Could this be early/mild LE? On my "good" side...

I had a BMX with nodes taken from both sides. My BS prescibed sleeves/gauntlets for flying. Mine are interchangable, since both my arms are similarly sized & require the same amount of compression. It is my understanding that you should wear a gauntlet with your sleeve. Ask your LE therapist.

Inde, welcome!

We sure do hear you on the difficulty of trying to wrap your mind around the complexities of LE. It works best to take one issue at a time.

1. Never wear a compression sleeve without some kind of hand protection, either a glove (where only the fingertips are uncovered) or a gauntlet (which is a fingerless glove). The reason is that when you have any swelling without compressing the hand, it can get trapped below the cuff of the sleeve in your hand, where it's harder to get out.

2. If your arms are the same size, the sleeves are interchangable, though you may want to have two since both arms are at risk. Even prophylactic mastectomy creates a LE risk (in fact, my LE started on my prophylactic side, and remains hardest to handle on that side--no nodes purposely removed, but there's still scar tissue and just general trauma).

3. Training of LE therapists can vary widely. You want one with at least 135 hours of specifically LE training beyond her/his PT or OT certification. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

4. LE can start anywhere in the affected quadrant (in your case and mine with bilateral surgery, anywhere above the waist and below the neck, either side). It can stay in one small place or affect the entire quadrant, so you want to see a therapist soon for evaluation and possible treatment. Trust yourself on this: you're not imagining things, and you need to get them checked out. Fullness, achiness, tightness, or tingling are all indications of early-stage LE. Treating it promptly means it will remain easier to treat and control.

5. You'll want to consider prohibiting blood pressure, blood draws, IVs and injections in either arm. Many of us use our feet for blood draws, hips or thighs for injections, foot or neck for IVs and lower leg for blood pressure. Your call!

Please do let us know what you discover. Be well!
Binney

indenial, do think about getting a neck IV for your treatments. Think about it-- you may well have LE in your non-node removal side, which would strongly suggest you're predisposed to get LE.  So why tempt fate and have an IV put in your 'bad' side? I've never had a neck IV, but I definitely recall reading in posts here that women who have done that comment afterward that it wasn't bad at all. 

In a perfect world, you'd find a well qualified LE therapist and get in to see him/her before your next chemo, so you'd have an expert opinion on whether this is actually LE, and a strong voice in your corner for a neck or foot IV if that's what he/she recommends.  But the world is not perfect and getting that appointment asap is very hard to do.  On the stepup site that Binney linked to above, there's a wonderful page of information for healthcare providers, and there's a downloadable excerpt of it you can print and bring to your next chemo appointment.  These pages explain the importance of taking LE seriously and respecting appropriate precautions. They were written by a doctor, for her peers.

If it's LE, it won't go away on its own, but the sooner you start managing it, the less intrusive it will be on your life.

Keep us posted!

Carol

My MAst.'s were about a year apart. In a lot of cases my prophy side is still WORSE than my BC side. It got such a hard time dealing with  the chemo, anesthetics and other inputs, numerous blood draws, blood pressure taken. The I started getting rashes, with every needle placement, even blood draws. When I had 2nd Mast. I got a seroma and the swelling has never completely gone away. I still have a lump in my bicept I believe was caused by BP. So you see, our prophy sides are VERY much at risk. I have little choice but use my foot and leg for needle placement and BP. It can be a nightmare dealing with the medical profession when youre trying to protect yourself from them as well as get help from them at the same time.

Indenial, I am trained as a LE therapist, and clearly have seen arms/ hands swell after blood draws, IVs and blood pressures.



I just had a hysterectomy due to tamoxifen induced endometrial precancerous changes, and my LE arm was wrapped, but my good arm blew up from a blown IV. My LE therapist came to the hospital and worked on it and its down, thank goodness.



LE can be a systemic, full body problem, and a mx sets you up as does chemo.



It's at risk, and clinically swelling, so IMO I'd avoid traumatizing it if you can.



And having been trained as a LE therapist, the training is 135 hours, and people really have to keep learning and not get dogmatic. There was a PT in my class whose hospital pushed her into it, but she's so professional, she did a great job, asks for advice on tough cases and wants to be my study buddy for LANA. Quality and knowledge varies.



Let us know how you make out