Risk after SNB/ Lillie Shockney gets it wrong
Comments
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MOTC, I agree a petition would be helpful, but Kira and I did all our emailing over the weekend, so I'd like to give Dr. Tsangaris and bc.org and Avon (whom we also emailed) some time to respond first. (I want to point out that Avon works with Johns Hopkins, so I alerted them to this problem, but they ALSO support important lymphedema research -- THANK YOU, AVON!!!)
Then, if we're petitioning bc.org, perhaps we should include a mandate to update the LE information on their patient information pages -- which is flawed and outdated -- preferably by someone actually in the LE field -- Jane Armer (researcer), Dr. Kathleen Francis (lymphologist), Jodi Winicour (PT and therapist trainer with a specialty in post-bc LE) come to mind.Natsfan and Missrwe, thank you for your input on this. I think we tend to confuse "excellent cancer center" with "excellent follow-up care" -- they are clearly not the same thing. As long as doctors are not taught anything (or way too little) about LE no cancer center (which is staffed, after all, by these LE-undertrained doctors) is going to come up with improvements on their own. So anything you (and all of us) can do to alert them to our need (and our determination to have it met) will do wonders for grabbing their attention.
But it won't be an easy task. Lymphedema has been shucked under the carpet for a very long time, and despite the numbers of people suffering from it, no patient movement has ever been launched. UNTIL NOW!
For many years Pat O'Connor, the founder of LymphedemaPeople.com and a lifetime sufferer of primary (genetic) lymphedema, has worked to make people with lymphedema aware that they are not alone, and that there is treatment available. (Primary lymphers typically wait decades for a proper diagnosis, so compared to them we're way out ahead!
) People with ymphedema -- because it is disfiguring and because doctors have so long disregarded it -- have been hiding out, many not willing to leave their homes, others so wearied with trying to get help that they are completely shut down. They have been in no shape to launch an awareness campaign or to insist that misinformation and ignorance in the medical community come to an end. On the professional side, Saskia Thiadens founded the National Lymphedema Network, whose primary contribution has been (and still is) reaching out to the medical community to educate and to support those working in therapy and research. Their International Conference (coming up in September in Orlando) brings together lymphedema professionals from all over the world to share ideas, conduct workshops and present new research. What the organization has lacked all these years is any movement among lymphedema patients to advocate for themselves.
In other words, I do think we're in a good place RIGHT NOW to make our voices heard. As Kane has pointed out elsewhere, we're standing on the shoulders of the women before us who made breast cancer itself into a cause that everyone is now aware of and that reaps gazillions every year in research funding.
As we move forward with this, let's keep in mind that bc-related lymphedema is only one part of the picture. Our sisters with gynecologic cancers (and our men-folk with prostate cancer), as well as everyone with head and neck cancers and melanoma are at risk, and they receive less help than we do. Those with Primary Lymphedema include new-borns, youngsters, teens, young adults, and the elderly. Their voices are never heard, and we need to keep them with us as we make progress toward awareness.
So, all suggestions welcome. We'll post here as soon as we hear from any of our emails.
Wow!
Binney -
Okay, so I'm absolutely no good with math, but last night I tried to work this out. Somebody with better skills, please correct me if I'm wrong.
Lillie claims that out of 3,800 women who have had an SNB at Johns Hopkins, only one has ever developed lymphedema. That means their LE rate following SNB is less than .03%. Elsewhere in the world, according to published research, the rate is somewhere between almost 7% and 41%. If we compare these two figures, using the lowest (7%) rate reported, that means patients everywhere but Johns Hopkins have 260 times the risk of developing LE after an SNB than do patients at that venerable institution.
Ladies, that is either an outright miracle, or it's absolute rubbish. If it is a miracle, than Johns Hopkins owes ALL OF US the secret information about LE prevention that they are hoarding from the rest of the world. And if it is rubbish then Lillie needs to clean up her act immediately.
We are all suffering from a SERIOUS medical condition, Lillie, and the games you are playing with us are NOT ACCEPTABLE.
And here's the frosting on the cake, posted this morning on Lillie's "Expert" board:PATIENT QUESTION:
5/23/2010 What went wrong with that one patient out of 3,800 who developed lymphedema?JHU's BREAST CENTER REPLY:
5/23/2010 fractured her armFrankly, I'm not amused.
Binney -
Not amused Binney? I think I am appalled!!!!
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But we already know its rubbish from the e-mail Nats got from the Patient Educator (I'm assuming this is a woman who went through treatment herself at JHU and then had some training to give support to subsequent patients). Her arm feels heavy when she gardens, but it isn't LE, of course. What else are they defining away? And do they have a system for even keeping track, cause if they don't then every time a patient presents with symptoms they won't register that it is happening.
Ooooh, frustrating. I didn't realize you had contacted them so recently. Of course, we should give them time to respond.
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I am a patient of the Breast Center. Never once has anyone there measured my arm (before or after surgery) or asked me ONE SINGLE QUESTION about lymphedema - like "do you experience any of the following symptoms…"
If their records of 1 in 3,800 SNB patients is based on never, ever asking their patients about this condition, then it's no wonder that their stats are so low. Heads are in the sand at the Hopkins Avon Breast Center. It was never once mentioned to me.
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The Lockness Monster, Big Foot, Vampires & the Abominable Snowman, Alien landings and Elvis at the mall......... just where exactly does LE fit on the spectrum?
As a person newly instructed to wear a compression sleeve & gauntlet -- yet awaiting an official diagnosis of LE, but going to PT several times a week to recieve Kinesio taping and MLD -- I'm really in a quandry.
My surgeon has not dx the swelling in my arm, and went as far as to say that it would be an 'impossibility' for me to contract LE..... consequently my PCP has referred me to a new BC surgeon. (He's fired.)
I still await this new appointment. It is thru a different hospital all together. It will be interesting to see what a new pair of eyes (who did not perform the surgery) has to say about the matter.
In the mean time, I can report that the arm that is currently attatched to my body does not feel like it is mine. Having known my previous right arm for over 53 years, I feel in the cat-bird's seat for saying this one is not mine.
It is so utterly deplorable to read what is necessary from the patients in order that we educate the physicians who care for us. On the flip side, I am completely in awe of those of you who are amassing the findings of the studies that will bring light to this condition.
I have thought all day about an analogy. None has presented itself..... the closest that I can construct, would be for an expert to say that "I didn't develop chronic depression following my BILAT surgery -- so therefore you shouldn't either. In fact I just want you to go away & be happy."
At the very least we need to have BCO thouroughly review all LE info here. Period.
Consider my name signed on the petition.
Still shaking my head in utter disbelief.
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I've been shaking my head ever since I began complaining to my cancer drs that something wasn't right, that my breast was extremely painful, that my arm was swelling, that my hand was swelling and they continued to deny that anything was wrong. I wouldn't shut up, I was the thorn in their sides. WE must never shut up and take their ill-informed words as gold just because they are doctors. WE KNOW when something is wrong with our bodies. I've gotten an apology from my medical oncologist. Am expecting the same from my radiology oncologist when I see her next week. Am having a painful breast day cause I made potato salad and deviled eggs yesterday. Or maybe I did something else I'm unaware of. Also, it's hot and humid and I hate the sleeve and gauntlet. And my thumb web is still sore. I'm in a bad mood today but tomorrow will be better! Gotta go massage. Faith and 50--I fired my BCS too!! Hopefully, I'll not need a replacement.
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Well, in an earlier post I questioned the role of ego in the lack of accurate responses on the Hopkins site. Seems to be fueled by hubris.
Would love to hear from ladies who got surgery at Hopkins and developed LE ..because I know they are out there.
I got prevention information IMMEDIATELY AFTER SURGERY AT DUKE. IMMEDIATELY. So Hopkins is clearly not so cutting edge if they are waiting for puffy elbows to develop before informing patients of proper self-care and protection.
Moogie
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Moogie, It's hard to understand the motivation to deny LE:
Hubris, shame, ignorance.
I believe, from the cavalier, at best, and dangerous, at worst, and flippant and unconcerned as a constant, replies from Lillie that even if a woman developed a swollen elbow she would deny its existence--as LE.
Binney is concerned that this thread will be taken down by bc.org as seditious or somehow violating their rules. Isn't that horrible?
We're reporting that we have had to fight to get the care we deserve and that despite polite attempts at contacting Johns Hopkins, we've been met with deadening silence.
Shouldn't the goal be the best care of patients?
It's all about Survivorship right now, and the mission of the Lance Armstrong Survivorship Clinic at Dana Farber states that the goal is to manage long term side effects of treatment--specifically LE, yet the medical director--from Hopkins--has proven pleasant but uninformed and clearly views LE as low priority (if he believes Lillie, the incidence is <!%, so why should he care?)
You don't see Duke out there disseminating misinformation as expert advice.
Kira
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Hi All,
We've been reading this thread, and thank Binney for contacting us directly. I've passed this along to our team. We are hearing your concerns, and would appreciate a little time to evaluate your points and concerns.
Many thanks,
Melissa and the Breastcancer.org Team
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Melissa and all, thank you so much.
Binney
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Melissa and team, Thank you.
I would like to point out something that struck me as I re-read the email that NatsFan received: they do NOT recommend compression for air travel with SNB.
Mei Fu PhD from NYU is doing a current research study, and Jane/OneBadBoob, is the #188 patient in the study to develop lymphedema after flying without compression garments.
There is a NLN position paper on air travel for women at risk.
At the very least, women should be informed of the risk and have the appropriate garments to use if needed.
As there is no gold standard for diagnosing lymphedema, and symptom surveys are frequently used, the patient educator who emailed NatsFan would, by symptoms, have lymphedema. Yet she is unaware of that fact and advocates no risk reduction measures or evaluation.
A recent position paper by Andrea Cheville MD of Mayo Clinic discussed how lymphedema is a dynamic and progressive process. Early identification, proper treatment are very important in preventing progression. The biggest risk for developing severe lyphedema, in a paper published by Cheville, is the presence of mild lymphedema.
I've cited my oncology text about the deplorable yet all to common practice of therapeutic nihlism before, and will write it again:
"Therapeutic nihilism (i.e. no treatment at all) is deplorable, although common. The fact that the average clinician is ill prepared to recognize early stages of lymphedema must be remedied, because the sooner the treatment is started, the less treatment is required to prevent further progression."
Thank you for reviewing this thread. We all stand ready to assist you with obtaining current and accurate information on lymphedema and its treatment.
Kira
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Just as an FYI - this is the email I originally sent asking for info getting fitted and other LE info. This was sent in October of 08. I think it was a pretty comprehensive request for help.
"You've been very nice to respond to my questions all along, and of course I have a few more. To refresh your memory, I had a bilat mastectomy with full axillary node dissection on January 31st, and just had my DIEP reconstruction on 10/9.
I'm interested in how to get fitted for a compression sleeve. I will be flying to LA to visit the in-laws this Christmas, and have never had a lymphedema evaluation nor have I been fitted for a compression sleeve. From what I've read, it's advisable for me to get a sleeve to help prevent lymphedema. I don't seem have lymphedema now (although I did develop some cording) but obviously I'm at risk and would like to get some personal guidance on prevention.
I had my bilat DIEP on 10/9 and am still home recovering (doing a bit of work email). I had a visit with the Hopkins physical therapy dept prior to my surgery to get exercises, and from they said, they thought that there's some program in the Breast Center where I can get fitted with a sleeve.
Can you give me more info on any lymphedema programs the Breast Center might have and how I can get an evaluation and a sleeve? If that's not offered there, do you have any other suggestions for me?"
Knowing what I know now, and re-reading this sequence of emails, I'm really getting more and more upset with the lack of LE education I got, especially since I made a direct request for information and education.
Edited to add: It was 5 months after this email exchange, and after I made the cross-country round-trip flight, that I was diagnosed with LE. Could it have been prevented had I received proper education? I guess we'll never know, but the possibility is haunting.
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If a surgeon or other doctor were to develop lymphedema themselves, they'd definitely acknowledge it's existence. I think too few among them have experienced it firsthand, so it's easy to be dismissive or to discount LE's difficulites.
My dh changed phone/tv/internet plans on us yesterday - for speed and quality of picture. I was very bugged because this means I have to change my email address - again. His email is work related and the kids are gmails, but I have used the one provided by previous provider, and now I need to change. I was extremely angry, since I was not consulted about it and the change effects me very personally. Dh then got mad that it was such a big deal to me. Same point: it had no impact on HIS email status, so it was not a big deal to him at all. His argument was if it wasn't a big deal to him, why should it be such a big deal to me? (obviously bad logic)
It really does take someone walking in our shoes to get it - either in the form of a therapist or experiencing LE personally. Otherwise, it may seem more like, "What's all the drama about a little bit of swelling?" And of course, we feel it quite differently than "a little bit of swelling". And with the heat I was out in yesterday, I am having way more than "a little bit of swelling" and feeling rather grumpy about it. Today I'm ready to take on any doc!!
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Agreed completely: I used to work for this brilliant researcher, and he could never "get" how personal experience trumped statistics.
The email story is an excellent analogy of how a change that doesn't personally impact you appears insignificant.
There is a great MD at Vermont, Patti O'Brien, who developed LE and researches it, Electra Paskett is a PhD who has it and researches it.
We were in contact with a thoracic surgeon who developed a compression sleeve for his wife, an ob/gyn.
In the local medical community around me, I only know of one other provider who has it, and because of shame, they tend to stay quiet about it.
I work in medicine, and knew nothing about LE (I sent one woman with primary LE to the vascular surgeon who told us there was no treatment, and that was the sum of my knowledge), knew enough to worry about it before surgery, and getting it rocked my world and now in this weird twist of fate I started a new job in radiation oncology--a year ago-- (I was trained in primary care) and I see and treat LE every day.
When I returned from medical leave, struggling with dealing with my LE, I was abruptly fired from the primary care practice where I worked, for low productivity....In retrospect, a good thing, devastating at the time.
The response I got from my breast surgeon was anger and dismissal, and now we share care of patients all the time, and it's a bit tense, as I fired her. She dictates that she discusses LE now, but I see her patients all the time, and she still doesn't recognize it.
Personal experience trumps statistics every time.
Kira
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Melissa and team -
Thank you for taking the time to seriously review this thread and the wealth of information it provides. Binny, Kira and the so many of the other 'swell' girls here have been a God Send for me. I have always felt that the information provided on this forum has been well researched, documented with links to the studies/information sited and explained in a manner that a non medical person can understand. Thank you for not dismissing our concerns like so many of our doctors have in our fight to be acknowledged.
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Dear Kira, Binny and all,
Kira, mine was the second of the two Johns Hopkins "Ask an expert" questions you quoted The one about hot tubs. Thank you for all your hard work - the research, the life experiences you share. I took your advice to heart and did more research myself. I will take great care when I go to Hakone in June and stay away from the really "hot" tubs. And the next time I go back to the States ( a 12 hour flight Tokyo-Chicago), I will get fitted with a "sleeve".
Thank you again
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THANK YOU BC.org TEAM,
...for looking into this matter! For many of us, this was the resource that helped us realize we needed treatment. When my swelling did not go down on its own, I went to the library, the bookstore, etc... The best one finds is a shoddy paragraph about LE in a book about Breast Cancer. But I knew something was not right. The info I got here helped me locate a dedicated LE physician, and get garments to try to control my swelling. Finding accurate information makes the difference between feeling like a helpless victim or feeling like a person who can find a strategy to take care of oneself.
We all just need help finding ways to logistically deal with this very real, very labor intensive condition---which too many medical professionals really do not want to hear about because many do not have a good answer to help us. Education can change this situation and empower us all to a better standard of care.
I Am ALWAYS happy to hear that someone did not develop LE! It is a huge pain in the rump for sure. But for many of us that do, despite the best medical care, we are not looking to point a finger at anybody for " causing " it. It is clear there are many factors, and to be simplistic, poking around in an armpit seems to be a red flag. We just want to find the best way to get treatment, find a new normal, prevent it if possible, and move forward with life!
Moogie
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Thank you, BC.org team! Just to be acknowledged literally brings tears to my eyes, same as it did when I was finally diagnosed by an le/pain specialist nearly two months ago. I'm sure our cancer doctors don't mean to ignore our plight. They just need some education.
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TokyoSing,
Thank you for sharing that you were the person who raised the hot springs question. I'm so glad we could help and that with the additional research you will take steps to protect yourself.
Have a wonderful trip and uneventful air plane flights, and per Dr. Andrea Cheville--please get hand protection to wear with the sleeve, and wear the garments before you fly to make sure they fit well and don't cause trouble. Poorly fitting compression is worse than no compression.
Be well.
Kira
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Thank you moderators for your care & concern over the issues & experiences expressed here. We need this site to be brilliant on every possible concern associated with BC.... an up to the minute resource, with the latest & best understanding.
I look forward to your thoughts after you have had time for review.
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Tokyosing, can't tell you how relieved I am to know you got the straight story here, and the right to make your own informed decision about how you deal with your risk.
THANK YOU for letting us know. May you never join our "swell" sorority! Geesh! Made my day!
Binney -
TokyoSing, I mentioned Andrea Cheville's position paper (for LymphDivas) on the use of hand compression with arm compression, here is a paragraph and a link to the site. Again, I'm so glad you posted here, and so glad you didn't just accept the "expert" advice you were given, but did more research. I agree with Binney, you made my day.
Here's from Dr. Cheveille (of Mayo Clinic)
Most women at risk for lymphedema who have not noted increased arm volume, symptoms, or other indicators of early lymphedema wear their sleeves during activities that increase lymph production. Examples include airplane travel, vigorous aerobic or resistive exercise, and repetitive activities performed in an intense fashion. It is important that women using preventative compression sleeves combine their sleeve with either a gauntlet or glove during such activities. Particular attention should be paid to constriction at the shoulder band, elbow, and wrist crease. Sometimes overlap of a gauntlet and sleeve at the wrist can cause excessive pressure.
http://lymphedivas.com/lymphedema/gauntletandsleeve/
Here's another great resource, from Jane Armer, on the Livestrong Site:
From the section at preventing lymphedema:
Avoid extreme temperature changes on the at-risk or affected arm or leg. Closely monitor temperature changes when bathing or washing dishes. Avoid saunas and hot tubs to keep affected limbs out of extreme temperatures.
http://www.kintera.org/site/c.khLXK1PxHmF/b.2660675/k.9471/Physical_Effects_Lymphedema.htm
Again, I hope you never join this "club".
Kira
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Dear Kira, Binney and all,
Thanks again for your personal advice and all the useful links to clinical research and educational sites. I am most grateful for the kind words and thoughts you have expressed. BC is terrible - (but) it is wonderful to connect with people like you.
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TokyoSing,
It is great to connect with you.
As I put together those references, it struck me that the authors: Andrea Cheville MD from Mayo Clinic, and Jane Armer PhD from Univ. of Missouri and President of the American Lymphedema Framework Project ARE experts, but neither one self-promotes like Lillie.
Her medical ethics and her information--on lymphedema--need to be reviewed. Women should not have to be protected from self-proclaimed experts.
I'm so glad the references are helpful, and I'm imagining you at these wonderful hot springs, and how beautiful it will be.
Kira
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Interesting, thanks for sharing this info.
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Thanks ladies for taking the time to share all of this because I am trying to prepare myself for surgery. I will be following this informative thread.
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Binney alerted me to this recent "expert" post: possibly Lillie heard about the risks of giving "expert" advice--it's too soon to tell, but maybe, just maybe, we made a difference here:
5/27/2010 My question is about backpacking and solo canoing after lymph node removal. I had a SNB on right (three nodes removed) and 4 nodes removed on prophylactic side (incidental). Which side should I have Blood pressure taken, blood draws or IVs? Can I safely return to backpacking? I usually carry a 38-40# pack for 5 to 7 days in the wilderness spending 6 to 8 hours with the pack on each day. Also, can I safely return to solo canoing on wilderness rivers. Usually 5-7 days of 6 to 8 hours paddling sometimes pretty continuous and I usually paddle almost always on my left. When my husband and I are not canoing or backpacking we are doing international travel and in the air for 6-12 hours. Is there any precautions I should be taking?
Replied JHU's Breast Center Reply
5/27/2010 some of the answer is going to depend on the location of these nodes. for example, the prophylactic side should have had no axillary dissection at all. so if nodes were removed check to see if they were merely nodes within the breast tissue-- probably the spence (tail) of the breast.there are mixed opinions about restrictions. some say not to worry with so few removed and others say to apply all the restrictions. make yourself an appt with a certified lymphedema therapist. this will be someone probably working in a rehab medicine center of the hospital where you had your surgery. Let her specifically advise you based on knowing your surgeon's preference and her own expertise. L
http://www.hopkinsbreastcenter.org/services/ask_expert/viewquestions.asp?id=999805610
I just came from a lymphedema conference (where I got to meet Jane Armer and ask her about her great article on the prevelance of LE--I almost asked her to autograph it) and heard again how early intervention makes all the difference.
Kira
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Kira, Binney and all,
I saw Lillie's reply on the JHU "ask an expert" site last night. I think you guys made a difference!
Thanks again for the good work!
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BRAVO KIRA AND BINNEY!!!!!
You guys are moving mountains!!!
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