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

  • Hi I have just completed my first week of Radiotherapy and already I am feeling very tired and have nausea all the time so I am unable to eat any of my blended meals. Is this normal so early on in my treatment? I may ask for some high protein drinks tomorrow as I am not too keen to have a gastric tube fitted this early in my treatment. Has anyone got any advice. Many thanks - Mary

  • Hi Mary, I was also taken aback at how quickly I felt floored by the RT.  Everybody is different though.  I think for most people the eating problems don't kick in until week 3, but for me it was just into the second week.  I was never quite sure whether it was primarily due to the chemo or the radiotherapy (I had double doses of RT to compensate for the Christmas and New Year holidays) but I certainly had fairly bad sickness problems. The thing to remember is that there are many anti-sickness drugs they can try, so if the problem persists, keep letting them know and they should find something that suits you better.  Also I guess all hospitals are different.  Mine fitted PEG tubes as a matter of routine pre-treatment, so I started supplemental PEG feeding around the end of week two. I'd certainly recommend trying the energy drinks first and see how you go.  Don't despair though, they will ensure you get the nourishment you need to sustain you.

    I met a wonderful bunch of people yesterday - we supported each other through the worst spell and all have slightly different tales to tell of our experiences.  

    I well remember how bad I felt with the nausea/sickness so appreciate what you are going through. Hang on in there, keep telling your team when you are having problems (don't leave them till the last minute as I did twice) and keep in touch with us.

    Good luck, Irene x

  • It was a real privilege to meet up with my forum friends Nicola, Simon, Vatch, Guzzle and his friend Jayne on Saturday.  We are planning to get together again so watch this space - all welcome!

     

  • Thank you so much for posting these! Great pictures. It's so moving to see you all together in real life. 

    Lucie

  • Hi All,

    Been away for some time and thought I'd check in again to see how folks are doing. I see that there are some new arrivals on board - wecome to club you didn't want to join! This is a great place to be, get support, share experiences and also pick up tips about how to deal with the various challenges that come along during treatment and recovery.

    I'm still clear of cancer and although there are a few lingering side effects, these are slowly being brought under control through medication (levothyroxine for a dodgy thyroid and something else for low blood counts). Life is good and getting better all the time.

    Recently had the pleasure of meeting some truly wonderful people that I met on this site (see the photos earlier in this thread). The support and advice we shared with each other during the dark days really helped us through it all -  it certainly helped me anyway.

    If anyone reading this is in the depths of CT or RT then take it from us - things do get better although it's hard to imagine that at the time. A year or two ago none of us in those pictures imagined we'd be sitting in a pub drinking and laughing and sharing war stories with our new friends. To all the new arrivals - your turn will come!

    Take care and good luck to everyone.

    Simon aka Dave / Fray Bentos XX

     

  • Thank you.

    it is just starting to feel a little different, a lot of indegestion tired by 4pm and of course the dread that in the next few days life may change a hell of a lot.

    will i cope how i think iam going to been through a lot in life and this is just an other chapter but a pure *** of one.

    Still at least I will have something else to moan about down the pub. lol

  • Hi Ken

    Sounds like your treatment has started and so you have a bit of a rocky road ahead of you.  Good to see that your sense of humour hasn't deserted you despite what life has thrown at you - try and hang onto that!

    As you will see from Simon's post above, this site is great for helping you through the treatment.  It will be tough, but you will get through it.  So come on here to ask questions, have a good moan and know that you will be listened to by others who have 'been there'.  

    Good luck, and keep in touch.

    Irene

  • Sorry to interrupt the thread, but as I'm not able to PM I wanted to ask if Guzzle posts in here, could you take a look at the fundraising section? We are doing the 'Thunder Run' in July to raise awareness for Head & Neck cancer, and as I know you are a keen runner it'd be great to get you involved.

    If anyone else is interested please feel free to check it out too!

    All the best to everyone in their battles

    Leo