Is this the start of Lymphedema?

beatrice00

I had BMX with SNB on the left side three months ago and in December my left arm was measured to be between 1/4 inch to 1 1/4 inches larger than the right arm, with the upper arm being the largest difference. I am a right handed. I lost some weight because of stress and as of Friday both my arms went down in size slightly but my upper left arm is still growing. The swelling starts 2 inches above the elbow and is 1 3/4 inches larger. Is this the start of Lymphedema? The occupational therapist said not to worry about it and that I don't need to do anything about it. I also have swelling in my underarm, the side of the body and underneath the tissue expander. The therapist is local near my home, not at Sloane-Kettering. Do I need to go to Sloane to an expert for this? 

carol57

Beatrice, if I were you, I'd definitely go to a lymphedema specialist at Sloane.  You're experiencing swelling that's very typical of LE, although it's also possible that you're having post-surgical swelling that will reverse itself in the next month or so.

Have you explored Stepup-Speakout.org?  It's a wonderful resource developed by three women with LE after breast cancer, and it includes many topics that will help you.  I'll link to the one about diagnosing LE: http://stepup-speakout.org/diagnosing_lymphedema....

Some studies have shown that post-surgical swelling of the arm is often temporary, so wait a year before treating it, but other studies have shown that treating the earliest signs of swelling as LE and using compression sleeves/gauntlets in response can improve the chances that LE does not progress. I'm one who leans toward treating it as LE.

Unfortunately, LE studies often contradict each other because they use so many different criteria for a LE diagnosis, different measurement methods, and different follow up periods.  My hope is that the LE clinic at Sloane is top notch and they'll immediately recognize your symptoms as something to respond to, not dismiss.  They probably have top quality measurement methods and can work with you to discover other symptoms of LE that you may be having without realizing it.

I'm sure others will come along to chime in with their thoughts. We're rich in LE experience in this forum, that's for sure.  

Best of luck checking this out. The most progressive breast cancer centers are moving toward LE surveillance and early intervention, so your questions are right on target and I'll bet Sloane will respond as you need them to.

Carol

LymphActivist

Beatrice: Your symptoms sound suspiciously like lymphedema, and you should be seen by a knowledgeable lymphedema therapist, preferably one who follows the current literature. This is important because lymphedema treatment and prevention recommendations are changing in the last few years, and you definitely want to follow the current knowledge. There are two important issues you want to follow and take action on. The first is the role of exercise not only as a component of the treatment of lymphedema, but also as a possible preventive. And there are a number of recent studies which confirm that it is important to take early steps to PREVENT lymphedema rather than to wait for the traditional "10% excess fluid" or "2-cm growth" criteria to start taking action. By then there have probably been tissue changes which make it more difficult to treat the LE. Two such studies you might look into are by Nicole Stout (wearing compression on detection of 3% excess fluid) and by Andrea Zimmermann (doing MLD immediately after surgery and radiation).

beatrice00

I went to my doctor at Sloane who referred me to a lymphedema therapy specialist and then sent me for am immediate ultrasound of the arm to make sure that I don't have a blood clot or anything else wrong. She thinks that I have lymphedema and said that I need to be evaluated promptly. It's really wonderful to deal with knowledgeable doctors! 

carol57

beatrice, the doctor did exactly what we hope every doctor does in that circumstance, including checking to rule out a blood clot.  Hooray for a well informed doctor and an immediate action plan!  So sorry you seem to have LE, but now you have a path that will give you a treatment strategy, and hopefully catching it early means you'll respond well to treatment and you can tame the beast!

beatrice00

My doctor called that the ultrasound of the arm was fine but the scan of the side of the neck found a nodule on my thyroid. This never seems to end!