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

  • Jo,

    I'm with Guzzle on this one - Friday 13th is definitely a lucky day.....

    Simon XX

  • Good luck for Friday Jo.  Wishing you a speedy recovery.  Irene x

  • All, any followers of branchial cyst Access had some good news. Cheers, All, G

  • All , any tips for  deteriorating neck burn. Got one week review with Dr. Tomorrow and aquous cream just doesn't seem to be up to the job. Nice gentle spin on road bike today but factor 50 / neckbbuff on, regards, G

  • Hi Guzzle

    When my neck skin began to break down (very close to the end of treatment as I recall) my specialist nurse gve me a supply of wonderful sterile dressings called Mepilex Lite which you just cut to size and they were very easy to apply.  She also showed me how to sluff off the dead skin by mixing up your aqueous cream with water and using it on a scrunched up swab like soap.  I always remember I was pleasantly surprised how quickly the skin healed up (in just a few days I think) with no signs left of the burnt area.  Hope all going well with you otherwise.  Best wishes, Irene.

  • Irene, thanks for prompt response. Nurse has mentioned dressings so Ill make suggestion tomorrow. Apart from that trying not to lose weight. Had a spin on bike today. Post treatment is frustrating but too early fir return to work! I hope to make Malta in August though. How are you?

    Regards, Gary

  • Hi Gary,

    Not too long to go now and you can relax back into normal life. Enjoy the bit before you have to return to work.

    Malta is good. We went there some years ago and had a small villa in St Pauls Bay. I recall that Paradise bay

    just round the corner was good for swimming. We found the people very friendly. I hope you enjoy it as much

    as much as we did.

    Colin

  • Colin, good to he from you. Finished treatment last week avoiding tube and just had early one week check. Lost a stone or so but off painkillers pretty much. Had cumbrian sausage mash and onion gravy today which nearly finished. Gravy helped. Still taking light excercise. One week out. Doctor supirts trip so holiday insurance next which she will give me a letter fir. Cant remember conclusion we came to regarding best company so if we could refresh that debate it would be great although I have a list. Looking forward to Malta. Staying in Qawra and just been looking online. Found a place to swim with dolphins in semi wild environment which guarantees the experience!

    Regards, Gary

  • Nicola, hope you are well. There is a blog on word press by a lady called Stephanie Wigglesworth who had similair experience to you. She had an anomly on her tongue which sounds like tours which was innocent. Id recomend the radioactive man blog also  , regards. Gary

  • Hi all, lovely to read and catch up with everyone on here. I have a few good things to share....

    Got back from Paris late Sunday evening, had a blast! Was worth every penny just to see my little girls face when she met the Disney characters and princesses! We didn't get to do all we had hoped, I was too tired and it's not a restful holiday at all, lots of walking and I'm not up to it yet, but I made sure I kept my energy levels up by snacking and drank LOTS of water (it was about 25 degrees everyday, combined with walking a lot - not good when you've had radiotherapy to the mouth!) we spent the whole time at Disney, so another trip is on order so I can do some shopping and see the Eiffel Tower!

    Early yesterday morning I had a call from the hospital. They have booked me in tomorrow for my peg to come out. About bloomin time is all I can say! I opted for the sedation route, fingers crossed it goes well and no problems such as when the peg went in. Apparently the odds of a perforation to the stomach during an endoscopy is 1 in 3000. That 'one' was me when the peg went in! So I really hope all goes well tomorrow, I'm looking forward to being peg free but I have put a few of the NHS milkshakes down my tube yesterday and today whilst I still can in an attempt to gain a few calories!

    Also, two days before I went away I called my specialist head and neck nurse and asked her if it was possible to see my consultant or surgeon before I went on holiday about the ulcer on my tongue as the worry was all too much. Luckily I got an appointment for the following day with my surgeon, one of the people I trust the most. He took a look at my ulcer and decided a biopsy isn't necessary in his opinion. He said a biopsy would do more harm as my tongue wouldn't heal very well now. He thinks it's an ulcer which isn't healing very well due to what my mouth has been through, he said mouth sores won't heal in the usual way post radiotherapy to the mouth, but he will keep an eye on it. He also offered to see me more regularly at his clinic rather than me having the usual monthly check ups at the dental clinic as he could see I was very stressed! He said they are there to cure ''me" rather than just cure my tongue. So no biopsy tomorrow and I was able to enjoy my holiday without worrying!

    Gary, glad to hear you are doing so well. Thanks for the reading suggestion, I will take a look at those. Also, Insurewith is a travel insurance company that someone on here suggested a little while ago. Apparently their quotes were very good according to Hannahman.

    I hope all went well for Jo on Friday, I'll be looking out for an update for her.

    Simon, I can't believe it's almost been a year for you since all this began, I read all of your very good advice to Gary (Vatch) on his thread, I will also respond to him. Hope all is going well for you, it must be your long awaited appointment next week?

    Gill, I hope all is going well for you at work,it must be tiring, I must admit, I'm not much looking forward to struggling with the tiredness when I return.

    Thanks all (Debbie too) for supporting me through my period of worry!

    Speak soon everyone,

    Nicola xx