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Cancer of the tongue

15 Oct 2019 20:32

Can anyone help, today iv been diagnosed with Squamous cell of the tongue, the nurse tells me the hospital will call me in a couple of weeks, iv already been waiting four weeks for my results and I now have neck pain and left groin pain, I really need the best doctor that is out there, please can anyone help me 

Cancer of the tongue

17 Oct 2019 20:59 in response to Lee_c

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

Cancer of the tongue

17 Oct 2019 21:52 in response to Moderator Steph

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

Cancer of the tongue

18 Oct 2019 06:42 in response to Lee_c

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.

 

 

Cancer of the tongue

18 Oct 2019 09:07 in response to 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 

Cancer of the tongue

18 Oct 2019 09:11 in response to Ruth_c

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 

Cancer of the tongue

18 Oct 2019 10:58 in response to Lee_c

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. 

Cancer of the tongue

18 Oct 2019 13:14 in response to Ruth_c

Thank you for guiding me it means a lot 

Cancer of the tongue

18 Oct 2019 14:31 in response to Lee_c

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.

 

 

 

Cancer of the tongue

18 Oct 2019 16:28 in response to 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 ?? 

Cancer of the tongue

18 Oct 2019 16:55 in response to Lee_c

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

 

Cancer of the tongue

18 Oct 2019 17:16 in response to Elen

Thank you so much this is calming me down so much x 

Cancer of the tongue

18 Oct 2019 17:37 in response to Lee_c

Keep in touch and let me know how you get on. Ask me anything you like rather than worry and I will help if I can.

Elen. X

Cancer of the tongue

18 Oct 2019 19:17 in response to Lee_c

Hi Lee 

This is Hazel aka RadioactiveRaz I am now 14. Month post radiotherapy for tonsil cancer with spread to several lymph nodes  and I am here living life to the full , git all clear in January was diagnosed 29 May last year .

best advise 

1 keep of dr google please everything on there unless Cancer U.K. Macmillan or personal verified blogs can scare the living daylights words from my oncologist yes word says I never thought would apply to me my oncologist!

i have a blog from day one to present day if you feel brave give it a look www.radioactiveraz.wordpress.com

remember we are all different some might apply to you some won’t. 

Next the n h s have a timetable from diagnosis to start if treatment I was 62 days seems like a long time but it’s right with the n h s guidelines okmwe all want to  be treated stfaight away butbthere are protocols to adhere to . Anither piece of asvise take someone with you to every appointment there job isn’t to write things down as I guarantee yiu your mind will turn to mush. 

Ask what your t. N is t is tumour size n is has it sorrad to lymph nodes  the nd is has it spread away to other parts highly unlikely I was a T2N2NM also I was h p v 16+ again ask if you are , it does make a difference to treatment. Although your consultant s will be aware if all these always worth asking that’s if you are. Nosy. Like me , some people don’t want the details your choices .

Try and lead as normal a life as yiu can you arecreally in the best hands our n h s really do come up to the mark as far as cancer treatment is concerned. 

If you feel happier private messaging send me a friend request 

Hazel. Love to you’re famiky as well 

Cancer of the tongue

18 Oct 2019 21:09 in response to RadioactiveRaz

Thank you so much, I get my results Wednesday, I have a pain back of my head top of my spine and a pain left side of my neck going into my head? For some reason my face itches if places strange? Any ideas, I read that you had a pain in your neck like I have but I haven't spotted any raised lumps yet,

I'll post my results next week