Hi Water Beatle,

I was diagnosed with SCC three and a half years ago and like your husband, I had half of my tongue removed and a neck dissection to remove lymph nodes. My tongue was reconstructed using muscle from my arm and then a skin graft from my tummy to repair my arm. It was a huge operation and I was in hospital for about two weeks. 

Advice I can offer is perhaps to expect your husbands speech to be affected at first, mine was pretty good when I came round but a bit 'clumsy' although almost perfect now. You could  take him a mini white board and pens to communicate if he needs it. 

When he able to start eating and drinking via mouth again he will probably get help from a speech therapist as I did to explain how to tilt his head and swallow and be given some mouth exercises to do. I was only allowed to have soups then progress onto very soft foods at first. I'd say it took me a good nine months to become comfortable with eating again but over a year to become confident with it. There's still a lot I wouldn't or can't eat now such as curry, very dry foods such as cake and cheese but you find ways to adapt foods to make them suitable such as some warm custard on sponge cake to help it go down easier or add jam to rice pudding rather than having a doughnut for example. Although everyone is different and my eating habits changed mainly due to the radiotherapy.

When he is out of hospital it will probably be a long recovery so ensure he gets to rest and ensure he stays on top of his pain meds. Don't wait for him to feel pain before taking the meds, just keep up the routine of taking them every few hours. 

He will be fine. A year from now all will be back to normal and you'll both be living life to the full again. 

I wish you the best of luck. It was the biggest and scariest thing I have ever faced but now it all feels surreal!! 

Feel free to ask ask other questions.

Nicola

Hi Nicola

What stage were you diagnosed in? And were u able to eat during or before the process

Thank you 

Kindly let me know as it's v helpful to read all in the process

Hi 

Why do they say it's a lost cause? How is he doing

Hi

Well done you! I'm a tongue cancer survivor too, it's 3 1/2 years for me too and like you I've been through all the treatment etc. I had a neck dissection as they felt as the tumour was bigger than they would have liked ( 9mm) I was at  a high risk of lymph. node involement later ( nothing on the scan though) I had 72 nodes removed and once put under the microscope 7 of them had cancer cells( microscopic) not seen on the MRI. I was lucky they did the op!  I can't believe that doctors talk about loss causes and no hope when there is hope. So many people on this forum have told a similar story about their diagnosis and  will die soon, but they have survived and now enjoying life! Some doctors are too quick to give out bad news before the treatment has even begun. If the nodes are still in tact then it's still very treatable.

like you I have tolerable side effects including the dreaded neck cramps but I am now having Botox injections every 6 months which really helps, so maybe give that a try, it's not painful to have either.

take care 

Carol

My mother is suffering from Tongue scc. Stage T4a. Will this be cured permanently

She is on weekly chemo of paclitaxin and carboplatin.

Btw how are you now?

What about remission and recurrence?

Hi badgolfer, I had the same diagnosis 11 years ago. the options were a six an half hour op or go home with a supply of morphine. He said I would not be able to talk or eat. I can't eat and my speech leaves a lot to be desired, but I still manage golf, angling and driving my sports car. Life is good and I have enjoyed every minute and hope enjoy a few more years. I am 82 and in not bad shape. I cannot understand when you may have no choice. Colin

Hi Colin, Thank you for the reply. So, did you go through with the operation? I wasn't completely sure from your message. The operation they say I should have lasts 10 hours and will remove most of my tongue and the lymph nodes on both sides of my neck. Then they want to follow up with radiation. I have another clinic that is offering Chemo/Radiation at the same time without surgery. I'm just wondering about the sucess rate on that approach. I'm looking for any good alternatives. I don't want to go without a  tongue. Thanks again.