Compassion for Dr. Weiss

Binney4

Hello, all!

All of us here on the bc.org dicussion boards are truly grateful for Dr. Weiss's prompt treatment of her own breast cancer. Many of us have sent her our sincere wishes for complete and uncomplicated recovery (not to mention a donation in her honor to keep this wonderful site going!)

But we're WORRIED. Those of us with lymphedema (and those concerned about their own lymphedema risk, which should be every woman here) are aware that at any time Dr. Weiss could herself develop this monster side effect of her treatment. If she's depending on the out-dated and incomplete lymphedema information currently available on the information pages here at BCO, then her risk is certainly higher than it needs to be.

Out of compassion and concern for Dr. Weiss, I'd like to ask as many of you as can to please send a Private Message to the moderators here, expressing our concern and urging Dr. Weiss to see a well-trained lymphedema therapist for baseline arm measurements for future reference, instruction in lymphedema risk reduction, and fitting for a compression sleeve and gauntlet to use prophylactically for exercise, travel, or any unusual activity. The threat to her quality of life from lymphedema is real, and it's forever.

Those of you who already have lymphedema, and especially those working in the medical field, please take the time to share a bit about your own lymphedema journey and the limitations you face in the workplace. The last thing Dr. Weiss needs is to experience the shock, distress, and disability of a lymphedema diagnosis that can limit her practice and leave her with a diminished quality of life.

Perhaps if enough of us make the effort to suggest that she personally take precautions, see a well-trained lymphedema therapist for personalized lymphedema education, and fix the lymphedema pages at BCO, she'll begin to hear and understand the new reality of lymphedema that has so unfortunately entered her life.

Here's the Moderator's page where you can send your message:
http://community.breastcancer.org/member/56097/profile

THANKS! Together we can make a difference!

Be well,
Binney

Anonymous

Just a question... how do you know that Dr. Weiss hasn't already gotten measurements/seen a specialist?  Did she state somewhere that she wasn't, or are we just assuming? 

Marple

Hopefully Dr. Weiss has already seen a specialist but whether she has or hasn't is no excuse for the information on BCO not to be up to date.

Binney4

Hi, Susansgarden (what an intriguing screen name! Love it!)

We don't know, but we're not just assuming in the dark either. The information pages regarding LE here at BCO don't contain sufficient information to protect her, so if she's going by that she's at greater risk than she needs to be.

On the other hand, if she's NOT going by that, and she herself has better information about the kind of care we all should have to protect ourselves from LE, then that information should certainly be available on BCO's otherwise stellar information pages. And it's not. 

Then too, there's certainly no reason to assume she DOES know, because so many doctors -- even excellent ones -- don't.

Does that help?

Be well,
Binney

BoobsinaBox

Thanks, Binney.  I'm working on what to say.

Dawn

Anonymous

Okay.. that makes sense.  I have read alot about LE on these boards... but had not heard wearing a sleeve for exercise/travel no matter what... even if you have no symptoms.  Is it recommended that with any lymph node removal... you need to do this for the rest of your life?

SleeveNinja

Hey Binney - maybe another title for this thread would be:  "Compression for Dr. Weiss" 

Marple

........and compassion for us.

ktym

Binney, now you have me worried.  I looked at the BCO.org site on LE and that is pretty much what I was told.  What is missing that I should know about?

Binney4

Well, for starters, truncal lymphedema. But also any mention of the newer research that acknowledges Stage 0 LE and the fact that catching it at that stage, before any swelling is visible, makes managing it so much less of a problem. And "catching it" is up to us patients, as we have to be aware of and respond to those sensations of heaviness, aching, or tingling by getting good help quickly. To me, letting women with BC know that what to be aware of and how to move quickly to keep it simple is crucial.

Here's a statement I personally object to: "It [LE] isn't life threatening, but can last over a long period of time. Lymphedema involves swelling of the soft tissues of the arm or hand."

"Life threatening?" It certainly can be, which is why we have to rush to the ER with a paper cut gone south.

It "can last over a long period of time." Yeah, true -- and since it's with us for life we all do hope it lasts for a very long period of time! Transient LE accounts for only a small proportion of diagnosed LE, so why not just say outright that it's usually a chronic condition for life?

Some statements aren't outright wrong, just mildly misleading, like the assertion that:
"Your risk may be higher if you...choose mastectomy rather than lumpectomy." Actually recent studies show a higher incidence of truncal LE with lumpectomy + rads than with mastectomy and no rads. But as I said, almost none of their information covers chest/breast LE.

As far as risk factors go, they also don't include AWS or seroma, or infection following surgery, all of which are added risk factors.

Here's another misleading statement:
"Current methods of breast cancer treatment lower the risk of developing lymphedema. But if you had a radical mastectomy many years ago, you may have had arm swelling, or you may still be at risk for the condition."
Shoot, if you had a lumpectomy with SNB yesterday, you're still at risk.

On their treatment page they list only the NLN's listing service for help in finding a well-trained LE therapist. That list is totally inadequate, as therapists pay to be listed on it. Fully trained, experienced lymphedema therapists who don't care to pay the NLN aren't listed, which seriously limits our ability to find good care (especially in rural areas, where LE therapists are rare enough anyway.)

Look over their page on "Compression Sleeves" -- see any mention of a glove or gauntlet? Nope! And that omission is potentially downright damaging to women. They also fail to mention night sleeves, an omission that at least won't do anyone any damage, but it's simple enough to mention briefly for those women who've never heard of it.

In choosing a therapist, they suggest that you "Ask potential therapists whether they have taken a special course and how many hours of lymphedema training they have received." My first therapist assured me she was fully trained, and she was a weekend wonder who worsened my condition considerably. I'd asked her -- but how was I supposed to know the right answer? The BCO information doesn't tell us that.

The page about sudden onset swelling is accurate as far as it goes, but there are other reasons besides infection for sudden swelling, including blood clots, which require more than an antibiotic prescription, and women need to be aware of that.

The information that "lymphedema Alert pink bracelets are available through the National Lymphedema Network" is just inaccurate. They sell teal-colored LE awareness bracelets and metal alert bracelets, but the pink ones for heading off over-zealous medical folks are free at the ReidSleeve site.

That's my take, anyway. There are other newer developments that it would be very helpful to include, because they're important now and are likely to become more so as research progresses.

Be well!
Binney

AnnaM

Thank you for all the helpful information, Binney, and thank you for looking out for all of us!

ktym

Thanks Binney, that is a lot of missing information.

NJMarilyn

I will be undergoing a mastectomy within a few weeks and wonder how I would find a LE therapist before surgery?  It seems that it would be a good thing to do.  Thank you.

kira66715

Here's a link--it's a great thing to do, to get measured and learn some self massage

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

Hope all goes well.

Kira