Risk after SNB/ Lillie Shockney gets it wrong

kane744 · June 2010

Bless you, Kira. What would we do without you.

kira66715 · June 2010

Thank you Kane, what would I do without everyone on this thread?

After I wrote the response, I also realized that Binney is a true expert, she's received awards from the NLN and is a professional writer, and could greatly enhance the information on this site.

Thanks for your kind words, they mean so much. And your great attitude that helps me as I struggle to keep it all in perspective.

Kira

cs7777 · June 2010

Hi all, This seems like the best place to post this because it's about education about LE. If anyone can recommend how I might follow up about this (if you agree) please let me know. To get to the point...I'd like to take issue with the first 2 sentences (after the At a Glance summary) of the main page on LE prevention. It states: "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." While both sentences are literally correct, the way its written implies that if you didn't have a radical mastectomy that you don't really need to worry about this. Given the terrible toll LE takes in the BC community, this seems like an inappropriate message to even imply. While I recognize we don't want fear-mongering either, it seems like these points could be made differently to eliminate that implication. For example, "Current methods of breast cancer treatment lower the risk of developing lymphedema, however, the risk is still real. In addition, if you had a radical mastectomy or other treatments many years ago, you are still be at risk for the condition". I see that the moderators are reading this thread and say there's some modification of the LE prevention pages underway. How to make these suggestions to BCO writers?

Regarding the quoting of % of women who get LE, I would like to point out that all these numbers need a time frame attached. E.g., 5% within one year post-surgery. W/o the timeframe the data aren't very helpful, since, for instance, a 5% incidence in one year post surgery is a much greater worry than a 5% incidence in 20 years post surgery. I'm really really impressed by the depth of knowledge of many participants in these LE threads and I'm truly not trying to nitpick, I just point this out because everyone can understand the data will be much more understandable if the timeframes are attached. Thanks for listening.

Regards to all, CS

Member_of_the_Club · June 2010

Do we know how much the incidence of LE has been lowered since they started using SNB? Seems like an actual number would be useful. I suspect its less than people assume, given the phrase that its gone down.

swimangel72 · June 2010

I developed stage one LE after my sentinel lymph node surgery and mx with immediate free-tram. The first symptom I experienced was the axillary web - running from my armpit down to my wrist - I couldn't lift my arm - and it was very painful. Thankfully, my oncologist recognized the syndrome and tried to help me by massage. However, even he didn't recommend an LE therapist - only thanks to bc.org was I educated about this problem and found a certified LE therpist who measured my arm and taught me how to do massage, measured me for a gauntlet and compression sleeve, and taught me preventative techniques. Fortunately I have experienced no further difficulties - but I protect this arm from all blood draws. I find it shocking that BC.org uses Lillie Shockney as an "expert" and would sign any petition asking the moderators to remove her. Thank you Binnie and Kira for all your helpful information and dedication to LE sufferers everywhere!

kira66715 · June 2010

CS, Thank you for reading the lymphedema pages on bc.org and pointing that out. I haven't looked at them, as I didn't find them helpful. Binney has told me that many lymphedema experts find the lymphedema information on bc.org to be very out of date and inaccurate.

I REALLY hope that they retitle this thread to include chest/trunk/breast lymphedema--it's not just arms, the entire quadrant is affected.

I'm working on getting statistics on lymphedema and time frames, the difficulty is that there is no one definition of lymphedema, and very few studies folllow women long term: however, Jane Armer has been following women, 250, for up to 8 years and we cited an her earlier publication in Journal of Lymphology, where she found the incidence to be around 41% using perometry and surveys, there was an article she published in 2004 looking just at sentinel node biopsy, and the incidence was 22% in a small group of women. She will be publishing her longer term follow up this year, I believe in Cancer, and will sort out lymphedema by SNB. There is an article in the literature, which just looked at other studies (and Dr. Armer has shown that other studies found between zero and 90%) and came up with the 7% figure that is quoted so much. I believe it was by McLaughlin.

Until we have a "gold standard" definition of lymphedema, it will always vary. The highest rate that Jane Armer found was the 2 cm diference--what she did was if a woman ever had a 2 cm difference at any one point during measurements, she was counted as LE: that was 91% of the women she followed, from diagnosis, and for the next 8 years.

I had found one article that looked at ALND, and found that after 20 years, 50% of women had LE, with the vast majority getting it in the first few years, and then a few percent every year.

When I met with Jane Armer, I told her how much I admire her LE handout for Live Strong, and she told me she was re-writing it, as it's a couple of years old. That's high standards. I hope bc.org adopts those standards for their LE pages.

Swimangel, the moderators have made it clear that they consider Ms. Shockney a valued and respected expert.

I will work on trying to get as many facts as possible about incidence/prevelance and time frame.

There was a recent BMJ, about a Spanish study, where all women got early intervention and they found it prevented LE--except for the women with extensive axillary web.

This thread has shown me the depth of the knowledge of the women who post here, and their concern for each other and other women who are at risk.

I do hope, ultimately, it makes a difference.

CS, I should go read the bc.org info on LE...

Kira

kira66715 · June 2010

CS,

I read the overall page on LE, and it seemed okay:

http://www.breastcancer.org/treatment/side_effects/lymphedema.jsp

But then I searched for the paragraph that you quoted, and found it:

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. Prevention is very much in your best interest. Even the safest and most effective therapy may only delay the condition or keep it from worsening. Immediate care is essential with any trauma or infection.

http://www.breastcancer.org/tips/lymphedema/avoid.jsp

That whole section seems to be cut and pasted together: they say they got the material from the Living Beyond Breast Cancer info (which Dr. Weiss also sponsors) and they did put out a new handout about a year ago.

Here's another disjointed paragraph under treatment:

Sleeves and bandages each have pros and cons. The sleeves are easier to apply, and you can use them comfortably during your daily activities. But they can be expensive, and they generally provide only enough support to keep swelling from getting worse, not enough to reduce it. The bandages are more bulky and cumbersome, and they take longer to apply, but they may be more effective.

Editorial comment here: pros and cons??? They are for different purposes: bandages reduce volume and compression garments maintain volume.

http://www.breastcancer.org/tips/lymphedema/managing/sleeves.jsp

Under exercise, there is a quote from Saksia Thadiens, head of NLN about swimming, and a "meet the experts" link, and then she's not listed.

I actually heard a lecture from a PT at McGill about aquatic therapy for LE, and she was very specific about how to work in the water to treat LE, what she found was that doing the specific exercises weekly, women benefitted in the short term, but no long term benefit was seen (women lost up to 200cc of volume each session, but only did it once a week). Based on her explanations of how water pressure impacts our bodies, she wanted women to move in very specific ways to work "proximal to distal"

Aqualymphatic exercise as an alternative therapy for lymphedema management following breast cancer: a randomized controlled pilot study

Marie-Ève Letellier, Anna Towers and Robin Cohen

Funded by a Canadian Cancer Society Feasibility Grant, 2005-2008

http://www.ncbi.nlm.nih.gov/pubmed/19495810

So, my quick read through of the LE information on this site is that the overview is okay, but the the remainder seems like multiple authors were involved, and needs updating and clarification.

Thanks CS for alerting us.

Kira

Member_of_the_Club · June 2010

Everyone is being gracious towards the moderators because they do us a great service and they did take our concerns seriously but I am really bothered by their post. First, it makes it seem like there is no science on the subject of LE. Granted, there isn't enough science, but there is some and this isn't just an issue of various experts' opinions and gut feelings.

Second, the whole quality of life thing can be a lazy way out. Avoiding blood drawers on the affected arm after a SNB really isn't a quality of life issue, unless neither arm is available. (I know bc.org agrees with this recommendation, but their "expert" does not). And of course, LE is a huge quality of life issue. So it seems like a no-brainer. But Ms. Shockney thinks this will cause women too much anxiety (incredibly patronizing, I might add). This is really, truly not an example of experts disagreeing, this is an example of one expert stubbornly putting her fingers in her ears and chanting "la la la I can't HEAR you . . ."

Suzybelle · June 2010

Member, you put into words exactly what I've been feeling since I read their response. Thank you for doing such a good job of verbalizing my thoughts as well.

faithandfifty · June 2010

So glad to read that I am not the only one.

I am so new to this LE universe and my bewilderment is quickly turning to a cloud of depression.... brought on by my painful wait for answers.

Moderators. I am very grateful for your further inquiry into the world of LE. I have been writing a personal response in my head ever since I read your most recent post here..... I will work to articulate it into actual words and send via the PM route.

cs7777 · June 2010

Hi Kira, Thanks so much for your replies. I guess there might be several pages on BCO about prevention but the one I was looking at was http://www.breastcancer.org/lymphedema_avoid.html, which is the one that is linked to in the 4th thread in teh "LE after Surgery" forum that is locked in that location. I figured that must be the "main" one since it was locked into such a prominent location and will be the place where newbies looking for info would likely go. Anyway, the page and text you note is almost identical to what is on this lymphedema_avoid.html page, and you got the jist of my concern. Since I wrote the other day I perused the step up speak out website page on prevention and found it to be very helpful, and more comprehensive than the BCO one. I will now send others to the step up speak out website when needed rather than the BCO page, as it seems more comprehensive. Thanks to you and whoever else here (binney?) who created that site, there's so much good info there. Interestingly (but sadly), the info my docs have discussed with me matches quite closely what's on BCO (the do's and don'ts list, that is, not their introductory info). I'm glad to have found the suso site that's more comprehensive.

Regarding the units of prevelance data that I brought up, thanks for your input on that. To be clear, I wasn't asking you to give me the stats, just suggesting that we need to be careful to include timeframes since that's an important part of the data. However, your comments about what's measured is just as important. (I'm a biomedical reseaercher and read literature all the time, so I'm familiar with the need to distinguish such details.) After reading your note I realize that any compilation of data must include the measurement method, the cutoff/criteria for LE/no LE, as well as the time frame (possibly multiple time points if they were taken), and of course any relevant patient characteristics for the study cohort (e.g. SNB vs ALND etc). The data just aren't understandable otherwise, nor are they comparable from study-to-study as you say, but they are what they are. If you're actively trying to survey the available data on prevelance and can use some help let me know (we can PM about it) as I have some time right now and might be able to help.

Thanks again -

CS

OneBadBoob · June 2010

Am I missing something, or is there actually no mention at all of breast/chest/truncal LE?

And that is the LE that is truly on the rise since the use of SNB.

Did I miss it somewhere on the BCO site?

kira66715 · June 2010

Jane, truncal/breast LE are mentioned in the overview, but not fully explored in the detailed reviews, which contain confusing statements.

MOTC: Thank you, you said it so well. I thought it was just me.

Kira

CaSux · June 2010

Lurking for a while and am now spurred to chime in - first - thanks for this thread. It's important to out Shockney as a non-expert for so many reasons - lack of understanding on LE being only one of them.

I propose we few stop referring to Shockney as an expert and start referring to her as an "expert."

Her credentials: an RN/BS degree and an M.A.S. degree - Master of Administrative Science - she has no advanced degree in medicine, psychology or counseling. The breast center website identifies her role as Administrative Director and describes her duties as "surgical oncology and psychological supportive care needs." What she does have is experience as a breast cancer patient - which I think is not an insubstantial experience. Each of us here can call ourselves an expert of our own experiences. And so can she.

Trouble with Shockney's "expertise" is she seems to define her own experience as the ideal - the gold standard - the experience which we should all be striving to attain. Additionally, her role at Hopkins, which again, is ADMINISTRATIVE, and her stated education, does not appear to qualify her to offer psychological counseling, which requires extensive advanced education and a LICENSE TO PRACTICE.

No where is this more harmful than in her approach to "psychological supportive care needs." She is on the record - in her books and writings with providing, to my admittedly layman's eye, actually PSYCHOLOGICALLY HARMFUL medical advice.

Here's an example: "if you take a fatalistic attitude though you can doom yourself so STOP DOING THAT." Shockney appears to assume that telling a person to STOP DOING THAT is an appropriate therapeutic response to what may likely be clinical depression.

Here's another example: "sounds like better communication needs to happen between you and your family. having left them out they may still be feeling bitter …you SHOULD BE FEELING OPTIMISTICALLY and not be down in the dumbs (her typo, not mine) having become a survivor of this disease"

The patient's question appeared to me to be a cry for help, she sounded defeated and in tremendous psychological pain - and Shockney's response appeared to me to BLAME THE PATIENT for not being POSITIVE ENOUGH. NOWHERE DOES SHE SUGGEST THAT THE PATIENT SEEK COUNSELING!!!!

This is serious stuff. I realize that the Hopkins 'Ask an "Expert"' site includes a disclaimer about not providing medical advice, yada, yada, yada - but so much of what the "expert" writes comes across as medical advice AND A BLATANT MARKETING OF HOPKINS BREAST CENTER - and I would say that psychological harm is some of the worst that can be inflicted on a person. No visible scarring - but the most difficult to overcome in many cases.

Notably - there are no easy links to information about support groups or counseling on the Hopkins Breast Center website. Before they redesigned it the link for psychological counseling took you to the home page of the Kimmel Cancer Center - which had no easy to find links pointing to psychological counseling or support. I don't know if the re-design has corrected this - I have no desire to waste any more time on that useless website. WHY ARE THERE NO SUPPORT GROUPS AT HOPKINS???

WHAT IS HOPKINS DOING WITH THE AVON FOUNDATION GRANTS THAT ARE SUPPOSED TO PROVIDE COMMUNITY OUTREACH & SUPPORT SERVICES?

WHY DOES SHOCKNEY NOT DISCLOSE HER CONFLICTS OF INTEREST? She receives compensation, speaker fees and grants from device makers and drug companies - all of which she schills for.

Sorry to highjack the LE topic to rage on this - but it's been brewing a long time.

kira66715 · June 2010

CaSux,

Thank you for the additional information: the belief that a "bad attitude" will influence the course of your disease has been disproven, despite its popularity.

Barbara Ehrenreich, a breast cancer survivor, has published "Bright Sided" an exploration of the use of "positive thinking" in medicine, business and finance, and she writes that being told to think positively is actually a lack of empathy.

It's often very hard to tease out conflicts of interest, I follow a blog: healthcarerenewal, where they find all sorts of conflicts, at all levels,

For some reason, my copy feature is not working on this computer, but if you search the site for "positive thinking" you will come up with Marissa Weiss advising not to give into the tyranny of positive thinking, but to be realistic.

Thank you for you post.

Kira

Binney4 · June 2010

MOTC, Suzie and Faith, I agree with you on the BC.ORG response. There is clear evidence to refute Lillie's mere opinions, and I firmly believe women facing breast cancer deserve to know the available facts and not be misled by "advise" from a source they (blindly!) trust. But she is not spouting this stuff on BC.ORG, so I can also understand their unwillingness to take out after something they have no control over. I'll be really grateful if BC.ORG updates their own LE information pages and corrects the implications they make (like those CS points out). I don't see how they can do that well without consulting with real experts in lymphology, so I sincerely hope they do that. As too many of us have seen, even a whole team of our cancer doctors can go wrong on LE information, because it's really not on their radar. When they assume that they know about it, they can be downright dangerous.

Which appears to leave Lillie to continue spouting potentially dangerous misinformation about LE on the JH website, without so much as getting her hands slapped by BC.ORG. I honestly believe that even JH is powerless to stop her UNLESS we keep on making them aware of our concerns. As patients, we are powerful here -- several people have mentioned the marketing aspect of the JH "expert" boards, so it's possible that if JH begins to believe the message being sent from there is negative, rather than positive, the marketing motive may be enough to bring it to an end. Money talks, and in this case, patients talk! For myself, I would like to see the entire achive of LE "information" removed from that site, giving Lillie (or hopefully some real LE expert!) a chance to start over new, without the missteps. I just want it fixed, not Lillie's head on a platter.

CaSux, I don't see where you've "hijacked" anything here, and I appreciate your post. But I'm really sorry for the obvious pain you've suffered, and I hope that in bringing these concerns to the light you'll find some forward movement.

I promised to let everyone know if there were responses to our other emails -- to Johns Hopkins and to Avon. So far we have received no word at all from Johns Hopkins, but I doubt that means they're ignoring us entirely. Laughing Avon, who is the sponsor of the JH website in question, HAS responded, and apologized to us for the delay which was a result of personal emergencies. They have assured us they will be in contact with us this week after they've had a few days to look into it. I acturally trust them to do that. Stay tuned!

I'm bowled over by all of you, my Sisters. This thread has been an incredible experience for me, and I can't express what it means to feel so much less alone with this crummy lymphedema and the battles it takes to get care -- even to hold my head high. THANK YOU, all of you.

Really big hugs,
Binney

Binney4 · June 2010

MOTC, Suzie and Faith, I agree with you on the BC.ORG response. There is clear evidence to refute Lillie's mere opinions, and I firmly believe women facing breast cancer deserve to know the available facts and not be misled by "advise" from a source they (blindly!) trust. But she is not spouting this stuff on BC.ORG, so I can also understand their unwillingness to take out after something they have no control over. I'll be really grateful if BC.ORG updates their own LE information pages and corrects the implications they make (like those CS points out). I don't see how they can do that well without consulting with real experts in lymphology, so I sincerely hope they do that. As too many of us have seen, even a whole team of our cancer doctors can go wrong on LE information, because it's really not on their radar.

Which appears to leave Lillie to continue spouting potentially dangerous misinformation about LE on the JH website, without so much as getting her hands slapped by BC.ORG. As patients, we are powerful here -- several people have mentioned the marketing aspect of the JH "expert" boards, and we're the targeted consumers. So it's possible that if JH begins to believe the message being sent is negative, the marketing motive may be enough to bring it to an end. For myself, I would like to see the entire achive of LE "information" removed from that site, giving Lillie (or hopefully some real LE expert!) a chance to start over new, without the missteps. I just want it fixed, not Lillie's head on a platter.

CaSux, I don't see where you've "hijacked" anything here, and I appreciate your post. But I'm really sorry for the obvious pain you've suffered, and I hope that in bringing these concerns to the light you've helped to create some forward movement.

I'm bowled over by all of you, my Sisters. This thread has been an incredible experience for me, and I can't express what it means to feel so much less alone with this crummy lymphedema and the battles it takes to get care -- even to hold my head high. THANK YOU, all of you.

To the mods and BC.ORG administrators, thank you for hearing us and not removing our comments. Please know we'd all be happy to help in any way we can. We really appreciate this site.

Really big hugs,
Binney

moogie · June 2010

The more I ponder all these issues, the more I think we need to request MORE RESEARCH. I went on a search to see if I could enter any clinical trials or studies for LE: a pitiful number are out there. While many of us have LE as a side effect of treatment in one form or another, there are so many people who have primary LE. I was just in Walmart few weeks ago and saw a very young woman, under 21 possibly, having such a time walking, with a truly remarkable case of lower extremity LE.

If we can make our struggle known, the VOICES OF LYMPHEDEMA, I bet somebody out there would realize our numbers are significant. Visibility = MONEY. Recently I saw a photographer's portraits of women who had mastectomy and the images were so powerful. Maybe somebody needs to showcase Lymphgals with this kind of impact. If the world knew what we deal with, I really believe change would occur. right now, we are kind of invisible...

Brainstorm ladies! A great idea is always one cup of coffee away...( and one big square of dark chocolate!!!)

Moogie

kira66715 · June 2010

Binney, welcome back!

I think this thread has shown what an amazing resource we are.

Our stories would be very helpful iin educating women at risk, and their providers, about lymphedema.

I agree with Binney and everyone who posted that I really hope bc.org utilizes experts in lymphology when they re-write their content on lymphedema.

And that "experts" who offer medical advice, that can have life long consequences, need to fully understand the subject, and while personal experience is powerful, it does not represent universal facts.

Electra Paskett PhD, researcher and woman with LE has said that lymphedema is understudied:

Here's the abstract from her 2008 article in the Journal "Breast"

:Lymphedema: Knowledge, Treatment, and Impact Among Breast Cancer Survivors
Electra D. Paskett, PhD and Nancy Stark, RN, PhD
Department of Public Health Sciences, Wake Forest University School of Medicine, Winston-Salem, North Carolina
Address correspondence and reprint requests to: Electra D. Paskett, PhD, Department of Public Health Sciences, Medical Center Boulevard, Winston-Salem, NC 27157, U.S.A., or e-mail: epaskett@wfubmc.edu
KEYWORDS
breast cancer • cancer treatment • lymphedema • quality of life

ABSTRACT
Abstract: Lymphedema is an understudied consequence of surgery for breast cancer. It is estimated that as many as 60% of breast cancer survivors report symptoms of lymphedema. Few studies have examined the impact of lymphedema on the lives of women with breast cancer. The goal of this pilot study was to identify knowledge about, treatment received for, and the effect of lymphedema among a group of breast cancer survivors and physicians. Forty women with lymphedema and 10 physicians who treat breast cancer patients participated. Overall, women knew little to nothing about lymphedema before they developed it. After diagnosis, the primary source of information about lymphedema was a doctor or physical therapist. The majority of women received compressive garment therapy (75%), 46.9% received mechanical compressive therapy, 26% received bandaging, and 22% received physical therapy. More than half (55%) reported that clothing and appearance were affected by their condition and 48% reported that routine daily activities were impaired. Hot weather (58%) and regular arm use (40%) were reported to exacerbate the swelling. Most physicians reported that they did not routinely counsel women or provide written information on lymphedema prevention to their patients, and the extent to which women's daily living was affected by the condition was not always recognized. These findings have implications for interventions aimed at educating women and providers about lymphedema.

http://www3.interscience.wiley.com/journal/120710623/abstract?CRETRY=1&SRETRY=0

We are a powerful resource, and we are all experts of our own experience and as a group we are looking for accurate information. We value quality of life, that's why we want to reduce the risk both to ourselves and every other person who is at risk, of getting lymphedema. We want everyone to know how to reduce that risk and to then use their personal judgement, AFTER they're fully and accurately informed.

Kira

OneBadBoob · June 2010

Indeed we need more research!

Please everyone!!

Dr. Mei Fu is Dr. Jane Armore's protege! And we are fortunate to have her doing a study on LE and Breast Cancer Symptom Experience and Aftereffects--

Please take part in our survey at http://survey.constantcontact.com/survey/a07e2sl6jfhg6p59caw/a01bdga8cxtm8/greeting

We are all asking for researchers to do more research, but unless and untill we all take part in the research, it will be useless.

Please participate!

Any questions, please ask us at info@stepup-speakout.org

We currently have 300+ participants, but would like that number to be 600+!!

ktym · June 2010

OBB, will do that right now thanks.

Just had to say one more time thanks to you, Kira, Binney (and forgive me for anyone I have missed) for the tremendous support and information you have given me on this topic.

Anyone had trouble getting through airport security with their lymphedema sleeve on?

OneBadBoob · June 2010

Kmmd, I fly a lot, and have had very few, but a few, problems.

One problem I have had is with my sleeves and gloves. TSA asked me if they were burn gloves/sleeves and I said no, they were lymyphedema sleeves/gloves, She asked me if they could be easily removed, and if they went all the way up my arms, I said no, they cannot be easily removed, they go all the way up to my arm pits, but you can do a "body check" of me privately if you like.

She scanned them for explosives and there was no problem.

Another time, I turned on the metal detector with my metal "hooks and eyes' on my compression vest. They were very understanding, and did a "pat down" privately--and I explained to them what the compression vest was all about, and what the "pad" in my cleavage was for. They were quite kind and wonderful about it.

Now, I always tell them before I go through the scanner if it goes off, please give me a private body check.

Edited to say that the last half dozen flights I have been on out of JFK and LGA, they have a "special needs" line at the TSA, where people with more fluids than allowed (babies' formula) or replaced joints, etc.can go through, and they have really been wonderful and understanding!

ktym · June 2010

Thanks OBB, a special needs line everywhere sure would be nice. (probably make all the other passengers happier too)

Member_of_the_Club · June 2010

I have flown quite a few times with both sleeve and glove and was only pulled aside for extra scrutiny once, and it only took a few minutes.

missrwe · June 2010

Let's keep this thread up in the list - so people looking for good information on LE know not to listen to Lillie. I'm sure they're waiting for this to die down and fade away. Let's not let it.

OneBadBoob · June 2010

BUMP, BUMP, BUMP!!!

I find it interesting that certain posts from the Johns Hopkins site, regarding lymphedema, with Lillie being the expert, have been removed.

Binney4 · June 2010

Not enough of them, though, Jane. I'd still like to see the archives on lymphedema removed from the Johns Hopkins site and give Lillie -- or preferably, a real lymphedema expert -- a fresh start. It's hard to combat all the layered misinformation that's been gathered there for so long, as desperate women looking for information about their swollen arms still go looking through the archives for answers. And I think if they took all that down we'd be able to let it rest.

Thanks, all, for all the caring here for our Sisters who need LE help! Smile
Binney

kira66715 · June 2010

I do agree that this thread has created some great knowledge and also exposed the fact that women have been offered "expert" opinion that could be harmful.

I never expected any formal retractration.

Binney, I'd like to see the archives erased as well.

I think it exposes the issue of expert advice vs. marketing, and just who is a self-proclaimed expert? If having bc makes you and expert, than we all are. I believe that having LE makes us experts on the condition.

"Ask an Expert" implies that you are getting accurate, expert advice. The reality has been that the advice has really been opinions, and although LE experts have proven to be very generous with their time and expertise, they don't seem to have been consulted in this situation.

Kira

lvtwoqlt · June 2010

One small step for us . . . . We will accept all the small steps we can get. although I do agree that if you are asking an 'expert' you should expect expert advice.

Sheila

hollyann · June 2010

OBB, tried to take the survey and it said I had already taken the survey......

I love this new thread......I had Axillary Web Syndrome and am still having problems with pain and swelling in the back of my "bad" arm.......My PT says i don't have LE, but I don't agree...i am going to see if my BS will send me to a new PT who is a true expert on this.........

Risk after SNB/ Lillie Shockney gets it wrong

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