Risk after SNB/ Lillie Shockney gets it wrong

Not to be totally obnoxious here, but with Dr. Weiss experiencing breast cancer first hand, I'd assume she'd want the information on this site to be up to date and accurate for all the women who desperately need a reliable source of information while facing tough decisions.

Obviously lymphedema information is low priority for bc.org--not to be nasty, but actions speak louder than words here, and inaction is an indication of how little lymphedema matters to to people who run this site.

Kira.

I pm'ed the moderators. I think we all have to, or they'll continue to ignore us.

Outfield, I totally agree with you--I believe that one of the rules of the site is not to give medical advice (and we kind of skirt that rule when we advise people to go get their potential cellulitis checked out....)

When we created stepupspeakout--I asked the others if we could try for HON certification, it's a review of the site to see if you're providing reliable medical information, and we got it. And that was important to all of us.

Once, when I got into a bit of an email thing with the PT who declared that LE is never painful, in response to the Washington Post article where two of us were quoted, she wrote and said "I AM an expert." Well, I am an expert because I have LE, and you just study it and fight to discredit LE training for PT's, as you feel any PT can treat LE. That said, the PT in question (member of the APTA board) has published a lot of good research. 

I have a former neighbor who moved to West Palm Beach, and she's a concierge for Hopkins. While Mayo has set up satellites to capture the wealthy retiree market, Hopkins has my former neighbor arrange transportation, accommodations, etc. 

There are patient oriented sites, and there are marketing sites, and the Hopkins site is a marketing site, masquerading as patient education--misleading and unethical, IMO

And, bc.org has never gotten around to updating their LE pages--way too busy pushing organic food.....

Kira

Voraciousreader: Glad to hear to you're doing well after the shoulder surgery (and THANK you for all the great book recommendations)

It's been a year since my hand fracture--almost--and my LE seems stable, I did have a frozen shoulder and it responded to PT: myofascial release and exercises.

The PT place I go to recently bought Julie Silver's Oncology Rehab program (it makes me NUTS that she sells it!) and I'm glad they're approaching all the issues we're left with, but again, Julie Silver, markets her books and sells her rehab program, and sees the occasional patient to call herself a clinician...She came on these boards once and was incredibly dismissive of us. She's a Harvard physician, who had bc.

I think the women on these boards could write the LE pages easily. 

Agree completely with the need to address long term shoulder disfunction, post mastectomy pain syndrome and LE.

Not just organic food.

Kira