimes. I also didn't know these people very well so I was nervous about eating in front of them (sometimes swallowing is difficult and food gets stuck in my mouth where my tongue can not manoeuvre it very well!) but I managed it and I was pleased! Now to find some tasty snacks for Christmas time! Speak soon, Nicola xx
  • Hi Nicola, lovely to see your post, but fully understand why you've not been on the forum for a while - that pesky work gets in the way! ;) Great to read that you managed a lunch date with your work colleagues. (Can empathise as I find eating out a bit stressful with a stoma! Never know if he's going to behave, haha!) I bet your little girl will be getting excited about Christmas. I seem to remember a few of us having a less than ideal Christmas last year for various reasons! To save you trawling the forum for my latest results, I had some great news last week. The mass the doctor removed from my abdomen was benign (neuroma) It felt like Christmas had come early and I could have kissed the surgeon! :) I'm now waiting for the lung team to be in touch to discuss the next surgery, but until then, I'm enjoying this medical free period especially as the surgeon told me to enjoy a tipple over Christmas. Hopefully, we'll chat again before too long, but meanwhile, take care, Nicola and don't get over doing things! Hugs to you, Jo xx
  • Oh wow Jo that is great news! My heart did a little flutter in my chest as I read your reply, what a huge relief! What good news just before christmas and yes we did have a bit of a miserable one last year, I hope you'll enjoy it more this year especially after some good news. Even though you know you have more surgery to come at least you have a bit of a break from it all now and at the perfect time of year. I must admit, I was getting a little anxious about Christmas this year, as it brings back a lot of bad memories and I've been a little emotional. Last Christmas was written off what with being so ill and I couldn't eat or drink a thing, I was solely relying on my PEG. I even had to put the Christmas tree in a different corner of the lounge this year to avoid reminders! Daft I know but it helps! Thank you for sharing your brilliant news, take care and hopefully we can "chat" again soon xx
  • hi there all ... has anyone heard fro Simon lately .... have you guzzle? I hope you are all doing well and a Merry Christmas to you all
  • Hi Vatch, no not heard from Simon since the new version of the website. I wandered if he also was experiencing problems with logging on? Hopefully all is ok with him and he will be in touch soon x
  • Delighted to get some glad tidings - your news is fantastic Jo!  Hope you have a wonderful Christmas and enjoy your little tipple.  

    Last week I had the most enjoyable meal out ever since being ill.  It's still all a bit 'hit or miss' and I wasn't looking forward to it much, but we went to a wonderful new local French restaurant with a great reputation and I made all the right choices.  Taste buds are definitely still gradually improving and I got the quantity and consistency right on THREE courses with a glass of milk to help the main (fish) course down.

    Simon, hope the dratted technology lets you catch up with us soon, would be great to hear from you.   Lots of love and best wishes to everyone, Irene x

  • Hi Irene, good to see your post! So glad you had an enjoyable meal and that your taste buds are improving. I remember you saying a while back in a post, how we all deserved a great Christmas this year! Cheers to that, lovely lady! Take care, love and hugs, Jo xx
  • Hi all, went up shard yesterday and had a curry in brick lane. Brekky in borough market, Harrods then home to Liverpool. Merry Xmas to you all. Let me know if Simon checks in!
  • Hi Guys, 
     
    I hope you are all well. 
     
    I just got out of hospital for my neck dissection after two weeks. Not that long but more than I expected. 
     
    The original neck dissection operation was a success but I developed a chyle leak once the surgery was complete. I woke up in intensive care a day later and that worried me. But a doctor came around and said this leak was not life threatening and the next day I was moved to a normal ward. 
     
    The hospital was really quick in arranging another operation as they had to go in a block this leak, I was filling about four or five drains a day with this white/yellow stuff, in they went through the ribs rather than through the neck again as they said this was best and used keyhole surgery which only took an hour or so to block a duct. The leak then stopped. I have had hardly any pain at all, only pain was from the lung/chest drain relating to the keyhole surgery, and that was only when I was walking about. Consider myself very lucky everything was fixed, people really went out of their way to make sure things happened, wish I could thank them all. 
     
    I spend the rest of the time recovering although once I started eating I was much better and once my drains was out they said I could go. 
     
    So pleased to be out for Christmas. All the doctors and nurses were very professional and nice and I could not fault them one bit. 
     
    I am able to eat as before my jaw just feels like it is swelling after eating for a while then I give it a break. 
     
    Results due in a few weeks for my dissection but I will forget about that over Xmas and try and eat a bit of Xmas dinner. 
     
    Happy Christmas to you all.

    Good luck with your results Nicola