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

  • Irene this has been a lifeline. And whilst I have time on my hands I get to chat to nice people. Some having a much harder time than me. People like Nicola,you feb,access and many others put me to shame. Just want to get on with treatment now but it will be about 6 weeks until neck heals. Post op is great and been for gentle walk today. Weird place where my tonsil was but pain fine with paracetomol. I will ask about peg at MDT next week but intend to eat really well before RT! Good to hear you are recovering.

    G.

  • Hi Guzzle

    Good to hear you are recovering well from the tonsillectomy and yes you should certainly enjoy the excuse to eat well and pile on the pounds before your RT starts.  Compared to many others both on this site and friends I've made in hospital, I think I've got off reasonably lightly, i.e. not a full neck dissection, just removal of a lump, then like you a tonsil out.  I've met several others who have had to have their tongue reconstructed and am amazed at how well they have coped.

    Keep up the good work mate.

    Irene

  • Irene cheers. I had a partial dissection , lump out and one tonsil . I do wonder why he didn't take both and must ask next week! I will be keeping an eye on your food! Did you manage to take any gentle strolls etc during RT?

  • Hi Guzzle

    I was the same as you, they only took the left tonsil out.  Mine started there/base of tongue and the lump on my neck (the first sign to me there was anything wrong) was a secondary tumour.  They took some biopsies from the other side of my tongue/throat while I was under, but didn't remove the right tonsil.

    Yes I did manage to go out for gentle walks during RT.  I had quite a lot of naps, and tended to fall asleep at the drop of a hat in the middle of reading, watching TV etc but I did get out for a bit of exercise in between.  Are you having chemo as well or just RT?

    Six weeks sounds like an eternity, but I'm sure you'll find it passes quickly.

    Cheers

    Irene (enjoying my Weetabix!)

  • Hi Irene got full meeting next wed but thus far only RT mentioned. I rediscovered joy of weetabix in hospital! Wish I could just start and get into it but should get a date next week. want a time scale to work to getting back to work and maybe taking a holiday but know its gonna be tough

    enjoy wetabix. G.

  • How did it go today Guzzle?  Do you have a schedule now?  Hope all went well and you are feeling positive.  I am eating better every day.  Can't say I'm enjoying it much but I haven't used my PEG for nearly a week now and think I've maintained my weight - tomorrow morning's weigh-in will tell!

    I.

  • Well done Irene for eating! I must say that there was a noticeable difference for me when I got to three months post treatment,  I started to enjoy some foods again, although I'm a bit scared of using a fork now! I prefer a spoon as my reconstructed tongue is quite delicate. Another month for you and hopefully you'll be the enjoying food too. How are you getting on being back at work?

    Guzzle, I hope all went well today, let us know how yore doing. There lots of us with plenty of tips and advice we can share.

    Nicola xx

  • Hi Nicola,

    Sorry for the late reply, but what fantastic news on your earlier post about your last results!

    I'll catch up with you soon, but now I need to get some sleep! 30 little 4/ 5 year olds to deal with tomorrow!

    Irene, hope your return to work is going ok! I see you (and this thread) are supporting Guzzle too!

    This forum is great!

    Night night all, Jo xx

  • Hi Jo

    Thanks, my first week at work has been good.  Glad to be back, but breaking in gently and gradually increasing my hours each week.

    Yes, this forum has been a huge help to me, so least we can do is try and help others through it too.

    Hope your little darlings are behaving themselves!

    Irene x

  • Ladies, hope you are all well. I am having 6 weeks RT with 3 chemo start , middle and end. I will be counting on your  good advice ! You are veterans now along with Blod and others. Just done 25 miles on bike along Sefton coast. Cant believe Um ill! Go for phantom mask fitting and dentist wed.

    Regards. G.