Hi
About 4 years ago I had SCC on the base of my tongue which had spread to two lymph nodes in my neck, so I had 30 x RT sessions and 6 x Chemo. I've recovered well and am getting on with life (age 62). However, in the past year, I keep getting what I can only describe as a cramp in a specific place in my neck, pretty much where the original problem presented in my lymph nodes. It can come on several times a day, usually if I have looked down, or yawned, but can even happen if I smile. I can alleviate the pain when it happens by massaging the area and it will go away after approx. 30 seconds. I have mentioned it to my ENT consultant who says that it's fibrosis which is a side effect of the radiotherapy.
I accept the explanation from the consultant, but my question on this forum is whether anyone else has had this develop, and if so does it stay at this level or does it build and get worse over time. Also do you have any other ideas over and above massaging the area when it happens ? Many thanks in advance for any replies.
Keith
I have pins and needles practically constantly on my scalp behind my ear extending down my neck on the treatment side for the same BOT SCC as yours ( no chemo though) It came on about 18 months ago. It’s always present and sometimes really intrudes. I have put this down to late onset RT effects. Fibrosis is a blanket term which may be responsible for my what I feel is a neuropathy.
Also do you have any other ideas over and above massaging the area when it happens ?
I just rub mine but if it’s truly fibrosis I would think some stretching exercises would do some good
The webinar Hazel mentions is taking place on the 10th September on Z oom. One of the speakers is Emma Hallam who created the UKs first late effects clinic specifically for head and neck cancer
Here is a link to Oracle’s webinar website
https://oracleheadneckcanceruk.beaconforms.com/form/20517608
where you will find a form to register but shape yourself as registration is closing soon
Ince you register you can post a question. The event is being recorded so you don’t actually have to be there to get an answer if you can’t make it.
The red light Hazel mentions is called Photobiomodulation and whereas Thor’s machine is generally designed for hospital use and is expensive I know Emma has trialled some home use ones. Another question worth asking.
Hope this helps
