[Debbie L.]

I agree with Brenda's recommendation, although I think most CERTIFIED lymphedema therapists are competent to deal with lymphedema, and all follow plans similar to Vodder's, even if not specifically identified that way.

I recommend a consult with a CERTIFIED lymphedema specialist after ANY lymph node surgery, whether SLNB or more extensive dissection. You'll establish a baseline, you'll be educated on what to do and what to watch for, and you'll have set up a contact point, for if you do experience problems.

The National Lymphedema Network has worked, since before this was even a generally-recognized condition, to help and educate about lymphedema. They are still a great resource: http://lymphnet.org/

My only quibble about some of the widely-disseminated lymphedema information (including that from NLN) is that some of it is not evidence-based. Lacking good research, some of the anecdotal-based advice somehow gathered momentum and became "gospel" even though it's since been contradicted by good research. This would include things like "don't ever do resistance training" or "don't ever do repetitive-motion exercise". Studies, especially Dragon-Boating ones, have since proven this advice to be inaccurate.

So here's the disclaimer: if your therapist has mandates that do not encourage you to experiment with what works for YOU and YOUR ARM, I'd be wary. We humans so like to think that we know, that we have control. Lymphedema therapists are no exception, and as I said before, some of these mandates are not based on evidence, and do not serve us well.

Another area of controversy and ongoing research is around the benefit (or harm) of wearing elastic sleeves on yet-unaffected but at-risk arms, for such things as air travel.

My basic lymphedema advice is to get that initial consult, and to pay attention to what bothers YOUR arm (or breast). It will be different for each of us. As will what helps control lymphedema when it occurs. If we remember to proceed slowly and with attention when doing any new activity involving our affected arm, we can almost-always stay on top of lymphedema (and remember, the risk of it is always there, after surgery and/or radiation).

What bothers my arm, for one example, is probably different than what bothers your arm: stillness, as in sitting in a committee meeting, on an airplane, or driving -- but as long as I remember to move my arm ("wringing it out" behind my back, reaching up to my shoulder blades, etc), it's fine. Weed-pulling (something about the jerkiness of the release, perhaps?) -- a little MLD/lymphedema-specific exercise helps afterwards. Skate-skiing (lots of arm involvement for that fun recreation), but again all it needs is the awareness, and bit of self-MLD as I drive home.