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

  • Colin only slight pain so far. I hope Im as tough as you! Most people report some pain towards end of treatment which can actually stop them from eating. IM hoping it wont get to that,

    Regards, G.

  • Deb, will deffo avoid Oramorph as long as poss. Throat feels a bit better today. Constipation is a hassle U can live without! G

  • Hi Guzzle,

    In answer to your questions....

    1. No, Oramorph did not make me groggy. It did deal with the pain and the world seemed a much nicer place once I'd had some! I did get constipated but this may have been due to any one of the several types of medication I was on at the time, including the chemo - they all listed constipation as a side-effect.

    2. I used to run between 20 and 30 miles a week. I gave that up during the treatment and I haven't been able to go back to it. No saliva means that I can't really do anything that involves puffing and panting. I bought an excellent cycle machine and I now use that for fitness.

    3. I only have one or two small beers a day - that's enough for me. I didn't drink for several months after the treatment because I felt sick much of the time.

    Good luck.

    Simon.

  • Simon thanks for the comprehensive answers. Ive just jogged slow 3 miles but I do find it easier going out on my bike. Im only week 3 so Im sure the treatment will catch up with me and Ill slow to a walk if that. Just bough a hat with a flap at the back for the sun which looks ridiculous! Looking forward to getting where you are and enjoying a couple of small beers. G.

  • Just a quick update Nicola - I'm getting my PEG out this Friday afternoon.  They gave me the choice of 'yanking it out' which entails a couple of seconds of mild pain (some say 'is that it out then'? others describe it like a punch in the stomach) or waiting much longer for a theatre appointment to be put under, have the added risks of anaesthesia and inability to drive home etc etc.  I asked what the majority plump for and they said the former so I took a big breath and said OK let's go for it.  She assured me there would be no after-effects (it's my birthday the following day and my sisters are taking me out for the day), just as I had read, the hole heals up in a couple of hours and there should be no pain or complications at all.  Fingers crossed and will let you know how it went.  She did assure me it's a piece of cake compared to having it put in which I won't forget in a hurry!

  • Hi Irene,

    Good luck on Friday, am sure it will all be fine and have a Happy Birthday on Saturday. Hope your sisters really spoil you.

    Hugs

    Annabel xx

  • Hi Irene,

    Good luck with Friday. I think you made the right choice, especially to be OK for your birthday

    I think the thing to do is to try and relax when they do it so that it can come out more easily.

    Thats what they told me to do. Probably worth asking if they don't say.

    Colin

  • Irene, Hope depegging is ok and that you have a wonderful birthday. Regards, G.

  • Hi Irene,

    Friday will be a breeze, and you'll feel great when you don't have that tube hanging around.

    It only takes a few seconds and it's no worse than a visit to the dentist.

    Look forward to a tubeless weekend!

    Simon XX

  • Hi Irene,

    Happy birthday. I hope all went well yesterday.

    Colin