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Re: I am a stage 4 tongue cancer survivor

21 Feb 2017 11:42 in response to Kurzc1
Hi Craig, Sorry to hear of what your news. It's a scary time but try to stay positive, the treatment is not pleasant but it's manageable. I had six weeks of daily radio (except weekends) and weekly Chemo at the same time. This all happened after my tongue surgery. I was pretty sore in and around my mouth, my neck, side of my face and back of my head. I lost about half of my hair due to the radio and I now always feel tender around those areas but nothing too bad. Are you having a PEG? The feeding tube in your stomach? I did as there was no way I could pass any food or drink via my mouth so that was a lifesaver for me. Tips that I can think of...make sure they give you anti sickness meds to go home with after Chemo so you can dose yourself up as you need it. Try and have someone sit with you as Chemo gets very boring! And wear layers and take gloves or maybe a blanket as I remember feeling very cold. If your not having a peg, stick with easy foods such as scrambled eggs, omelettes, soups, custard, rice pudding, not sure if your eating will be affected but those types of foods are easy to swallow. Keep your calories up, as you may lose weight. And the best tip of all....don't be afraid to tell your nurse/carer when you're suffering. They genuinely did everything they could for me to keep me comfortable as they really do understand that it's such an unpleasant thing to go through. My radiotherapy was aimed in several places so mine took around 15 minutes each day. I led on a hard bed/table with a mask over my face and neck. I could hear the radiotherapy zapping at me but didn't feel anything at the time. The affects are gradual and you feel them afterwards. I had a mask. I did have a problem with coughing up a lot of mucus for a few weeks but it settled down. Just try and get plenty of rest too as it can zap your energy. You will have several blood tests along the way so a PICC line is a good option as it can be used for blood tests and to plug your Chemo into each time to save you feeling like a pin cushion! I wish you the best of luck. Any other questions you have then feel free to ask. You really will get through all of this and now that I'm three years on it sometimes feels as though it was a lifetime ago. Speak soon, Nicola

Re: I am a stage 4 tongue cancer survivor

21 Feb 2017 11:58 in response to water_beatle

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.


Re: I am a stage 4 tongue cancer survivor

7 Jul 2017 08:15 in response to Moderator Jane
Hi, my brother is suffering from tongue cancer, he was a chain smoker, Dr. Said that it's a lost case and he will b living only for 1 & half years that too will be very painful. Right now radiation is going on. He needs 35 radiations(regular) nd chemos once a week. We are totally lost now. His weight has reduced, does not want to eat anything. We don't know what is there in fate for us

Re: I am a stage 4 tongue cancer survivor

11 Sep 2017 19:10 in response to Nicola2209

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

Re: I am a stage 4 tongue cancer survivor

11 Sep 2017 19:11 in response to Nafi


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


Re: I am a stage 4 tongue cancer survivor

12 Sep 2017 07:37 in response to Kjar53


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 


Re: I am a stage 4 tongue cancer survivor

3 Jan 2018 15:36 in response to Kjar53

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?

Re: I am a stage 4 tongue cancer survivor

20 Feb 2018 14:47 in response to Kjar53
Hi Kjar, I know you wrote this a long time ago but that was what happened to me I was diagnosed as having tmj and fibromyalgia - my tongue didn't turn green but it took a swollen lymph node for them to finally investigate - I'd asked my Dr if she could refer me to a Private Clinic so I could pay for an MRI a year before it was discovered but my Dr refused and told me to go out and get some more exercise ( I weighed 8 1/2 Stone), as you can imagine I am not too happy with that Dr if I had had an MRI they would have found my Tumour before it spread to my Lymph Node. I had a radical neck dissection and 6 weeks of Chemoradiation and it's a long and ****** road but I'm still here so try not to moan too much. How are you doing now? Best of health to you now and for the future. Jo x