Hi all
I was diagnosed with tongue cancer feb 2012 after experiencing soreness on the side of my tongue and my dentist telling me it was a tooth problem,this lost me seven weeks in total which meant cancer was stage 2 where seven weeks earlier might have been stage 1. the surgeon removed around 5cm by 2cm near the base of my tongue then cut open my neck removed 30 nodes and a piece of muscle which he stitched on to the side of my tongue to rebuild it,I had 14 days in hospital then went home. I started to recover quite quickly put on a bit of weight and felt ok ,I had a check up after a couple of weeks and was told that all the nodes where clear and the extra flesh removed around the tumour was also clear but the doc felt radiotherapy would be advisable because he felt the tumour was quite large. Had 24 sessions altogether last one begining of july 2012,I now have movement issues with left arm I can look down look left and straight ahead but not up or right, tongue is stuck to the left side of my mouth and won't go anywhere else jaw won't go forward and I have pain in shoulder and wrist that comes and goes. I am english and live in france both my surgeon and my ent doc speak good english but the problem I find is do I have to learn to live with these problems or will they ease with time,everyone you speak to gives you a different answer as in will get better won't get better might or might not, you seem to get a lot of maybees but not many definates,the response is always everyones different and the side effects are not the same for everyone. Is there anyone else out there who has experienced similar re shoulder jaw etc and how did it go with time. Will I ever be able to eat a pizza without sticking it in the blender!

Welcome to OCF!

Sine you already have heard "everybody is different" more times than you would like I wont repeat it again. But.... it really is true. (Sorry!)

Honestly, everyone learns to adapt to all the new changes that happen after having oral cancer treatments. I would suggest a physical therapist to help with your range of motion. Maybe try someone who does speech pathology and ask if they can help with your eating problems. There are a whole range of specialists out there who could help you to make some small improvements. It takes lots of hard work and dedication but you can get your old life back and overcome some of these limitations. At least many people can so I hope this can happen for you as well. One more thing, it can take every bit of 2 years for some to make a full recovery. There is still plenty of time for improvements as you are not even 1 year past finishing your treatments.

Best wishes!

You need physio for your arm, shoulder and neck. There are exercises that you should have been given. With physio you should regain most of your function and ability to move your head naturally. I also had acupuncture which helped break up the scar tissue in my neck area. Without physio to help strengthen and stretch the muscles you will likely never regain full use of them again. This goes for the jaw as well. It was likely already tight from the surgery but then radiating it causes even more stiffness, shrinkage and damage. As for your tongue surgeons all rebuild them differently. I still have almost full use and mobility of my tongue - and almost half of mine was replaced. Maybe at some point it can be revised to un tether it. Welcome.. And congrats on getting through radiation.

Had 48 half hour sessions with physio after I finished radiotherapy things seemed to get worse not better,have now been advised to try another 20 sessions to see how it goes.

Getting worse is unusual. And the half hour sessions are just the beginning. You do the sessions but you must do them at home as well. It's a constant to retrain and heal the muscles. I had one to two physio session a week for several months but I did my exercises daily, twice often. Do be careful you are doing them correctly as you can make matters worse. Make sure your physiotherapist is certified, and knows what they are doing. take care.

Although mouth cancers are becoming more common a lot of the problem I think is lack of experience with some medical proffesionls. My physiotherapist has had no experience with a client like me before and sometimes I think it might be a case of we will try this and see how it goes. I have never been given any exercises to do at home,i try and move my arm and neck as much as possible.

Its always best to be treated by doctors who are experienced and have treated many oral cancer patients. This is cancer and is deadly. It should not be left to amateurs. I realize you have already been treated by this doctor. Going forward it would be a good plan to seek out a more experienced physician to handle your recovery and after treatment issues. I suggest you also seek out some physical therapists to help with your range of motion issues.

Hi T-rev, sorry to hear of your problems, but welcome here anyway!

I VERY STRONGLY echo the very wise ChristineB's advice about physiotherapy!

Don't delay, and stick with it.

This is one of those things that really pays off in reduced suffering, even though it sometimes is hard to see when going through the exercises.

Good luck!

T-rev, I go to physio at our cross cancer centre. I have a bunch of exercises on paper that I can scan and send to you if you want to private message me your email.

I spend 1 hour on physio every day at home (my appointments are only once every 2 weeks), and one hour at home on speech therapy every day. This has been ongoing for the past 6 months.

For about 4 and 1/2 months I couldn't lift my arms out to the sides even to 90 degress, then something clicked, and I was able to lift them over my head from one day to the next.

You have to put the work in though.