What were your first signs of arm lymphedema?

slight swelling in hand only sign and remains stable

Thank you for your response. Do you have a physician monitoring it or are you just keeping an eye on it for now?

@ffr I am being very closely followed by the physiotherapist at the clinic. I was measured for compression garments (arm sleeve and hand glove) and am supposed to wear these up to 10-12 hrs a day. I've been doing so for the past 8 months or so. At the last measurement session there was some decrease according to her, even though no swelling is even visible on the arm. I stopped wearing these for awhile about a month ago when I got a sore on my upper arm where the garment rubbed against my skin but am now back to wearing these. I am on my 2nd set, as the garments need to be resized over time. The med professionals have all stressed how important it is to take care of this asap to keep things under control, and they also say there is no permanent cure, only keeping things in check.

Thanks for your update and information.
I have lymphedema in one leg (pelvic lymph node surgery & radiation) and just received my updated compression stockings last week. So I am familiar with leg lymphedema. I had an axillary LN removed due to cancer recurrence and was never told what to look out for. (Don’t get me started on after-cancer follow up care.) I shrugged off weakness of that arm. The pain when my arm was raised for my breast MRI last year? I attributed that to an exercise injury. The PA at my annual breast exam never connected any dots, so neither did I. A few months ago I started with shoulder pain when moving my arm in certain directions. Again I thought it was from my training session. Next was “muscle soreness” that didn’t go away after 2+ weeks. After feeling a lump and then comparing my arms, I finally went to Dr. Google and 💡!! I am now waiting for a callback to set up a doctor appointment. I want to cry just thinking about the possibility of having to wear both a leg AND an arm compression garment. (Opposite sides.) Cancer is the gift that keeps on giving.

@ffr Indeed, the gift that keeps on giving! They took out about 15 lymph nodes when I had my mastectomy, all clear, but I was so wishing I could have kept them. I think that was what depressed me most after that operation, since I'd already read about possible effects from their removal.

What’s so hard is trying to live without always thinking about cancer & recurrence but then having to deal daily with the consequences of cancer. It’s impossible to block out The Big C when going for PT, wearing compression garments, dealing with radiation side effects, seeing and feeling port & surgical scars…. I remind myself that if living with these disturbances means long term survival then it’s the price I pay. But as the disturbances pile up I get concerned about quality of life in addition to recurrence worries.
We all do our best and most people don’t have a clue what we struggle with, both physically and emotionally. Thanks for sharing and for being a sounding board.

@ffr , I am so sorry about your experience with LE. I have had LE for 27 years. I had all lymph nodes and breast tissue removed January, 1998. It was not long t all that lymphedema appeared. Even though I am near major medical centers and University teaching hospitals, I had very little guidance. Eventually, I found a great therapist at a nearby hospital therapy center. It has been quite a journey. You might get started best with the National Lymphedema Network. Leave no stone unturned. I now use the Tactile Medical FlexiTouch II pump. Please reach out for ny information at these places. The people are very understanding and will help you any way they can.

Thank you for your message. I had a wonderful therapist who helped me through therapy, etc. We put a home pump on hold as the stockings were doing their job well. Of course I understand that this can change at any time. The LNL website has been helpful, as was an online cancer support group program webinar that I took. I suspect that I’m at an early stage. The shoulder issue, however? I’m not 100%sure that it’s related, but I’ve read that rotator cuff tendonitis can be a sign of lymphedema and it seems to make so much sense. We shall see….