Welcome to Cancer Chat Lee although I'm sorry about your diagnosis.

I've had a look through the forum and found that [@Elen]‍ and [@Joanne81]‍ have also had squamous cell and [@Ruth_c]‍ has contended with tongue cancer so hopefully they'll be along soon to offer their support and advice.

Our cancer nurses are also available on 0808 800 4040 if you'd like to have a chat with them about this as well. Their phone lines are open Monday - Friday between 9a.m - 5p.m.

Kind regards,

Steph, Cancer Chat Moderator

Hi Lee, 

sorry you've found yourself here. I can try to answer questions you might have just like I'm sure there's plenty more here probably could to x

Hi lee, I was diagnosed with tongue cancer in july 2018. I was terrified just like you probably are now. Do not worry, you are in the wonderful hands of our nhs. Ihad my op on 8th August and was amazed at how quickly I recovered. Eating was a problem for a few weeks but I lived on yogurt, smooth soups, macaroni cheese. Things that slip down easily. My tongue is a bit misshapen but I can speak as well as before and I'm alive and well too. 

I assure you that wherever you are in the uk you will not get better treatment than the nhs. I can't thank them enough.

Good luck.

Elen.

This message means the world to me, was yours on the back of your tongue ? Mine is , I have a pain in my neck ( stiff neck ) like whiplash, I'm terrified 

Thank you for replying, say if it's spread, what happens now, I read the life expectancies is 17 months to 5 years, I worry for my wife and two children, the hospital just gave me a compliment slip and sent me packing saying someone will be in touch within 14 days 

To be honest Lee, I never thought or asked about outcomes. All I was concerned about was what happening now and what I needed to do to beat it. Have they told you what stage you're at or anything about what will happen next?
I was diagnosed in April 2016. My tumour was under my tongue and had soread to one of the lymph nodes in my neck. I had surgery to remove the cancer and reconstruct my tongue as well as having a neck dissection where they removed a lot of lymph glands before starting radiotherapy. In my case they decided I didn't need chemo.  When I was diagnosed I was also given a key worker nurse who was my pint of contact if I needed anything or had questions. It's hard to say what will happen next as each case is so individual. I would say if you are worried try try to see if you can contact someone. They're are a few nurse supported helplines or maybe speak to your GP especially if you are struggling to control pain. I was very reluctant to take pain relief at the time until my doctor insisted and I was glad I did. 

Thank you for guiding me it means a lot 

Mine was on the side and towards the back It was t1 n0. Do you know what stage yours is? Tongue and neck cancer treatment has come a long way and my surgeon said is one of the most cureable. I was told that I  might have to have a partial neck disection but I didn't need one and I was home the same day. The waiting is the most  awful time because you don't know what to expect. After my op I saw my surgeon every eight weeks till August this year. Now I will see him 3 times between now and August 2020 then once until I am signed off. All I can say is that you are in the very best hands just trust the nhs . Have you had ct and mri scans yet?

I know it's no good saying don't worry but don't

Are you in the uk, I've just assumed you are?

Elen.

That message has just made me feed a lot better, having scans Monday, a surgeon took it off three weeks ago thinking it wasn't cancer, the report came back saying the whole thing was 3cm, guess they may go back in and do if again do the margins are correct,my neck is hurting like wip lash which is worrying me and my face is itchy too ?? 

Mine was 2.5 cm and it was touch and go whether to take some nodes out but Lee, even if they have to do a disection it's all for the good isn't it? As long as they get rid of the cancer and you can carry on with life then that's what has to be done.

I meant to say to you earlier, stay away from Dr google. It's not accurate and it will frighten you. Nothing that happenned to me was anything like google said.

When I first posted on here I had areply from RadioactiveRaz aka Hazel. She had tonsil cancer and was being treated at the same time as me. You can google her blog from day one to now and although her treatment was gruelling she has come through it.

An amazing inspiring woman. This was not tongue cancer but is helpful. She is also good to talk to.

I didn't have a sore neck but if it would save my life they could have had all my lymph nodes!

Don't worry too much , you will come through. I didn't think I would but here I am. 

Elaine. X