Lymphedema how common is it

Hi:

 I had 21 lymph nodes removed on March 30. I have no signs of lymphedema, and my last screen was last Friday (screened regularly at MGH in Boston). I'll let you know if any changes occur after radiation in October. I don't think it's possible to figure out who'll get it, and who won't.

Unfortunately, a lot more research needs to be done in this arena.  My physical therapist averages, based on her research, up to 3-5% risk per node.  It's not just the node removal, it's the healing process, the radiation, and other trauma to the area that also need to be factored in.

I wear a sleeve, I had 6 nodes removed. Keep in mind the jury is also out somewhat on whether that actually provides benefit if you don't have LE.  I have seen people wear the sleeve and get LE in flight on these boards.  I've also seen people who wear one and didn't get it.  I chose to get one because it makes me feel proactive. But I'm also sober that a lot more research needs to be done.

Check out Kira here, there are lots of awesome threads to help you prepare for travel.  It's not just the sleeve, you can eat and drink properly, do deep breathing, and massage. 

ccjj: since there is no one definition for LE, no one knows how common it is.

Jane Armer PhD has followed over 250 women for almost a decade, and depending on the method she used to measure them, the incidence was between 40-90%.

Ignorance of LE, and lack of screening of LE are rampant.

Any time any of us has nodes removed, we're at risk. For life--unfortunately.

The most important thing we can do is be aware of risk reduction practices and consider seeing a qualified therapist for baseline measurements and advice.

http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm 

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm 

Here's a link to the National Lymphedema Network Position Papers:

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm 

They've done some great studies on lymphatic systems, and those of us who got it (and I got it shortly after a sentinel node biopsy) likely didn't have "robust" lymphatics to start with. But I also had a seroma (risk factor), early axillary web (risk factor) and then rads (risk factor).

Graneulle goes to Mass General where they screen all patients with a laser perometer before and after surgery. It's a great standard, and should be the ideal, but it's rare for an institution to be so pro-active.

Some of us got it with one node out, some had a full axillary dissection and rads and are fine.

Just learn to avoid the avoidable and stay alert, as early treatment is crucial.

Wearing of a sleeve and hand protection while flying is controversial, but the NLN recommends that each patient assess their risk and consider it--it's one of those position papers linked earlier. Some therapists like a lower compression garment on the arm for at risk. If you're at risk, never wear a sleeve without a gauntlet or glove.

http://lymphedivas.com/lymphedema/gauntletandsleeve/