Lymphoedema

Hi Andy,

Just finished treatment myself September and have the Turkey neck syndrome!

Spoke to my Macmillan team regards this recently and assured it will decrease, feel it has gone slightly, try and massage when I remember, other than that they are going to arrange for me to see some one after Christmas regards exercises to massage it

I'd be happy if I could grow a beard but think those days are gone with the radiotherapy, funnily enough could grow a handlebar moustache tho !

Good luck !

Hi Andy

I’m 10 months on from radio to both sides of the neck though mostly on one side. My Lymphaedema started just after radio finished. I got into massaging it every time I remembered. There are exercises on YouTube. I simply placed my right palm under my neck and swept gently but firmly up to behind my left ear and vice versa. I did fifty reps on each side maybe seven or eight times a day. 10 months on its completely gone. Sometimes it feels a little tight and I just massage for a day or so. 
hope this helps. 

Thanks for your reply Martin, i think i will raise this with my nurse specialist and see if she can arrange something similar,  Its a relief to even know this is a normal occurrence,  When i raised it with my ENT consultant he just brushed it to the side and told me not to worry about it, Little did he know that having kn knowledge of what that swelling was, was the worse thing ever and i couldn't just not worry!!! I sometimes wonder if these consultants forget that we dont know what they know!!  

Thanks for your reply Beesuit,  You have no idea how much of a relief it is to find out that this is a normal thing and that it can be managed. I have been worried sick since i first got it after my radio therapy, I haven't been given any explanations from my health care professionals which i am now a tad annoyed about as its an easy explain!  I shall start doing some gentle massage and see how it goes, did you use any kind of oil to lessen friction?  Thank you.

No oil. The idea is to just apply a little pressure so you don’t get much resistance. It’s a real shame you haven’t been given any advice on this. While Lymphaedema is not life threatening it’s just another thing we have to put up with and let’s face it they all add up. 
You should be able to get a referral to a Lymphaedema clinic through your nurse support team. 
PS the aim is to move the fluid towards lymph nodes you know are working. 

Hi Andy. As the others have said, lymphoedema is a very common side-effect of radio to the neck. I mean really common - even my (slightly useless) team had it on their list of effects. But, despite how common it is, it seems Many units treat it with indifference. I would suggest you firmly request a referral to the nearest Lymphoedema specialist -often its specially trained nurses at local hospice. There are several facets to treatment of Lymphoedema to ensure that it goes `away and doesn’t progress. I understand that severe Lymphoedema can lead to quite serious problems - it shouldn’t be left untreated. I was given advice on appropriate creams to use regularly, exercises to do and the lymphatic massage which is a bit technical to start with. 

Healthcare shouldn’t be a lottery, and support if you have Lymphoedema should be automatic. Most importantly patients need to aware of it so they don’t angst that it is a return of the cancer. Information is power, but we are frequently not given enough information to help us manage common issues like Lymphoedema!

Rant over - please ask for a referral, even if your GP has to do it. And good luck. With appropriate treatment Lymphoedema usually entirely resolves - I was rigorous in doing the treatment regime and my turkey neck was gone within 3 months.

Good luck

Hilary

Sometimes you get Lymphoedema inside too. For the first month or two after my treatment finished my voice was absolute rubbish till lunchtime by which time I’d got a fair amount of fluid down me and done a lot of swallowing exercises. It took me a while to figure out what was happening 

Ahhh this makes sense then! Ive been trying to figure out why i cant swallow foods in the morning that i can manage later in the day! Been getting mega frustrated my ability to eat changing so much! One days lunch is the next days bin filler!!!  Reading these forums has helped me so much to understand my condition. Thanks to all.

Swallowing exercises are key. There are a few that are easy to do. Stick your tongue in between your teeth and swallow. Swallow hard sort of stopping mid swallow. These are the two easiest to do..... if that makes sense. 

Hi Andy well done in completing treatment and well on road to recovery. I am now 15 month post radiotherapy  luckily  lymphadenitis wasn’t one  if my symptoms but know Leeds cancer centre has a lympoedema clinic ,so please ask for a referral at yiur hospital ,it really is a post code lottery, there’s no continuity of care although we are all n h s there are vast differences in consultant care. 

Glad you have  found some peace of mind the forums do really help .theres nothing like first hand experiences.

Hazel aka RadioactiveRaz