Tongue cancer

Hi Night, I can't give you any info on tongue cancer or immunotherapy, however there are many on here who can, and no doubt will. All I can say is you are not alone, we are all here to help, so ask any questions you have someone will always answer if they can. Stick with us.

Ray.

Thank you Ray

Hi Night, 

I have had a part of my tongue removed and a neck dissection to remove lymph nodes. I am currently going through radiotherapy. Unfortunately I can’t help with immunotherapy, but I can regarding the surgery. What would you like to know?

Hi Ducklings

Am just so worried about the surgery, said they would take a skin graft from my arm to rebuild tongue and I will be intensive care for a few days. Worried that I won't be able to eat or speak again. And how much pain I will be in

I had 6 weeks of radiotherapy and 2 high doses of chemotherapy. I had a feeding tube also fitted. This was first time I had tongue cancer. They said can't have anymore radiotherapy 

Hi Night. My brother had an op to remove a very large tumour in his tongue and replace it with a graft from his arm. It was a very serious operation but he was starting to talk and eat before he even left hospital. Took quite a few months but eating/talking got back to near normal.

Best of luck with your surgery. 

Hi, 

I was told that I would possibly need a skin graft however when they did the surgery they decided I didn’t need one. 
I am not going to lie. It is tough after the surgery swallowing and talking was difficult but by about day 3 after surgery things did start to improve. 
I had my surgery about 6 weeks ago now and I am still on soft food. My mouth does feel strange with part of my tongue missing but you do kind of get used to it.
I completely understand how you feel and how scary it is but trust me you will get through it. I find it hard to pronounce certain words and by the end of the day I am fed up of talking. It surprising how much energy it takes to talk. 
Most of my pain came from my neck dissection as the tongue felt so numb, however just remember they will give you pain relief when you need it. I couldn’t fault the care I had in hospital. 
Honestly, I know it is hard but please try and keep your chin up. I know our stories and journeys are all different but I will try to help regarding your tongue surgery if I can because I honestly know how you feel

Hi 

Thank you so much I can't tell you enough how much I appreciate it. Am still getting over the treatment last year radiotheraphy and chemotherapy that was really hard

Am working but getting these waves of fear coming over me. It's horrible. So how much tongue did they take. What stage were you. 

Sorry I've heard so many horrid stories 

Your welcome. I am happy to share if it is going to help you. 
I am currently going through radiotherapy only on day 2 and disliking it already. 
It is understandable to be fearful, it’s the unknown. You will get through it. You have been through so much already. You have got this. 
They took about a third of my tongue to the right side. My cancer was T2. 

Try to stay of Google. I know it is easier said than done.

Oh am so sorry you going through radiotheraphy and here is me asking you so many questions am so sorry.

Yes I got through that and it was hard but I was back at work 2 months later. I lost 2 stone but have put that back on. Have you got a peg tube?. I don't understand them giving me that first to be honest.

Is a third a lot, yes your right Google is what has scared me so much. You will get through radiotheraphy 

Bless you, you have been through a lot yourself. Thank you appreciate your time. 

We are all going through a lot. Don’t worry it’s fine. I don’t mind you asking. I have always said to my family and friends I want to be able to help people since having this awful thing. 
I am 33 and feel like it has taken so much already. 
No I don’t have a peg yet hoping I won’t need one, but will see how it goes. 
Please feel free to message and ask anytime.