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
  • hello nicola, first of all the most important thing is staying positive,yes there are horror stories out there but the number of people ive meet over the past 6 years with the same condition have come through it to lead a near normal life ,obviously i understand your concerns especially as you have a young daughter ,which is why i suggest not to hide your symtoms,the more people that now will be able to help you when you need it, true its going to be a rough ride the next couple of years but you can pull through this, if theres any info on what the proceedure is for the op or the possible follow up treatments after please let me know , i was stage 4 tongue and lymph in neck ,im 6 years post op and although at times its been difficult im here and doing my upmost to lead a normal life again ,you can too,please let us all know how things go all the very best x

  • Dear All

    Finding it hard to have to be posting here at all but my husband is waiting for treatment for tongue cancer, surgery at least (including some lymph node removal) and then maybe radiotherapy if he needs it. I'm focusing very much on practicalities at the moment... he's a teacher so speech is important to him, how long in your experience before he might be able to get back in the classroom? Should he be thinking after Christmas or longer (assuming things go well). What impact would radiotherapy have on his speech recovery?

    Thanks :)

  • Hi everyone I have been reading this thread all night as I'm struggling to sleep at the moment with worry. 

    I have a lump on the front left hand side of my tongue which has been there for a few months and I have been to the doctors and had my first appointment at the maxofacial in the hospital to be told they had no idea what it was and I'm booked in this Monday coming the 27th January for my biopsy. I have 4 young kids and I'm absolutely petrified of the outcome I'm not sleeping I'm snapping at people and I'm just hiding away from it all. I'm hoping and praying that it's not cancer but I kind of know deep down it is. 

    It's very reassuring to read all the positive posts on here and how so many of you are living a normal life

    I'm very anxious even about the biopsy is it as bad as I have read on some threads. 

    Thank you in advance for any response I get I didn't know else to speak to about it. 

  • It must be a worry but I’m honestly not going to say don’t worry as it’s natural , I myself just became the opposite I went out and socialised. , spent time with my family , deep down like you I had that gut feeling , I’m now 5 months on from sugery for partial tongue removal and neck dissection , won’t lie has been a long recovery , but I’m a live cancer free , my speech good , apart from stiffness in neck and shoulder as you can get post op probs when nerves getvdussruopted I’m goid , going back to work soon and very happy and I’m just saying everyday I’m going to live my life now , I do hope all goes ok and you are in my thoughts lots of love my friend xx

  • Thank you for the reply I have already accepted that it basically is cancerous so if the results come back negative it's an incredible bonus and relief. Nice to hear another positive story and really happy for you. I know what you mean about worrying I'm the biggest worrier about and I'm Dr Google as well and having the 4 little ones doesn't help as keep thinking what if this is worse than I think and I don't get to see them grow up

  • My pleasure , i have 2 small grandchildren , it’s so hard lots of emations go through your mind , I have a dissabled  son to who was worrying before my cancer diagnosis  about  me not being here , but all I can say is keep moving forward , I hate the word positive because how can you be , all I can say is speaking to cancer sufferers on here made me realise we not on our own and never will be , and there is far worse out there , keep going take  things day to day .

  • Thank you so much I'm dreading the biopsy on Monday I read somewhere it's very sore. Will keep posting and update after Monday I'm hoping the support on here will help me though this 

  • Hi 

    First advise keep off dr google please   I am 17 month post radiotherapy for tonsil cancer and living my life cancer free . Don’t pre empt anything biopsies are done to rule out cancer just as much if not more than rule in. 

    Enjoy your 4 kids this weekend try and put biopsy to back of mind you can’t worry about something u have no control over .

    Hazel xx

  • Thanks Hazel I guess I'm just trying to prepare for the worst and anything else is a bonus. Lovely news to hear your cancer free. 

    I'm only 35 and all my wee ones are all still young I guess that's where my worry comes from as my kids are my life I do everything and anything for them and I suppose I worry what if I can't anymore but yeah like you say I can't control what happens so just need to have the biopsy and take it from there. Thank you xx

  • No problem, please come back when you get results and if there is cancer cells it’s no longer the death sentence that head n neck cancer was even 10 years ago . Breathe deep you can do it  

    hazel d

  • I will definitely come back when I have my results.

    Thank you x

  • Hi Jamie

    Sorry to hear you’re worried, fingers crossed it will be nothing. The biopsy is sore but not too bad.

    i know what you mean about worrying about not seeing your children grow up - my baby was only 7 months when I was diagnosed last May. I’m 39.

    I’m doing pretty well now. Finished my treatment at end of August, I was back at work part time in October and full time in December, I was eating almost normally by early December too. 

    Good luck and I hope it’s nothing, but if it’s not you’ll gave it and find lots of support here. 

Reply
  • Hi Jamie

    Sorry to hear you’re worried, fingers crossed it will be nothing. The biopsy is sore but not too bad.

    i know what you mean about worrying about not seeing your children grow up - my baby was only 7 months when I was diagnosed last May. I’m 39.

    I’m doing pretty well now. Finished my treatment at end of August, I was back at work part time in October and full time in December, I was eating almost normally by early December too. 

    Good luck and I hope it’s nothing, but if it’s not you’ll gave it and find lots of support here. 

Children
  • Hi there and thanks for the reply I'm glad to hear that you are doing well and it's nice to hear. It may be nothing but I'm preparing for the worst and anything else is a huge relief. My lump is on the front left hand side of my tongue and bleeds occasionally. It's been there for a few months now. Thanks and yes already appreciating the support