I had WLE & SNB on 4 Jan 2017. I'm on the verge of going for breast radiotherapy only, plus hormone therapy, in an attempt to avoid any lymphodoema and arm problems. But I just read that breast rads can give you arm lymphodoema; and the more I researched on lymphodoema, the more I wonder if I've already started it.
I had an episode of swelling in the surgery-side arm 22-24 days after surgery. The arm just felt different, and I couldn't tell if it was really numb so at my husband's suggestion I shut my eyes and he dabbed the back of both hands with different numbers of fingers: I got the number right every time. But later on I noticed swelling in my wrist and forearm (can't remember about the back of my hand). I was worried but put it down to overuse. The next day it was gone.There wasn't any pain with the swelling, just a feeling of the arm being puffier.
26 days post op, the arm & back of the hand were swollen again, and I talked to a nurse about it by phone (getting a breast care nurse had been a complete lash-up, really, until then). She said with only one lymph node removed it would be very rare for it to be lymphodoema, and was more likely to be the result of nerves healing after the operation.
Any opinions? I was already raising lymphodoema as something I was trying to avoid, so I wasn't going to treat the axilla even though the sentinel node was positive. I was willing to trade off the uncertainty about anything else being in the nodes, against an increased risk of lymphodoema. What the heck do I do if I've already got it?
Nobody seems interested in lymphodoema, and I haven't even found out where the local centre is or how you access it. They just tell you about it when you give consent and er... that's it. When I raise it, they say most people don't get it.
