LYMPHOEDEMA - looks like I haven't avoided it

Hi

I am waiting for a referral to the Lymphoedema team.  I have full lymph node removal on the 13th July and a lumpectomy and had been doing ok with exercises, managing the cording etc. but in the last couple of weeks the pain on the back of my hand has spread into my fingers and I have swelling.

I still have full movement in my hand so it isn’t stopping me doing anything but just feels like it is just something else that we have to contend with - as I keep telling people, the tumours may have gone, but the side effects of chemo, surgery and radiotherapy (which I start today), linger on.

I am guessing it will be additional exercise/massage and a sleeve but wondered how other people had dealt with it.

Love LouJP

xx

Hi LouJP,

Thank you for your post.

I am sorry you haven’t had any response yet. I am hoping that my response will help our members to find it and offer their experience and advice.

Please know that for any clinical question our Nurses are here and always happy to talk.

Sending you our warmest wishes,

Zoe

Hi LouJP

Your symptoms sound similar to mine, I had mx Feb and ANC March this year and its only since I managed to fall off my bike 3 weeks ago (dur!), luckily (!!) landing on my duff side elbow that the hand has been swollen and painful, in particular when I bend the palm towards the wrist.  Noticed that when I walk a decent distance the swelling is in fingers too and swells a lot more. I’ve been massaging (well my version of) it and no improvement so far.

Anyway I wondered how you got on since?

I mentioned it to my follow up nurse at first follow up post rads last week and she suggested giving it another couple of weeks to see if it was still there, and also keeping the arm elevated too.

Sam

Hi Lou

Can I ask did you have auxiliary nodes out after main surgery? I had 3 nodes removed in mastectomy and 1 of the 3 was positive so now may have to have further surgery to take out auxiliary nodes and worried about after affects. Is this what you had done?

Are you also having chemo and radiotherapy as well?

xx