Do all breast cancer physical therapists have LE training?

Lisbeth, this is a sad situation. I don't think you should call yourself a breast surgeon and not know anything about LE either, but unfortunately it's not a part of their skill set.

In answer to your question, though, there is no legislation in any state concerning the training necessary to treat lymphedema. Any PT or OT can call themselves a LE therapist with NO further training beyond their PT or OT certification requirements. So it pays to ask about training before letting a BC PT start in on you. There is a LOT of damage that an untrained PT can do when they're untrained in LE prevention and management. The standard recommendation is for at least 135 hours of specifically LE training beyond PT or OT certification, and at least a year's supervised clinical experience in LE.

So not only do BC PTs not have to know much about LE, neither do those PTs and OTs who call themselves LE therapists. The first therapist I went to ran a "LE Clinic" at a large hospital near me. Her first words to me were, "You don't need to worry about anything, because I'm fully trained in LE." After she caused my LE to spread from my chest to my entire right arm and hand with her inept treatment, I discovered that her idea of "fully trained" was a weekend wonder course. In fact, she'd never had a patient with truncal LE before, had no idea what compression products were available much less how to fit them, and didn't have a clue about how I should be exercising, or the pattern I should be using for Manual Lymph Drainage. There were no other LE therapists available on my insurance, so I filed an appeal and eventually won the right to see a real LE therapist.

Before I quit this rant, I have to add that the reason there are no laws regulating the training a LE (much less a BC) therapist must have is because both the PT and OT professional organizations are very powerful, and they're strongly opposed to requiring any further training for their members to treat us. So if they get 15 minutes training, or even a weekend quickie course, that's more than they're required to have. To darn bad about us patients. That reality simply takes my breath away, so I'll quit here before I get any more worked up and lose my balance up here on my soapbox.

Be well!
Binney

Lisbeth, the APTA was against a recent bill introduced into Congress, that would require insurance coverage of LE care and garments---initially the law also set standards for lymphedema therapist training, and once they removed it, the APTA was willing to support it.

The APTA is adamant that any PT can provide LE care, with no additional training. Yet studies show they receive little or no training on LE in their standard curriculum.

Don't know why they'd want to exceed the scope of their knowledge and harm patients, but that's their official stance.

http://www.apta.org/PTinMotion/NewsNow/2011/7/20/HR2499/ 

WEDNESDAY, JULY 20, 2011
Bill Enhances Lymphedema Treatment for Medicare Beneficiaries
Legislation introduced last week by Rep Larry Kissell (NC-D) and 17 other original cosponsors enhances lymphedema coverage and better directs treatment methods for Medicare beneficiaries. Specifically, the Lymphedema Diagnosis and Treatment Cost-Saving Act of 2011 (HR 2499) defines lymphedema diagnosis, treatment, and compression treatment items; clarifies which health care providers can provide treatment; and ensures payment for treatment.
Introduced in the last congressional session, HR 2499 has undergone a number of revisions. APTA Board of Directors member Nicole Stout, PT, MPT, CLT-LANA, led efforts to eliminate additional certification requirements, clarify which providers can provide diagnosis and treatment services, and remove restrictions on garment fitting. The new, streamlined legislative language is less confusing and more flexible. Due to these changes, APTA now supports this legislation. 

Kira 

Lisbeth, the bill was advocating the 135-hour training standard that's endorced by the National Lymphedema Network, the Lymphology Association of North America, and of course the newly-formed North American Lymphedema Education Association (whose members are all the responsible LE training schools). It isn't an unreasonable training requirement considering how little the lymph system is taught in any medical training. More information about therapist training here:

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

and here:

http://www.lymphnet.org  (see their Position Paper on "Training")

Hope that's helpful. Wish all our bc Sisters were aware of it!
Binney

Oh my, I haven't had time to read through this whole thing... but as a PTA, I don't even know what a "Breast cancer physical therapist" is! This is certainly not a specialty. I would ask loads of questions regarding training: "What exactly makes you a breast cancer specialist?" "What kind of continuing education have you had related to treating breast cancer patients?" "How many CEU's - or contact hours - of breast cancer or lymphedema treatment have you taken?" As Binney has stated - a lymphedema therapist has taken a continuing education that is an intense course of at least 135 hours. I am a lymphedema trained therapist, but it was so long ago and with a different method than my first lymphedema therapist that I hesitated to question her skills - thinking that she knew what she was doing. She didn't. I don't know what insurance paid for her to "rub my arm"... but I could have gone to a LMT therapist for the Swedish type of massage she gave me. The only time she ever bothered to start my treatment by emptying my truncal, groin and contralateral axillary nodes was the very first treatment. I was "robbed" of decent CDT - and I let it happen thinking that maybe treatment had really changed that much since I had gotten my certification 15 years prior OR that this method was just really different from the way I had learned. (Oh, jeez... I am OLD!) The method, although different, was the same general concept - I would find out years later - but this particular therapist either didn't know or didn't care to do MLD the way it was supposed to be done. Anyway, ask questions! If it is making things worse AT ALL - step back and look further for another therapist or ask if there is something else that may work for you. Sometimes something that works for another person's LE may not work for you (in general I am talking about sleeves here, because for me, less is more so everytime they try to fit me with a really compressive sleeve, I end up bigger than before! -and that is just a learning game!)

Anyway, question and research. You have the right to know what kind of training your health care provider has - whether PT, MD, OT, nurse, etc. 

Lisbeth, I have had physical therapists who are breast cancer specialists, and have some training in LE, but not certified through some agency I have heard about on here, I can't remember the name right now. I do not have lymphedema (at least they told me I don't. I still wonder. I have feelings of swelling at times but don't know if it is nerves interpreting sensations wrong or if it is real. I did find it interesting that I have lost four inches around my upper right arm since I started with these two new pt's since June but the one said she can not comfirm I have LE). I have nerve damage and scar tissue adhesions from the double mastectomy and node dissection that they work on me for. Not everyone who gets breast cancer gets nodes removed either. My surgeon really didn't feel the need, since I had DCIS, but I told her I wanted them checked just in case since they can't go back in check them later.