When did you notice first signs of Lymphedema?

Three weeks after my lumpectomy: I had no post op instructions and thought it was important to stretch through the shoulder, so was hanging from door frames and got a whopping seroma and axillary web syndrome and saw a "trained" LE PT who had me doing repetitive movements of the arm, and went to the beach on a hot day--my sister was visiting and insisted on a sight seeing tour--and got bug bites and woke with a swollen hand.

And was told it would get better after rads. Guess what, it didn't.

I had Surgery Chemo then Rads. Reckon Rads set mine off which was about 6 months after surgery. I dont remember much swelling as such, but had the pain and aching which alerted me that something was up.

I noticed some fluid filling in right after they took my drains out post mastectomy. Not too noticeable to anyone but me. I was watched and measured before surgery by LEist and after...was fitted for sleeves to wear when flying or exercising. Did fine all summer...always compliant with sleeves and MLD. LE got waaaaay worse during the end of 6 chemo. My whole body swelled up from the Taxotere and it made my arm balloon. I now wear 24 hr compression. Boo.

Imcclure, yes, you can have swelling only on your trunk. That's where mine started. Best to get help promptly because this is quicker to fix and much easier to manage on-going if you do. Here's how to find a well-trained lymphedema therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Please keep us posted!
Gentle hugs,
Binney

My BS noticed the swelling within weeks of surgery and sent me to a PT. I was advised, in the hospital right after surgery, to stretch my arm and do exercises above my head right away or the arm could freeze. Also had cording develop within a month.

One study showed that immediate above-shoulder stretching and range of motion exercises increased LE risk by 2.7 times compared to patients who waited 7 days after surgery before starting.  At the end of one year, both groups had the same range of motion and flexibility, so waiting the week did not cause movement issues. Unfortunately, news of this study has been very slow to reach the surgeons who give the stretching orders.  

Musical, the study is called 'A randomised controlled trial of two programmes of shoulder exercise following axillary node dissection for invasive breast cancer' by Jacquelyne Todd et al; Journal is Physiotherapy, published in 2008.

There were 116 women in the study, of which half did the standard exercises immediately, and the other half waited a week.

So, it's been a few years since this was published.

Carol