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

Parents
  • Hi Nicola

    I just thought i would drop you a line as I have been chatting to simon who appears to have gone through the same thing i am now facing

    At present I have a secondary site in my lymph node on the right hand side of my neck ... they can not find a prime site I have had multiple cameras and tubes doen my throught had a ct scan and a PET CT scan and no primary site found ... I am now going into Addenbrookes on monday for multiple biopsies from the back of the toung throat and a scape of the tonsil area (although i had them out when i was 8) before they assess my treatment plan

    At present i have been told that they seeno need to operate and think the lump can be dealt with ... via the 6 week of chemo and radio therapy ... so you appearto have had it a lot worse than myself

    I know what i have and accept it and like where Simon was i just want to get on with it and reading your and Simons posts has given me a flavour of whats ahead ... i know its different for everyone

    Im just trying to get a perspective on what i am now facing and how long im going to feek crap for as i have a business to run and am trying to put in steps to limit the impact of my absenses

    regards

    Gary

  • Hello everybody,

    Sounds as if everyone is doing well especially Gary. Have you finished treatment now? How are you feeling? Sounds as if you have coped well, how was the cookie? There was no way I could have eaten a cookie at this stage with a frazzled tongue! As for being bunged up, Laxido was what I was prescribed, it seemed to help. Strangely I've still got them as well as some other meds, I feel weird about throwing them away but I'm not sure why I'm keeping them, kind of a safety net I suppose. Keep me updated with the Leeds meet up, I love Leeds. I will try and make it if I can. You sound as though you have escaped the phlegm issue, I still get a sticky mouth first thing in the morning but the phlegm problem settled down a few weeks after treatment.

    Simon, I've noticed an improvement with food too. I eat three meals a day most days now which helps the fatigue. Pleased to hear you say you have days when you feel like you've never had cancer, I look forward to that. I'm still waiting for my peg to come out, I have a tongue check up next week and I'll be making my disappointment known, I just want it out now. The referral should have been done almost eight weeks ago so it's time to make a bit of fuss I think! I'll be glad to be rid of it however every time something comes to an end and its another step closer to being normal again I get a little wobbly. I suppose like you were saying, it's all been a safety net and when it was time to have my PICC line out or stop meds etc I felt a bit shaky. Sounds as if you are back into the swing of life which is great, I hope you get the help you need with the night sweats.

    Irene, sweet potato chips are a great idea! I will try that. I find regular chips too dry too and I can't have ketchup as it stings but I did try chips and mayo but again was still too dry. I add caramel syrup to my coffee and a big spoonful of sugar, otherwise I can't taste the coffee alone. The worst times are in the evenings when I fancy picking at something nice to eat. I used to have chocolate or cakes/biscuits, now it's rice pudding with a dollop of jam but it all takes so much more effort! Sorry to hear about the episode of blood, perhaps something was a little harsh on your throat which made it bleed. I know my throat is still ever so raw and wounded. If feels as if someone with long nails has scratched down the inside of my throat and the same areas seem to sting most when I get brave and try something a little spicey. It was also very sore when I had a bit of a cold and cough recently.

    Gary, I'm sorry to hear of the position you find yourself in because of cancer. None of the treatment is pleasant but it is manageable. It does get depressing at times especially if you are unable to eat but you just have to keep reminding yourself that it won't be like that forever, only three months ago I couldn't ever imagine eating normally again but I'm already tucking into meals. In terms of time off of work etc, I didn't work at all throughout my treatment but that was due to the major operation I had a couple of months before my treatment started and I was told to expect a minimum of four months of recovery time from the surgery alone. However I did meet another person having the same treatment as me and he managed to continue working through most of the six weeks, I believe his job was partly physical. I would suggest putting steps in place to ensure you don't have to work and if you can then its a bonus. You never know how you'll feel from one day to the next and it can be quite exhausting. I know I couldn't have thought about working when it was happening for me, I struggled for three to four days following the chemo each week but everyone is different. Also, try to remember that the recovery for a few weeks afterwards is when you will also need to rest. It all sounds like such a lot to think about in the beginning but as long as you have help and support, it's only a short time of your life that will be disrupted. You'll be back at work and back to normal before you know it! I hope all goes well on Monday, let us know how you get on and please feel free to ask any questions. I'll be thinking of you.

    Speak again soon,

    Nicola xx

  • Hi Roz Dog, Lovely to hear you are doing ok. Have you had pathology results yet? Has the swelling on your tongue gone down? How are you finding eating? Like Debbie says, the coating on your tongue is probably thrush. I hope your recovery is going to plan. How is everyone else doing? I've had a wobbly start back a work, I've found it hard but I'm getting there and gradually increasing my hours each week. The thing I'm finding hardest is other people's lack of understanding. It's not their fault, but I always feel like I have to justify what I've been through and how it's made me feel. Fatigue is still a major issue, I feel physically ill after a day at work, the same ill/tired feeling I used to get when having my treatment, but hopefully it will get better. I'm still here though and I'm still thankful for that everyday. Simon, it must be a year for you now that you've been in remission. I remember you letting everyone know on here and I read it as I was on my way to radiotherapy, which for me was exactly a year ago. Irene, any update on the scan? Have you had a chance to ask about having a scan? My thoughts have been with Access and his family. It's so sad that he was so strong and fought his cancer the first time only to have been caught out a second time. His thread will be missed on here, lets hope his positivity can carry on through us. Speak soon everyone, Nicola xx
  • Just a couple of questions about this new site...anyone know if there is a quick way of skipping to the latest post on a thread? Some threads are pages and pages long now (like this one) and I wandered if there is an easier way if reading the most recent page without skipping through them all using the page numbers. Also, my paragraphs aren't showing when I post a reply, it's all in one big block of text. Very annoying!
  • Hi Nicola, To get to the latest post on a thread - the start of the thread is in a grey box at the top and at the bottom of that post it says Last Reply and the name of the person and the time of the last post. If you click on the time, it should take you to the latest post. As for paragraphs, I'm a member of that club too! It's something that's being looked into though! Hope you're ok? Will catch up with you soon, hugs, Jo xx
  • hardly intuitive.

    Answer to below

    Its not obvious how to navigate the system.

  • Not sure what you're meaning.
  •  

    Jo  ..... Where has your glam avatar gone? x

  • Nicola,

     

    I've had similar issues with paragraphs.

     

    Make sure you're not holding down the shift key when you hit return and you should get a paragraph space. 

     

    Like this one lol

     

    Cheers

    Dave

  • Ah Colin, I see now. So true. It's been trial and error for me, though I did take part in an online interrview with the forum designers last week and they gave me some helpful hints ( like how to get to latest posts) But I agree, this new style format is less easy to navigate! Dave, am going to try your hint for creating paragraphs - let's see what happens when I hit post! Max, have gone back to anonymity! Haha! x
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    Aaaaahhhh - too much fan mail to cope with I suspect haha!  Speak soon x

  • God the cancer forum is turning in to a computer class lol only joking folks How are you all ... good, getting better or not too bad i hope I am on the up, well been doing better than i have and i can see and feel improvement, but i understand there is a way to go yet. Loving my new svelt 3 stone less figure but losing that weight also took all my muscle with it too and i find that i can't walk around town for more than an hours before my back starts tensing up and cramping ... that what 4 months practically laying on you back and doing nothing ... but trying to get well ... does for you is suppose like the thread in here i still get oral thrush even though i use a billion solutions daily ... that saliva stuff is magical ... what. Nicola hows work ... i found it very tiring ... mentally it knackered me out but after finishing treatment on 15th Aug i have now just done my first full week at work ... 3 months on ... and it kills me by the time i get to friday ... but i don't have the luxury of not doing it .. got to earn the pennies so how are we all i have not heard form Guzzle and Simon recently so hope all is well there I am slowly getting used to this site, but only because i don't want to lose contact with the great friends i have now made on here chin chin all
Reply
  • God the cancer forum is turning in to a computer class lol only joking folks How are you all ... good, getting better or not too bad i hope I am on the up, well been doing better than i have and i can see and feel improvement, but i understand there is a way to go yet. Loving my new svelt 3 stone less figure but losing that weight also took all my muscle with it too and i find that i can't walk around town for more than an hours before my back starts tensing up and cramping ... that what 4 months practically laying on you back and doing nothing ... but trying to get well ... does for you is suppose like the thread in here i still get oral thrush even though i use a billion solutions daily ... that saliva stuff is magical ... what. Nicola hows work ... i found it very tiring ... mentally it knackered me out but after finishing treatment on 15th Aug i have now just done my first full week at work ... 3 months on ... and it kills me by the time i get to friday ... but i don't have the luxury of not doing it .. got to earn the pennies so how are we all i have not heard form Guzzle and Simon recently so hope all is well there I am slowly getting used to this site, but only because i don't want to lose contact with the great friends i have now made on here chin chin all
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