Possible Lymphedema ??

Request a referral to a Certified LymphEdema Therapist - not just a PT who claims they 'know ALL about LE'.  It is possible to develope LE with any surgery - rather or not any nodes are removed.  IF it is LE - the sooner you learn to manage it the better, if it isn't then at least you will have been measured and educated about LE.  There is no one way that it effects us individually.  It is ppssible that you are experiencing minor swelling and not realizing it.  There is no timeline for developing LE IF you do - it can be relatively quick or not for years.  In my case, it was 6 weeks post UMX and I don't have truncal LE, my bad reagon is my elbow area primarily.

It is possible that the feelings are related to the sirgery amd the nerves healing and giving you 'strange' feelings.  But you should be checked by a Certified LymphEdema Therpist to find out.  Unfortunately, therd are  many Drs who know little to nothing about LE, even among those who specialize in breast issues though it can happen after any surgery or trauma.  I was lucky - I had very knowledgeable Drs who had me to mu CLET guy before I had really realized I need to see about it.

When you say you're using compression what are you using?  Prescribed garments?

It baffles me how some physicians do not seem to understand the physiology of the lymphatic system, how removal of the breast mass often involves removal of the lymphatics that drain the breast and chest, and that you can get lymphedema without removal of any nodes. And oncologists often do not understand the long-term damages to the breast lymphatics that are caused by radiotherapy even when limited to the breast and not intentionally the axilla.

To comment on the above, whether your doctor thinks you have clinical lymphedema (10-20% excess limb fluid) you should demand a referral to a qualified lymphedema therapist (with CLT or CLT LANA after their name) for an evaluation for lymphedema of the upper quadrants (arm, hand, shoulder, breast, chest, trunk) that have had surgery and/or radiotherapy. It is never too soon. A recent study (Zimmerman 2012) showed that manual lymph drainage on breast cancer patients starting as early as 2 days after surgery and performed for 6 months was able to prevent lymphedema while the matched control arm that received "usual" care (therapy only after clinical swelling noted) grew to 10% swelling after 6 months. And make no mistake about it -- any swelling indicates that undesirable processes have started in the affected tissue involving inflammation, fibrotic and fat growth and functional impairment. The longer this process is allowed to progress, the harder it is to reverse.

Heather, it is good that you're getting that referral. I went for referral because I could see and feel swelling in an area on my side, under the armpit where I'd had 5 nodes removed. I was dumbstruck to learn at that first consultation at an LE clinic that their perometer measured 10% more arm volume on that side, compared to my unaffected side.  And normally the bigger arm should have been smaller than the unaffected arm, because it's my non-dominant arm.  So I couldn't see the swelling, it was minimal, but it was there.

I still don't see swelling except for incredibly rarely (thank goodness!), but I sure do feel it when lymphedema is acting up.  I get a heavy, achy feeling, and a sense of immense arm fatigue--even though I literally have the strength to lift very heavy weights and objects.  I also get a burning feeling, but it is a 'background' kind of feeling, not a sharp burn.  When I have these sensations it means I should be in compression but I'm not, and it sends me straight to the compression sleeve drawer.  That usually makes things feel much better.

Another interesting outcome that suggests lymphedema to most of us is when a change in barometric pressure makes the arm ache, and sometimes swell visibly more than usual.  Big storms as well as driving up into a mountain area can do that.  If your arm is your personal weather station, that's a strong indicator that you've got excess lymph floating around.

If I went to a therapist who relied solely on arm measures, no one would think I have LE.  Yet the subclinical symptoms are bothersome, and they need to be addressed because as lymphactivist said, we need to treat early to stop the progression.  Be sure to ask about subclinical LE to make sure that the therapist doing your evaluation is not someone who needs to rely on a tape measure to take your symptoms seriously.  I do wonder about the pain in your armpit, because it's sharp in the morning when LE symptoms are often at their least, and movement makes it worse.  That doesn't mean it isn't LE, which has more twists and turns in symptoms than I ever imagined, after reading everyone's stories here.  But be sure to keep an open mind and press for answers if the LE therapist isn't convinced it's LE.  Whatever is causing that pain, you sure need to identify and work on fixing the problem.

I'm sending you cyber brownies, our standard approach for helping to shore up morale when figuring out or treating LE isn't going well!

Carol

Jennie, you have just proved the rule that all of us have different LE experiences!  My LE worsens during the day.  Your thought about fluid moving is very logical.  And no kidding about docs in LE denial.