I have swelling under chin and jaw. I’ve looked up lymphoedema which appears to be what it is but with 27 lymph nodes and radiotherapy to my neck, I can’t see how it will drain. Has anyone had similar and did it improve? Thank you.
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 7years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Admittedly it took quite a while for me to be seen initially, due to Covid etc, so I bought my own Hereford Collar and followed Dani’s massage video to be going on with. But there was never any question that I wouldn’t be seen by the dedicated lymphodema clinic. I share the others’ astonishment at your treatment! I hope you get it sorted - because it can get sorted.
Hi Clare. I live fairly near you. In Chichester. I am going to Southampton Maggies centre today, for the first time, to a head and neck support group that they hold once a month. I am a little nervous. I had my treatment at The Marsden. My oncologist is a Professor and he says in his experience in his working career (20 years) that lymphoedema always improves. I was recommended to a lady called Gayle in Guildford (private clinic). My consultant also recommended her. She is very good apparently. I have gone to someone much more local to me, but I still plan to go to Gayle as well when I can organise it. We all go through so much with this treatment I think your oncologist has been very unkind. I have found the lymphoedema quite difficult to deal with as it changes the way we look. I personally find all that side of this treatment/side effects, hard to deal with. All the very best
Hi Clare. It is 2-4. Once a month. A guy called Pete sort of runs it I think. I did speak to him in the phone. It’s the first time for me today. He has had head and neck cancer several years ago. It is in the Maggies centre. You probably know where that is as you are being treated at Southampton. We will have to find it this afternoon. Pete said to carry on past main hospital entrance. lizzie
Hi Clare. I have friend requested you so I think that means I can private message you???? Not sure. I am not very good with technology. You were amazing today. Good luck tomorrow. Lizzie x
I was treated at Guys with neck dissection & two base of tongue surgeries & I have lymphodema. I was shocked to find my local lymphadema clinic "isn't commissioned for head & neck" and Guys head & neck lymphadema services stopped with lockdown snd never resumed. I've started seeing a manual lymph drainage specialist and this is helping. You can get a list of practitioners in your area from the lymphadema Society.
Cancer Researxh U.K. have a head & neck lymphadema exercises video on YouTube which is really useful too.
I had my neck dissection & tongue surgery on 13 December 2021 with a second tongue surgery on 1 February. I started the MLD at the beginning of this month which was just how long it took to sort something out (having waited for an appointment for non existent NHS treatment for a month!). It was the physio who put me on to it.
