Lymphedema?

jarris, did you  have chemo?  An interesting study published in the last year or so found that women who had taxane-based chemo often had swelling that resolved within about a year.  That your swelling is on the side opposite your node removal does raise the question of another explanation besides LE, although it certainly is possible to have LE develop after prophylactic mastectomy...several members here have had that experience.  That said, those I can think of also have LE on their cancer and/or node removal side.

LE therapists, if well qualified, should be able to consider all of your circumstances and be pretty accurate in diagnosis.  You could seek imagine --lymphoscintigraphy--which literally maps your lymphatic vessels in the areas examined.  But I don't know how widespread the technology is, nor do I have a clue about insurance coverage.

Another perspective is that LE swelling can largely resolve over time, if you're lucky, but it doesn't mean you no longer have LE--just that your LE has receded to a latent, or stage 0 state.  That's where I am, with very rare visible swelling in my arm.  But I still feel the LE.  I get heaviness feelings, often a burning sensation, and my arm aches, aches, aches when I've over-done activity, or when there's a storm brewing, or when I'm in the mountains.  Does your arm feel like your personal barometer?  These kinds of sensations do signal LE. 

I wonder if you've just had the good fortune that much of your swelling resolved.  If so, it's sure important to remind yourself that you do have LE, because the sensations would be telling you that you do have diminished lymphatic capacity, and that leaves you at risk of infection after a cut, burn etc.  and (in my case) I worry that it's a set-up for more advanced LE later.  So I wear my compression sleeve and gauntlet when doing risky activity, such as weightlifting in the gym, kayaking, during air travel, and anytime I'm using my arm for heavy or repetitive work.

My guess is that you need garments to be able to use them at minimum preventatively. If you need custom, that can be a financial killer, but I'm also guessing that you're at particular risk of LE, even if your swelling for some reason had nothing to do with LE. The kind of swelling you experienced after mx-only seems to me to suggest some kind of lymphatic insufficiency.

But I'm no doctor, and unfortunately as you've discovered, LE keeps us all guessing.  Sigh.

Good luck deciding what to do!

Carol

jarris, I'm Ohio born and bred, although for DH job reasons I've defected to Michigan. So that means I'm well acquainted with Ohio's hot, humid summers.  Most of us have worse LE in summer, so get ready.

Here's a link to an abstract of the study that suggests taxane-based chemo may provoke temporary swelling: http://www.ncbi.nlm.nih.gov/pubmed/23494582

Perhaps your son has library access to the full study.  If not and you're interested, PM me and we can exchange emails, and I'll send it to you.

I really hope that your swelling has moved on and you're in prevent-and-protect mode instead of having to deal with constant puffiness!

Carol