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

  • Thanks Gill and Simon, I appreciate your encouraging words. This really is torture!! I'm beginning to think that I should have just taken the Monday appointment for the biopsy so the results would be ready when I got back, too late now though. I keep thinking the worst and I don't know how to deal with this worry, it's going to be a good three weeks before I know anything and I can't seem to find much info on recurrent tongue cancer except that further treatment isn't usually an option, only surgery. It's not that I panic every time an ulcer appears, I've had loads since treatment ended but this one has hung around for three months now and is looking and feeling more and more similar to the original one last year. I've also been having sharp pains in my neck too. It's also really hit home now how cancer is always going to affect my life - whatever the outcome of this, there will always be that cancer cloud above my head. But I'll live with that, so long as I'm here for my little girl. I'm so, so worried!

    I'll keep you all updated and let you know how the biopsy goes.

    Nicola xx

  • Hi Nicola

    I'm sorry you now have something else to worry about. Hopefully it's nothing. I don't know about you, but it definitely feels like I had a life before cancer and a different life after.

    I've found that the worrying does decrease with time although I'm sure it never goes away completely.

    Try and concentrate on the fab holiday you are going to have with your daughter.

    Debbie

  • Nic, heart goes out to you. We all love our kids. The only thing I would add is that if your mouth has assumed  new shape then tooth rubbing is a logical outcome! Everything crossed for you. G.

  • Hi Nicola

    Just enjoy your trip to Paris and try not to worry.  Once you get back the biopsy will be done and the results will come through and an extra couple of weeks is probably not going to make much difference at all.

    I can understand your feel about the cancer cloud.  Even though there is no trace of my cancer each time I suffer even a minor infection it will be in the back of my mind that maybe it is the lymphoma returning.  Unfortunately I think this is something we all have to expect and will just be relieved when it is confirmed that it is indeed just a minor infection.

    Do let us know how you get on.

    Very best wishes.

    Gill

  • Oh Nicola I am so sorry to read about how worried you are at the moment.  Seems all the more unfair that this should crop up just as you are preparing for your long-awaited and well-deserved holiday.  As we all know, trying not to worry is a very hard thing to do, but I sincerely hope you can put this to the back of your mind and have a fantastic time in Paris.   Keeping everything crossed for you, lots of love, Irene x

  • Hi Nicola,

    And another thing to remember is that the recurrence rates for oral cancer are generally much lower than those of other types of cancer. Not much comfort I know but it is something to keep in mind, along with the fact that aggravated mouth sores, ulcers and other growths are very, very common in people like us (i.e recipients of radiotherapy to the head and neck region).

    The point Gill makes about another couple of weeks not making much difference to how the thing will be dealt with, in the extremely unlikely event that it does turn out to be something naughty, is well made. Also, I think that once you are away this will go to the back of your mind (where it belongs).

    I do understand how you must feel. The world is definitely a different place for us cancer survivors.

    Have a good trip and we all want to hear how it went when you get back.

    Simon XX

  • Hi Nicola,

    Just seen your latest few posts and like the others, I was sorry to see that you've got a few worries just before your long awaited (and much deserved) trip to Disneyland.

    We all know how hard it is not to worry, but hopefully, the sight of your little girl's enjoyment and wonderment in the park, will be enough to push the worries to the back of your mind for a wee while.

    I look forward to hearing all about your trip (I'm off for my op next Friday so will be offline for a while!) but I'll be logging in asap after I'm home!

    Enjoy Paris and we'll chat soon,

    Love and hugs to you, Jo xx

  • Ah thanks Gary.

    A bit on an auspicious date, being Friday 13th, but fortunately, I'm not really superstitious . . . . so as long as there are no ladders to negotiate and no black cats ready to jump out in my path!

    I read your posts on here and on the Branchial Cyst thread and it's good to read how well you're doing!

    Hope you manage your get together in Leeds in due course!

    Take care, Jo x

  • Jo, some cultures consider this date a good omen! IM with them here! G.