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

  • Col, Ten minute miles! Slowly slowly! Just trudged 5.5 miles after travelling back from Brum. Wish I could get all my energy back!

  • Hi everyone, it's my first day back at work today after everything that's happened this last year. Feeling very nervous! Wish I didn't have to go back,  feel a completely different person now! But at least I'm in a position to be healthy and to be able to work again. A year ago I was all stitched up and not able to talk or eat properly!

    Off I go, I'm sure it will be ok.

    I will reply to everyone properly and also let you know how I got on.

    Speak soon,

    Nicola xx

  • Nicola

    An emotional day i bet as you try to get you life back to what it was

    I hope it went well,I am sure it did

    I've been watching the tv all night ... the stand up to cancer and for reasons i just cant explain I balled my eyes out over all those stories ... just felt i had a close connection with them all and felt what they went through .... even though my circumstance was in no where as bad as theirs

    Vatch

  • Well done Nicola, hope all goes well for you x

  • Nicola,

    Just seen your post.

    Of course you are a different person to the one who went to work before.

    You're one with an extra load of experiences and understanding.

    Amazing to think you how far you have come  in a year. Well done you.

    Thinking of you and looking forward to hearing how it all went.

    Hugs

    Annabel. xx

  • Hi Irene,

    Long time no chat.

    How are you doing these days love.?

    would love to hear.

    hugs

    Annabel. xx.

  • Hi Nichola

    Just wanted to say well done for taking a huge

    Step forward.you have come along way since

    Last year and I'm sure you are nervous.

    Take step by step and I'm sure you will be fine.

    Hugs hun xx

  • Hi Nicola,

    Wow, what a long way you've come. I remember the feeling of not wanting to go back to work. but after a short while being glad I did. It's all part of the recovery process I think.

    I hope that the first day back was okay for you. How many hours did you go in for? I started at 4 hours or so per day and then increased slowly over the following weeks. I used to be a bit of a workaholic and do 10 or 12 hour days regularly. I'm now careful not to go over 8 hours unless there's some crisis going on. My view of what's important has shifted.

    Keep us posted - we're all on tender hooks.....

    Simon XX

  • Hi Annabel (and all my chatroom pals)

    Lovely to hear from you and thanks for asking!  I'm really good thanks apart from still not enjoying my food much, but I think it is still gradually improving and I know I've come a very long way.  My treatment finished end January and I was back at work part-time from April.  I started off at 2 days a week and gradually built it up with a mixture of working from home and the office.  We have a really big event the first weekend of July (Scottish Game Fair at Scone Palace) which is a really hard slog physically with lots of extra hours involved.  I was pretty worried about how I might cope with that. As it turned out I had a recurrent throat infection all through June which took several courses of different antibiotics to shift, and I wasn't well enough to work the whole weekend.  I've been feeling pretty normal since about the end of July, apart from the food issues, so nothing to complain about, although I do about the food!  I hear myself starting to go on about it at great length whenever people ask how the eating is going and realise I must be boring them to death, so I tell myself I must learn to say 'fine thanks'  and then zip it!  Nicola and Fray Bentos, I think this answers a question I saw in an earlier post and forgot to reply to - your response made me laugh Simon as it's exactly what I feel!

    I've been meaning to post an update for a while but have been really busy with my elderly parents (90 and 88).  Mum was not long home from hospital after her second artificial hip dislocated, then Dad had a week in Ninewells after a nasty fall and bang to the head, home for a week, then has been in his local 'cottage hospital' GP unit for the past 3 weeks.  He's much much better, but getting increasingly frail.  So lots of hospital visiting, occasional overnight stays with Mum.  Glad I have two sisters to share it with but one of them is now away to Ireland to visit her son and family so it's going to be another really busy week.  Hopefully Dad will be back home soon, just waiting on getting morning and bedtime care package back in place for them.

    How are things with you Annabel?  I hope you're continuing to get good feedback at your checkups?

    Well it hadn't clicked until I came on here to read the latest updates that it is a year today that I had my first operation to remove the lump from my neck which started the whole thing.  At that stage it was thought to be in my parotid gland and 95% likely to be benign, so it wasn't until lab results came back that I got my diagnosis on Hallowe'en which will probably stick in my mind forever.

    So many of us had a pretty rotten Christmas last year so hope everyone is looking forward to making up for it this year.

    This forum was such tremendous support for me during the difficult days and it was you Annabel who recommended that wonderful book 'in your face' to me and Nicola.  It helped me a lot and I passed it on to one of my chemo-buddies back in January.   I've just re-read some earlier posts and it's great to see how we have all moved on.

    Nicola - it was great to see your photos and put a face to your name.  I tried uploading mine but had problems with file sizes and cropping, might have another go now that I have a bit of spare time on my hands.  Meantime, if any of you are on Facebook and would like to say hello, you should be able to find me by searching for Irene Johnston (nee Murray) from Bridge of Earn.  My current profile photos are me and my daughter in pirate fancy-dress and a big group of girls in hill-walking gear (Amy and her mates who climbed Ben Nevis for our local hospital's cancer campaign last month).

    Gary (Guzzle) I think I found your page but wasn't 100% sure, I will send a PM in a minute and hopefully you will confirm it's you!

    Best wishes to everybody - keep well.

    Irene x