Hello. I was diagnosed with tongue cancer last June (2004). I initially went to my local GP in London-UK complaining that I had an ulcer on my tongue for around 6 months. She told me my tongue was normal after looking even though I said but how can it be normal to have an ulcer for 6 months! I trusted my instincts and went and saw another doctor who said it was not normal and referred me to a specialist at the Eastman in London. They took a biopsy and said it is probably nothing as there is often changes in the tongue and it didn't look like cancer to him. Off I went on a lovely 2 week holiday to Spain and on my return went along to get the results assuming it would be nothing. I don't think I will ever get over that day and the days following waiting for the results of the MRI scan. One minute I'd look at my 15 month old daughter and think God wouldn't put give me her to then take me away, the next I would be thinking I was just meant to have her before I die - what a whirlwind.

The MRI showed that it didn't look like it was too far into my tongue but my doctor wanted to take some sample lymph nodes just in case. He said if I was 70 years old he wouldn't bother but because I was only 37 he had to make sure it had gone no further.

My operation was at the UCH in London. I had no idea they had to do such a big incision to get the nodes out. I am not sure what to think about that as since I have returned home to Australia and have had check ups the doctors say they have never seen such an incision. Apparently in Australia it is from behind the ear and then under your chin but mine is from behind my ear, down the back of my neck and then nearly all the way accross it!? I was extremely lucky and the cancer had not progressed to my nodes so the cancer was just cut out of my tongue. My speech is not quite right but pretty well back to normal.

Anyway, talking to my doctor before I left to come home (I spent 12 years in London) I asked him what the chances were of it coming back. He said most people have 1 in 60,000 of getting tongue cancer and I now have 1 in 10. I know I should be thinking 'I am that 90% and it won't' but I can't seem to get it out of my mind. I'm just wondering how I am supposed to think/feel? My doctor said it's early days yet and it's all very fresh and in time I will move on but I don't know.

Any advice would be helpful!

Hi Anna, It's still early for you. Give yourself some time to heal. It was good that you
got a second oponion. If you ever want to talk I'm here. i'm 15 years cancer free. I had chemo, and radiation and very glad I did. So there is hope at the end of the tunnel. It's still hard for me to talk about it and write about it. The site is wonderful for that so ask anything and you will get help.
Fill free to e-mail anytime WandaWlee@aol.com.
Cathy

Hello Anna, Welcome to our Wonderful Site. It is a honor to have you join our elite group of survivors. You are doing fine. It takes time to recover from this. The incision you had so many of us have had. The number one thing to remember is this----YOU WILL NEVER BE ALONE!!! We are all here for you......Day or Night....WE are here...All you have to do is just talk to us. Tell us what you are thinking. How you are feeling? That is what we are here for.....How are you feeling now? How is your wonderful daughter? You can read my story one the front page of the site. I have had CANCER 3 times now..Have had everything and anything done it seems......If I can do this,,,,so can you,,,,,Just don't give up or in.....ALways Vicki Lynn

Hi Anna
I am 15 years on from cancer of the tongue. Your story has real echoes for me. I also had surgery which involved an incision from behind my right ear down my neck as far as my collar bone, and under my chin. Like you, I had a young child, just coming up to age 2 - she is now 17 and I have been able to see her grow up.Also like you, I went to my GP and was told it was nothing. In fact, I was treated for oral thrush for 2 years before I got a proper diagnosis.I can still remember the shock and numb disbelief that followed. You say you don't know how you're meant to feel. As the others say, it is very early days although it will seem a long time to you. You will feel vulnerable for a while and it is scary wondering if it will come back. It is great that you have found this site to share your concerns. I wish I had found it sooner.