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

  • Nicola, lovely to hear from you and delighted you both had a good time. Paris sounded lovely. Haven't been for a while so may take my boys over Oct half term. I believe apartments are reasonable for groups. Im trying to get back to fitness but as you know its tough. I do find a little excercise and fresh air makes you feel good. Have managed to slowly run a few miles and cycle 15. Am going to attempt Liverpool to Chester charity ride Sunday which is 50 miles but if its too much Ill just stop half way and train it back. You are tougher than me though - you have managed wine and I cant even get a beer down yet! Good luck with peg and keep us posted. If I manage the ride Ill put a photo on FB if anybody is interested.

    Regards, Gary

  • Hi Nicola

    So good to hear you (or your daughter) enjoyed Disneyland so much.  We took our daughter wen she was three over to Florida and yes it is all walking but at least they sleep well at night.

    Good news on the ulcer as well and that your Consultant will see you in his clinic on a regular basis rather than when you go the dental clinic.  Must be a huge relief to you.

    Will keep everything crossed that the peg comes out easily tomorrow.

    Work has been fine.  Did three mornings first and second weeks, am doing five mornings this week and doing a couple of full days next week.  Hoping that by early July I will be back to full time (well apart from the various scans and appointments). 

    Virtual hugs on their way.

    Gill

  • Hi Nicola,

    I read your update on my way into work today and it really cheered me up. I am so chuffed that you managed to get some reassurance before your trip, and then that the trip went so well. As mentioned before, your ulcer issue sounds almost identical to the problems that I had - the fact that they do not go away in the timescales mentioned on the NHS site sets all sorts of alarm bells ringing. It is good that you have a good consultant who took the time to explain things thoroughly to you. It also helps that you were fairly assertive around this - sometimes it pays to exert a bit of control and pressure.

    I hope that the PEG removal goes smoothly - it'll be over in a flash and you'll lose your dangling friend!

    Well done and good luck.

    Simon xx

  • Hi Nicola

    I'm so pleased that you had a fab time in eurodisney. I took my son when he was one and we had a great time although it was in December and freezing! We loved it though.

    My peg removal was a breeze and it's amazing how quickly the hole closes up - hours rather than days! I really hope yours goes as smoothly. I did find it weird once it was out and I kept forgetting it had gone.

    Debbie

  • Hi Nichola

    I'm thrilled to bits that you've really enjoyed your holiday and that everything fell into place beforehand so you didn't have to go away worrying about that ulcer - what a relief it must have been.  I felt the same as Simon, it really cheered me up.   Also delighted to hear your long-awaited PEG removal was happening today.  Hope all went smoothly and you enjoy being rid of it dangling around.

    I'm doing away fine but for the last 2-3 weeks have had a cold with persistent cough and taste buds have taken a massive step backwards.  Have also had an over-sensitive mouth, so I've really not been enjoying eating again for a while.  Went to GP last week and had to give a sputum sample which revealed there was some bacteria and also turns out I have thrush again.  Did others get bouts of thrush throughout their treatment?  I had frequent conflicts between hospital and GP as to whether I had it or not.  There has been no visible sign lately (like white furry tongue) but I'm now wondering if this and the mucus infection have combined to make eating such a hassle again.  So tonight I am delighted to have a course of anti-biotics and thrush treatment and am hoping that once these work their magic I will get back to where I was 3 weeks ago - begining to enjoy some of my meals again and certainly managing to get bigger portions down.

    Best wishes to all my friends on this thread - great to see everyone supporting the two Gary's now.  Guzzle - well done on reaching the end of your treatment, sounds like you are eating really well and managing to keep pretty active.  Vatch - how's it going with you, any news on your treatment plan?

    Jo - how have you been since your op?

    Love, Irene x

  • Hi Irene,

    I too suffered from the dreaded oral thrush. The symptoms were a very heavy furry coating on my tongue. Antibiotics turned out to be a waste of time for me but a medication called Ny***** (can't remember the precise name) did the trick. My tongue is now totally clear and bright pink - it does get sore very easily and I'm very sensitive to hot drinks or food. Like most people in our position I can't deal with anything containing black pepper or any degree of spice. I hope that you get the thrush sorted soon because I know that it can be a real nuisance.

    Good luck.    Simon xx

  • Irene. Sorry you have thrush. Dodged it thus far. My neck has healed two weeks to the day post treatment. Taste not right although I can eat well and have actually had a beer! How much taste did you get back? Ive developed a sweet tooth! But cant do spices which I loved. Managed 23 miles on bike today and going to attempt the Liverpool to Chester 50 miler Sun but as Simon advised me running is tough. Even a couple of miles hurts;

  • Hi Gary - Glad to hear your neck has healed up quickly and that you've managed a beer as well as eating well.  My taste was just beginning to improve slightly when I got this blasted infection which has knocked it right back.  I got a bit down recently when I met someone who had had the same treatment 12 years ago and still doesn't enjoy his food.  However as they keep telling us, everyone is different and hopefully that won't apply to us!  Like you, I am much fonder of sweet things than I used to be, but not chocolate, which I used to love.  Likewise I can't eat anything spicy now either, which is a bit of a bummer.  I think the sweet tooth is quite common after RT.  Don't overdo the running but sounds to me like you're doing amazingly well with the cycling.  Keep up the good work.  Cheers, Irene.

  • Hi Everyone!

    Have cheated and cut and paste this from my thread - hope that's ok?

    I'm back in cyber space! Some of the time I've not been sure what 'space' I've been in! That's Tramadol for you!

    Well, the operation went well, all 3 tumours removed and 40% of my liver resected!

    I spent 2 nights on HDU and was then transferred to the post-surgical ward. My partner was initially overwhelmed to see the amount of equipment, wires, drains and monitors.  Couldn't really see from my vantage point, so he took a photo - Wow! I looked like I'd been operated on by Dyno-Rod!

    I was actually discharged aft visiting last night, but have been having some pain issues, so this is the first time of 'logging in!'

    This op has made me feel more poorly than the bowel resection, but the specialist nurse warned me that I'd feel more 'rubbish' at the beginning, but then recovery would seem to gather pace more quickly!

    The dog was so thrilled to see me - and the 'Don't jump up!' Training that my partner had done in the time I was in hospital, really worked.

    He seems to know I'm not the ball throwing, mate I was before I 'disappeared' but he's very happy to sit at my feet (or lie next me at nap time! Yes, naughty I know, but it's so comforting to have them there!) This is the dog I'm talking about, by the way!

    (Partner very wonderfully, supportive as ever too, but better at cooking etc rather than lying by my feet!   )

    Well, I'll leave it there, as no doubt, I'll stop typing and feel wrung out again!

    I'll catch up with your news over the next few days and drop you some messages, but bear with me!

    A 'classic' comedy moment alert!!! - I was offered Braised Liver for supper last night! Really??? The irony made me chuckle - maybe that's why they offered it, isn't Iron-y good for the liver??

    Bye for now, love to all and hope you're all ok!

    Chat soon, Jo xx

  • Irene choccy is a no no for me also. Marmite is ok though! Have had a korma which was ok. You will enjoy your good again Im sure

    Coffee is also good!

    Jo you rest and recover. England are out so you will get undivided attention. Discovered s French chilled out band called Nouvelle Vague. Have a listen whilst on meds! It should sound great!

    have lovely weekend.