Risk after SNB/ Lillie Shockney gets it wrong

Together, we CAN make a difference!

BUT, there's a lot more to be done here. Lillie needs to do more than refer patients to their doctors (who are too often not much smarter than she is about LE) -- she needs to get educated about lymphedema, and preferably about all the post-breast cancer long-term side effects, which she apparently has been fortunate enough to avoid personally. You can't be a breast cancer "expert" anymore without seeing the big picture of survivorship and all the side-effects of treatment that complicate it, and that's what's needed here.

I would also remind us all that Lillie is still a BC.ORG "breast cancer coach," and she has other far-reaching influence at other hospitals and organizations that influence the direction of both education and funding for lymphedema. So we still await BC.ORG's reflection on these issues and look forward to their ideas for dealing with both Lillie's committment to educating herself on LE, and updating LE information and patient need-to-know on this site.

We're not done until no LE newbies ever have to say, "Nobody told me!"

Onward!
Binney

P.S.- The National Lymphedema Network international conference for professionals is coming up in September. They offer a full-day Physician Intensive for doctors and nurses that covers the anatomy of LE, differential diagnosis, imaging, treatment and training, genetics, and current research, all taught by experts in each of those fields. It's very privately for doctors and nurses only, not even therapists may attend, so the setting is safe and comfortable -- an excellent "teaching moment" for our medical professionals. I'm hoping both Lillie and someone from BC.ORG's medical board might be able to attend. Great opportunity! Go for it, please!

Hi Again All, 

We are (still) looking into what she posted on the Johns Hopkins Website, and we'll let you know when our editorial and medical team has formed an opinion. We have a very large, and diverse Professional Advisory Board (PAB), and we naturally cannot screen all their comments and medical advice.  However, we sincerely understand your concerns, and will certainly follow up with you. 

Thanks for your patience,

Melissa and the Breastcancer.org Team 

Melissa, thank you so much. We certainly understand your inability to monitor a large group of professionals (or even a small one) -- sort of like herding cats! So we truly appreciate your taking our concerns into account. Please express our gratitude to the team.
Binney

P.S. to MOTC -- that's the only response we've gotten. Nothing yet from Johns Hopkins or Avon.

Thank you Melissa.

I think Kira has made several brilliant points above, as to the connection between Dr. Shockney and the perceived 'endorsement' of BCO -- as she appears so prevalent.

I hope that your investigation and review bring a breath of fresh air and tons of new support, research and information regarding LE.

Thank you.

First, I take lymphedema very seriously and have good friends that have suffered from it. I am sorry for the frustration it can cause, and appreciate the desire to have others understand it and avoid it. I have had a sentinal node biopsy where two nodes were removed and whenever possible I have blood pressure and blood draws from the opposite side. There have been times when that was impossible, and I suffered no ill effects.

Having said this, I have to say that the tone of the above comments sound like a "tempest in a teapot." Rather than an attempt to educate they come across as having a rather mean-spirited agenda to discredit Lillie Schockney. In re-reading her advice in context, I do not hear her saying "there is no risk of LE from SNB and to ignore risk producing behaviors" as claimed. Regarding the blood-sticks and blood-pressure she is right to have the woman be sure that she indeed had nodes removed from both sides. If in fact the woman has had nodes removed from both sides, but can't have blood draws/pressure taken from her legs she can be reassured that the risk is low--not zero but low. Regarding hot tubs, she made it clear that everyone needs to make their own decision and that she is not aware of anyone with just snb that had a problem. Sounds like good info to me. Are you aware of info on this that says differently? If so share it...otherwise you actually weaken your position when you sound so cranky.  Having said all this, perhaps Ms. Schockney can clarify her advice further in the future--so ask nicely. Life is too short to get worked up and throw stones at someone who is trying and usually succeeding to help others.

Faithandfifty--

Mrs. Lillie Shockney is a registered nurse with a BS degree in Health Care Administration from Saint Joseph's College and a Masters in Administrative Science from the Johns Hopkins University.

She is not a physician or any type of medical doctor.

I do not believe she has any formal education or training in lymphedema, its causes, diagnosis or treatment.  Or risk reductions.

Someone please correct me if I am wrong.

Sarabehealed--I am very happy that you have not developed LE, and certainly hope you never do.

I must admit it has taken me nearly three years to get over my "anger" at my breast surgeon who told me I would not develop LE since I only had two sentinel nodes removed, no surgery on the right side.  And I did not take any risk reductions because of that advice.

So, here I am today, with bi-lateral LE, breast/chest LE, and LE of my left thigh.  Not what I consider a tempest in a tea pot at all!!

As Binney states, its a full blown hurricane I live with every day of my life.

If we can prevent anyone from taking bad advice from someone who holds herself out as an expert on LE, which obviously she is not, so that they do not have to join out "swell sorority" we will be very vocal about it.

That is one of the reasons we started the StepUp-SpeakOut site, so women will have medically accurate information from true experts in the field of lymphedema, and support in living with this condition from their "swell sisters."

We have been trying for a very, very long time, very nicely, to communicate and educate Mrs. Shockley about the realities of LE from Sentinel Node Biopsies.

There is plenty of medical research clearly demonstrating that the risk of LE from SNB is not zero. 

Medical References with links.

Please note this link specifically regarding providing patient's appropriate information on LE: 

The Effect of Providing Information about Lymphedema on the Cognitive and Symptom Outcomes of Breast Cancer Survivors. College of Nursing, New York University, New York, NY, USA, mf67@nyu.edu. Ann Surg Oncol. 2010 Feb 6. [Epub ahead of print] PMID: 20140528 [PubMed - as supplied by publisher]

Sarah, several of the women here started the website Step Up Speak Out and have become national experts on the subject of LE.  You can bet they are well aware of all the studies on the subject, far more familiar than LS herself.  We are very fortunate to have them here.

And, as you can tell, the history with LS goes way back.  She has been asked nicely, over and over again.  If women with LE themselves didn't take it upon themselves to educate themselves and others, to advocate for themselves and others, things would be even worse than they are. 

Kane, "the further I got away from surgery the less chance I had of getting it," huh? I just "met" a woman on another board who developed lymphedema at the age of 69 -- 39 years after her surgery. (Not SNB, obviously, but still....) Is she angry? Oh, baby!

Binney

Thank you for taking the time to educate me...I did not mean to offend anyone, as I know the risks are real and the results can be devastating. I am careful about avoiding certain things and think it is prudent to err on the side of caution.  I had not realized that people had tried for a long time to resolve this issue in other ways and I hear your frustration. I hope you get some satisfaction, because it is an important issue.  I do think that it would be more helpful to say you don't think that Ms. Schockney has taken the issue seriously enough--and I definitely agree that most physicians don't educate nearly enough on this. I don't think it is helpful to make it sound like she has said that there is no or zero risk with an SNB, because that is not accurate and hurts the credibility of those making those kind of statements. Best of luck to you all. 

Jane et. al. SHE'S NOT A DOCTOR?!?!?!?!?!?!?!?!?!?!

Oh for Pete's sake.

Now I'm seriously wondering about the white lab coat for the pose????

Seriously?

She's not a doctor?

What exactly are her credentials to be my coach?

I'm amazed.

Just goes to show what a title & a labcoat can lead you to believe.

I was totally duped.

Now Sarah.

I am a pretty civil person ordinarily. I read your post earlier this afternoon & decided that it was in my best interest & that of posterity NOT to respond upon reading it initially.

Earlier this year there was one of your "tempest-in-a-teapot" reactions on the Stage IV thread here on this site, after earlier-stage individuals posted disrespectful inquiries to our sisters here facing their diagnosis. At the time those uninformed posts turned my stomach. Several suggested a positive attitude was what was lacking in the fight against Stage IV.

The moderators had to intervene. In the end the entire forum was changed to invite only those w Stage IV and their supporters to post in that forum.

Hmmmmmmmmmmm. Got me to thinking. If you haven't experienced LE maybe your qualifications for commenting on the attitude of those whose lives have been impacted should be taken into consideration...... and then perhaps your comment could be removed by the moderators.

I wonder how you would have responded to those pushing for civil liberties a couple decades back. Were those folks cranky?

If we can not get our fellow BC survivors to "understand" the impact of LE...... then I am truly at a loss as to how long it will take to get the general public to grasp the enormity of what is involved.

This is me, holding my tongue and counting to one thousand several times. Me, with my BC sugeon who has told me that it is an impossibility for me to have LE. Me, being treated with PT, Kinesio taping and compression garments awaiting a dx.  Me, a month later waiting for my second opinion surgeon appointment still two weeks away. Me running from office to office to find someone both educated/informed & compassionate & informed.

Tempest-in-a-teapot. I must tell you. I think that is THE singular most disrespectful term that I have read here. Granted I frequent 'happy' threads, but your post reflects your lack of understanding and your lack of empathy.

Karla I don't think you have to change your activities, just be smart about it.  My LE therapist takes the approach that if "something will complete your life" she won't say don't do it; she'll just work with me to do it as safely as possible and she told me to always listen to my body and adapt accordingly.  I'm glad you are seeing an LE therapist.  Maybe she will fit you with a compression sleeve and gauntlet.  When I visit my daughter every summer at her overnight camp, and they invite the parents to go out in the canoes, you bet I'm out there paddling (I'm still pretty good at it, I must say) but I always put my compression garments on first.

You might have to work some creative solutions for the backpacks.  Maybe they won't be a problem, or maybe you can shift some of the weight lower down to your waist.  My point is that a good LE therapist will work with you so you can do the things you love. 

Karla: when out in nature be sure to avoid bug bites!! They can create a heap of trouble. I use Burt's bees stinky spray and these citronella coil bracelets when I am out after dark or in wooded areas. One sketter can mess up things, because my experiecne is that it takes forever for the bite to reduce in size. and we should not itch to avoid infection!

Moogie

Karla, mosquitoes adore me.  If you are in that category, may I share that I bought a mosquito suit online for about $25 which covers me from head to toe.  It's hot and ugly but it works and you don't have to use poisons on your body to keep them at bay.   Since the hood that comes with the suit is meant to go over a baseball hot, I also bought one that covers a full brim hat.  Works great and is more comfortable since it keeps the netting further away from my face.