Any Massage Therapists Out there with LE

CCL

I would love to hear from other massage therapists out there that have done radiation and had good results and also that have developed lymphedema.  I am a single mom and this is my income. Im about to start radiation, after chemo, lumpectomy and 20 lymph nodes removed in L arm.  i already feel there is still swelling under arm and in upper arm from suergery that has not gone away and a slight numbness and tingling in upper arm.  The thought of getting LE is making me question whether i should do rad or not.  Can i still massage if i have it?  Side note.... how long till hair starts growing back and the weight the steroids put on come off?  I still cant believe this happend to me.  Freaking out and trying not to lose it emotionally every day. 

Binney4

Aw, CCL, I'm so sorry for all these concerns! But you're sure wise to be asking these questions.  Best bet is to get a referral now to a well-trained lymphedema therapist for evaluation, baseline arm measurements, and personalized risk reduction tips. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Here are some general risk reduction guidelines you'll want to know about if you don't already:

http://www.lymphnet.org  (See their Position Papers)

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

I hope there are other MTs who can respond to your concerns, though I don't recall any who have mentioned it. We do have a lot of women with careers that involve their affected arms though -- artists, musicians, factory workers, hair-dressers, nurses, doctors, ranchers, moms with small kids. So there will be many who can share your concerns and hopefully offer suggestions.

Especially with kids you want to do all you can to fight the bc beast right from the start. The good news is that with proper care and oversight you can do that and also do the best possible to protect your arm. Tell us how we can help!
Binney

CCL

thx!  Unfortunately my insurance denied lymphodema care.  i will go to the sites you suggested as i am educating myself to do whatever i can to help the situation. 

Anonymous

You might get some information from this web page - hopefully Tracy has trained someone who lives in your area.

http://www.tracywalton.com/

 I see a massage therapist who was trained by Tracy - and I credit her with not only relieving sweling, but also the SE's of Arimidex, terrible joint pain.  I hope you find someone in your area too.

CCL

That is new information to me.  Thank you... i will look that up. 

Anonymous

CCL

There may be others doing this cancer related massage work too, I just know about Tracy Walton because she trained the woman I see.  I really feel blessed to have found this woman who treats me.

I know you didn't ask about it, but acupuncture has REALLY helped me too.  

kira66715

CCL, I'd appeal the denial--have you even been assessed to prove that you  don't have LE, and the newest position paper of the National Lymphedema Network is calling for early detection and treatment

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

If you go on the sites of the major training schools: Klose, Vodder, etc, many have trained LMT's and they can not accept insurance, and are often great therapists.

There is a national law that guarantees coverage for breast cancer and side effects--Binney has the reference, I'd let your insurance company know.

They're running contrary to national guidelines and federal law.

Kira 

Binney4

CCL, here's a statement about the Women's Health and Cancer Rights Act of 1998 which legislates coverage for lymphedema:

http://www.cancer.org/Treatment/FindingandPayingforTreatment/ManagingInsuranceIssues/womens-health-and-cancer-rights-act

Hope it helps. Be well!
Binney