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

Parents
  • hi nicola.. i have just been diagnosed with midline tumour tounge base also epiglotttis extending into my left right lymphnodes.. i the same was brushed of by my gp also another hospital.. went to another hospital they said without any biopsys that it was cancer, now refered to yet another hospital that deal with head & neck.. i was at first led to believe it would be an opperation to remove then radio & chemo.. but no opp, chemo radio intensive thereapy for 6 weeks.. im quite anxious angry upset & scared... i hope all works out for you. take care good luck x

  • Hello Zoe and welcome to this thread.  So sorry to hear about your diagnosis, but just a quick message to hopefully give you a little reassurance and encouragement.  In 3 days time it will be exactly a year since I discovered the painless lump in my neck which turned out to be a secondary tumour from a primary cancer in my left tonsil/base of tongue.  I had absolutely no idea there was anything amiss in my throat, the lump was the first sign.  I well remember what a worrying time it was during biopsies, scans and awaiting the dreaded results.  However I'm pleased to report that today I had my 7th monthly checkup since my treatment (6 weeks of daily chemo-radiotherapy) ended and all is well.  If you read back through this thread you'll probably see that I've done a lot of moaning about the fact that I'm not enjoying food much, but oh what a long way I've come since January. I managed to get back to work part-time in April and full-time (6.5 hours a day for me) by May.  So before you know it, you will also have emerged from the other end of the tunnel and look back and see the amazing progress you've made.   Everyone is different though, and it's important to remember that we won't all have exactly the same recovery experiences. Some are still experiencing chronic fatigue (which has not been so much of a problem for me), some are able to eat better than others and recovery of taste/appetite seems to happen in varying degrees.   You'll see that lots of us have shared the experience of this pretty gruelling treatment and know how tough it can be, but the time will pass quicker than you think and it will all have been well worth it.  I wish you all the best and will be following your progress. This forum has been a Godsend to many of us and I hope you will find it helpful too - ask questions, voice your fears, vent your rage, shed some tears, and even have a few laughs along the way about what may well be a completely different relationship with food - I could rabbit on about that forever but I'm not going there tonight!!!  Seriously though, keep in touch and hopefully gain some strength (and helpful tips) from others who have been there. To all my other friends, sorry I've not been in touch for a bit, all going well, will write more soon.  Love, Irene x

Reply
  • Hello Zoe and welcome to this thread.  So sorry to hear about your diagnosis, but just a quick message to hopefully give you a little reassurance and encouragement.  In 3 days time it will be exactly a year since I discovered the painless lump in my neck which turned out to be a secondary tumour from a primary cancer in my left tonsil/base of tongue.  I had absolutely no idea there was anything amiss in my throat, the lump was the first sign.  I well remember what a worrying time it was during biopsies, scans and awaiting the dreaded results.  However I'm pleased to report that today I had my 7th monthly checkup since my treatment (6 weeks of daily chemo-radiotherapy) ended and all is well.  If you read back through this thread you'll probably see that I've done a lot of moaning about the fact that I'm not enjoying food much, but oh what a long way I've come since January. I managed to get back to work part-time in April and full-time (6.5 hours a day for me) by May.  So before you know it, you will also have emerged from the other end of the tunnel and look back and see the amazing progress you've made.   Everyone is different though, and it's important to remember that we won't all have exactly the same recovery experiences. Some are still experiencing chronic fatigue (which has not been so much of a problem for me), some are able to eat better than others and recovery of taste/appetite seems to happen in varying degrees.   You'll see that lots of us have shared the experience of this pretty gruelling treatment and know how tough it can be, but the time will pass quicker than you think and it will all have been well worth it.  I wish you all the best and will be following your progress. This forum has been a Godsend to many of us and I hope you will find it helpful too - ask questions, voice your fears, vent your rage, shed some tears, and even have a few laughs along the way about what may well be a completely different relationship with food - I could rabbit on about that forever but I'm not going there tonight!!!  Seriously though, keep in touch and hopefully gain some strength (and helpful tips) from others who have been there. To all my other friends, sorry I've not been in touch for a bit, all going well, will write more soon.  Love, Irene x

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