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 Gary,

    Munich should be good. I worked there for a year in the late 90's. The market at Marianplatz (probably misspelt)

    was very good. In the winter you could get a glass of hot mead. I found the people to be very friendly.

    If you do come over next year you are welcome to visit. The weather is often similar to southern England although

    some years it can be, say 5 degrees warmer.  I don't remember problems with the heat when I had my rt and it

    was in July and August of 07.

    I worked for a few weeks at the Fords Halewood plant when it first opened in the early 60's.  I remember the

    Pink Parrot nightclub (seedy) and the Mecca ballroom.

    Simon,  Pleased things seem to be improving for you. If your jawbone selfheals that be will be a bonus.

    They removed part of mine in case it was infected.

    Rgards

    Colin

  • Colin  pink parrot still a bar! But Liverpool changed a lot. I will show you around if you visit. Only been to Bavaria in summer so Xmas looks good for markets. You travelled a bit with work! G.

  • Hi all,

    Thanks for everyone's replies.

    Simon, glad to hear that the jaw bone issue is resolving itself, I think this is the condition I was warned about when I was advised to have my teeth extracted before radiotherapy. How is it resolving itself? Good to know you still suffered with fatigue at this stage too, Debbie too (good as in that's comforting to know) as I was beginning to feel like I'll never get back to my old self. I arranged to see my head and neck nurse this week as I'm really struggling with the fatigue and my emotions after all that's happened. She was very reassuring and told me that four months post treatment is too soon to be thinking about not yet being back to normal. I have been signed off of work for another two months and my GP thinks I may need more time afterwards. Also pleased to hear that the night sweats have become less frequent, I really do hope you have turned a corner with those as I can imagine they are very frustrating for you.

    Guzzle, off to Paris next month, although five days in euro disney is going to be difficult what with this fatigue issue. Had I of known I'd still be suffering I think I would have delayed the trip but too late now. I read macmillan's book on fatigue and it described me perfectly. Now I don't feel so daft. As the others have said, I'm sure you'll be ok come christmas time. You'll be further down the line in terms of recovery than I am now and I think it does us good to have something to look forward to. As my head and neck nurse said "if we don't deserve a holiday after all that we've been through then she doesn't know who does"!! Keep going with the treatment, week three was a turning point for me, side effects began to become more noticeable. Eat as much as you can this week!

    Irene, good to hear from you and a massive well done for coping with so much recently as well as returning to work. You're superwoman!! I don't know how you've done it. I will update you on the removal of my peg, I'm currently waiting on an appointment to have it removed but looks like I've been forgotten! I hear they do pull it out or they cut it and leave the inner bit to be passed. Not sure which I'd prefer?! I'm dreading it though after the problems I had with it from the start. Sounds like you're finding your feet with eating again, it's so daunting isn't it. I feel I've reached a point that I know what I can comfortably eat.

    I'm having a restful weekend and saving all of my energy for a couple of days time. It's my daughters third birthday on Tuesday and she's having a party on Monday. Seventeen kids, food and a soft play is going to take all of my energy so I'm going to keep some in reserve and try and put my feet up a bit tomorrow! Enjoy your bank holiday weekend everyone.

    Speak soon,

    Nicola xx

  • Nicola 17 littluns would tire any body! Just think you have a month more to recover for e Disney and its a holiday. You can take a break when you need one. Are you going unto Paris? I feel fine end week 2 but have been warned week 3 can be a grueller so not complacent! If your hotel has wi fi send us all an e post card! You'll have a great time. G.

  • Hi Nicola,

    It's official. My fatigue is well under control - I occasionally get a bit tired late in the afternoon but it really isn't a problem. This bodes well for your trip, Nicola, as you are just a few weeks behind me. Everyone is of course different but many of our experiences have been very similar. The 17 children might be a bit of a challenge though - can you enlist some support from the other parents or are they going to drop them off and run for the hills?

    The jaw bone issue is good - the consultant had a good poke around and said that I had done his job for him. I snapped off the exposed dead bone (sounds a bit extreme I know but I poked at it with my fingernail and it snapped off). It was about the size of a very small pea. It was painful at first but the pain has now gone. The consultant said that pink tissue has now begun to grow over the exposed bone and that it would not do so if the bone was dead, therefore he was fairly confident that the dead bone has been removed and things should resolve over time.

    Good luck for the party and look forward to your trip.

    Simon XX

  • Simon. So pleased for you mate. Ive just had a zap to start week 3. Can feel slight sore throat coming in the side ive been getting zapped but was out on bike this morning. Got co codemol on hand for pain when it comes. Glad your energy levels on way up.

    Regards   G.

  • Good luck Guzzle,

    It was at about the stage that you are at now that things started to get a bit tricky for me.

    Be prepared to:

    1. Ask for stronger pain relief if the need arises (I found that Oramorph was the Rolls Royce of painkillers - everything else was a Ford Cortina in comparison).

    2. Ask for a PEG tube if swallowing gets very problematic.

    Hopefully you won't need either of the above but be prepared to ask / demand if necessary.

    Simon.

  • Simon week three seems to be the one if you follow the consensus! I wont be shy about painkillers but got some co codemol stocked for starters! Does the rolls royce stuff make you groggy? Not really big on pain killers but realize they  will be essential. Just don't want to be a zombie - at least any more than usual! My Dr. Seems not to be for the peg but if she advises I will do whatever she says to get through. She says if it comes to it she will use nasal tube. What worries me there is in Clatterbridge this means staying in which I just don't fancy one bit. They are keeping me in for my 3 chemo days. Done one overnight and whilst the facility is excellent I just didn't like it. So being stuck in for days / weeks with a tube up.my hooter does not sound like fun! Are you using light excercise to increase energy? And how many beers have you achieved now that you are back in training!

    Regards,G.

  • Hi guzzle

    I agree with Simon that oramorph is the best painkiller (as it's morphine!) but I suffered horrendous constipation with it so I'd try to delay taking it for as long as you can!

    Happy days!!

    Debbie

  • Hi  All,

    This pain at 3 weeks seems strange to me. I suffered no real pain for the duration of the 7 weeks. I had chemo on Fridays as well.

    Perhaps I am just insensitive. Has anyone else been without pain?  The consultant told me I would feel discomfort but no real pian, and

    so it proved. After the Op. they gave me morphine but it caused me to have hallucinations, so I asked them to stop. The only

    problem I had was nightmares in the week or so following the Op. which made me afraid to go to sleep. 

    They did remove rather a lot of the internals of my throat so perhaps there was not much left to hurt.

    The only discomfort I had was in my bum from being in a semi reclining position for three weeks.

    Colin