lymphedema after snb
Comments
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PS Trinity, I am so glad you are out of danger, and so sorry for your pain. You are our hearts.
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Trinity..
First....#%#$$%^&!!! This really sucks...and I am sorry you have to deal with this.
Second...I am really glad you are out of danger.
Third...#%$#$%(&*!!! It really pisses me off that it is only because of threads like these that you got the information you needed. I am disgusted with my bs' attitude toward LE and yours and, it seems, almost all of them.
Fourth...I am glad to hear you are getting angry...that beats depressed...and as Dawne-Hope said...it will move you to act and advocate for yourself and others.
Fifth...I am so sorry you have to deal with this.
Finally... I will be thinking of you.
Claire
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Warning - long rant to follow:
Trinity - I too remain angry at Hopkins for their lack of LE preparation and information. If you remember that first PM I sent you when you asked about Hopkins I said their surgical skills are wonderful and the care is great, but that I also wrote:
"The only negative about Hopkins is that they, like too many breast cancer medical professionals, do not provide adequate lymphedema education for patients, or at least they didn't in 2008. So you will need to be your own advocate and learn about lymphedema precautions you will need to take. And maybe they're gotten more pro-active than they were in 2008. There's an excellent website put together by women from BCO who have LE and wanted to educate other women about it. It's called http://stepup-speakout.org/ Also, the Avon Foundation recently released a white paper on LE: http://www.avonfoundation.org/assets/le-meeting/le-white-paper.pdf Since the Hopkins Breast Center is officially called the Avon Breast Center, hopefully they are taking to heart the recommendations on the white paper. "
I am so angry and disgusted that things apparently have not changed up there one iota in the almost 4 years since I was diagnosed. I have a packet that I've put together with some of the great materials I've gotten from stepup-speakout and some of the other papers and position sheets Binney and Kira have brought to our attention. I gave a copy of the packet to my ps at Hopkins a few months ago, and saw my bs there last week and gave a copy to her as well. I was blunt and told them both I was extremely grateful for the care I'd receive and the levels of surgical skills they both have, but that as an institution, Hopkins is way behind the curve. I told them that in almost 4 years, I have never had anyone check my arms or trunk, after my surgeries no one ever discussed LE precautions with me (and I had an ALND) or asked if I felt heaviness in my arms or other funny feelings. I reminded them that I presented with cording after my BMX with TE placement, and even came in for a follow up specifically because I didn't know what that weird tightness was between my armpit and wrist, and even then no one told me about lymphedema and that cording is often associated with women who get it.
At one point, after I'd done a bit of research and learned that there was something called LE and that I needed to take precautions, I emailed the Breast Cancer Educator and asked if there were LE services at Hopkins where I could get an appointment with an LE therapist, be evaluated, and find out about compression. She pretty much blew me off, saying that I should take basic precautions like avoiding needle sticks and carrying a heavy purse on that arm, but essentially that I was overreacting to want to meet with an LE therapist to be evaluated and possibly fitted with a sleeve. Three months later, after flying crosscountry and resuming my exercise program, I was dx with arm LE. Last January, I was dx with truncal LE, a week after I'd had a routine follow up visit there. I even complained about the weight gain around my middle, and neither the PA, nurses, or the doctors recognized that as possibly being truncal LE. Aftter two weeks with an LE therapist CDT, I lost 5 pounds and 2 inches around my middle.
The good news is that my bs agreed with me and stated that Hopkins was started a lymphedema education program at the Breast Center. She also said they are going to start looking into some of the more specialized LE surgeries, like node transfer and something I didn't recognize the name of (Kira and Binney would know) but apparently some promising research about regenerating the lymph system. I don't know how far along the process is or how comprehensive this program will be, but at least they realize that they need to do something.
We have every right to be angry. We chose the #1 rated hospital in the country for our care, and they let us down badly with regards to LE. I would absolutely let your bs, your ps, and everyone else you can know you are angry and why. Maybe down the line you and I could get together and figure out a way to continue to pressure them until this LE program becomes a reality. Again, I am so angry that this happened to you, almost 4 years after it happened to me.
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Dawn-Hope, CLC - thank you both for your concern. You're both right about being angry. It's definitely better than being depressed! But, it is a bit depressing to know that I'm going to be living with this condition the rest of my life. I'm with CLC ... @$(&($@&%)@ That helps!
Dawn-Hope - this will probably cause me to become an advocate for others (knowing my personality), as soon as I come to terms with it myself. Thank you for directing me to the websites.
NatsFan - A special and long overdue "Hello" to you, my friend. I'm so sorry I haven't written in so long. I've been having a difficult time with all of this BC stuff. And, now I do remember you warned me about LE. OMG! And, I was so focused on getting prepared for and getting through surgery, that I completely forgot about LE.
Well, I can tell you by first hand experience with JH, things haven't changed. If they had even mentioned the word "lymphedema", it would have caused me to ask questions regarding precautions. But, nothing was mentioned to me. I just wish I had remembered your email to me. You sent it to me several weeks before my surgery (when I started a thread to ask about Johns Hopkins' care), and then I got so focused on other things, that I completely forgot about it. But, you definitely did warn me ... my scatterbrained mind forgot about it though! grrrr ...
I do agree that we need to put out heads together and find a way to get JH to start educating women regarding LE. I'll send you a PM, and perhaps we can start brainstorming. I have to do something regarding the lack of information being provided to women. Otherwise, all the suffering we're experiencing could happen to others. And, I certainly don't want that to continue to happen!
HUGS TO ALL!
Trinity
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Natsfan, there is some promising research out of Stanford about using anti-inflammatories, not yet published. Other than that research, I wish I knew some study that helped the lymph system regenerate.
Around where I live, the standard are the Harvard teaching hospitals, and Dana Farber/ Brigham and Womens adhere to the "none of MY patients get LE" approach, and supposedly MGH measured all women pre and post op, but we recently heard from a woman who is a patient there, and was never measured.
Brigham and Women's head of PT told me LE should be a "sentinel" event=medical error. With that approach, no one will admit to it.
And, the lack of information, at the time when it could most benefit us--the risky post op and active treatment phase--that LE risk calculator that isn't available right now had risks of axillary surgery, seroma, early swelling, radiation and chemo in the affected arm. When we most need the information, most of us don't get it.
We swell, and come here, and get the information and off course we're furious, because timely information could make a huge difference.
My breast surgeon's excuse was that "she didn't want me to worry". I was already worried, just clueless as well.
Trinity: we went after Lillie Shockney who is a mainstay of Hopkins Breast Center, and posted "ask an expert" questions about LE, and actually wrote that NO patient at Hopkins has ever developed LE after a SNB. She never got LE, so it's impossible that anyone else could.
Agree with being mad, but LE requires emotional adjustment and grieving, and we do come to terms with it, but even Binney, with all her infinite patience, will write "I hate LE."
What's not to hate?
Kira
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Hmmm! My family would be surprised to see me described as "infinitely patient"!
NOT!There is a lot of research going on about regenerating lymphatics. It works in rat tails and rabbit ears, but it's uncontrolled and over-proliferates, so there's years of research ahead on that. Biggest factor there is that after cancer we want to be in complete control of anything that would regenerate lymphatics, because tumors are as dependent on lymphatics for growth as they are on blood vessels -- we don't want to encourage uncontrolled lymphatic regrowth in the presence of any cancer cells. Mostly researchers in that area consider it a possible cure for primary lymphedema (which is congenital), not cancer-related lymphedema.
Two other kinds of surgery besides node transplant are being done regarding lymphedema. One is anastomosis (Dr. Chang at MDAnderson is the leader in this one), which involves microsurgically linking the lymph system and the circulatory system. It's experimental and one of its problems is the difference between pressure in those two systems. The blood system uses the heart as a pump and has considerably more pressure than the "slow and stupid" lymph system.
The other procedure being used (someplace in Europe -- can't remember at the moment) is a very exacting and specialized form of liposuction (regular lipo can scoop up lymphatics along with the fat
).Personally, my money's on Dr. Rockson's anti-inflammatory research, but it's all fascinating, yes? Time will tell!
Onward!
Binney -
Kira - Very interesting about Lillie Shockney ... I actually met her pre-op at JH ...she was very inspirational and made me feel at ease ... but, there was no mention about LE from her or any other individual at JH ...
I also find it very interesting that JH has given me a referral to their "lymphedema clinic" ...
"no patient at Hopkins has ever developed LE after a SNB" ??? Well, two of us posting on this thread have developed it ... how many countless others have gotten it as well? That just proves my point ... I think certain hospitals and doctors don't want their reputations tarnished by a LE diagnosis ...
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Anastomosis - that was it. Knew you'd know.
Trinity - of course you don't remember a single paragraph in a message sent to you by a stranger on an internet bulletin board - sent several weeks before your surgery at a time when your whole world had just turned upside down! I had to go back to my PM I'd sent you to see if I'd even mentioned LE to you, and I wasn't going through what you were going through at the time. It was Hopkins' responsibility to prepare you the best they could. Maybe we both would have developed LE even if we'd been told about every precaution there is, but we'll never know that, will we?
Check out Hopkins' current LE page: http://www.hopkinsmedicine.org/avon_foundation_breast_center/breast_cancers_other_conditions/lymphedema.html - I went right up the wall when I pulled it up last week. Among other things it says:
"The medical community does not yet fully understand why some cancer patients suffer from lymphedema after treatment and others remain unaffected. However, the surgeons at the Johns Hopkins Avon Foundation Breast Center have a low occurrence of patients with lymphedema following a sentinel node biopsy or axilliary node dissection. [my comment - how do they know what their incidence of LE is - no one there ever asks about it, ever examines a patient for it, follows up on it, or otherwise takes any steps at all to determine whether any of their patients develops LE. If you don't look for it, you don't find it.]
Is there any way to prevent lymphedema?While there is no guarantee about preventing lymphedema, the following guidelines are helpful:
Do not get needle sticks or blood pressure in the arm where the lymph nodes were removed
Be vigilant in treating injuries and cuts that happen in that arm
Learn about preventative measures before your surgery and request that it be part of your preoperative teaching [my comment - so a woman who has just heard those devastating words "You have breast cancer" is expected to learn all about LE prior to surgery and is expected to advocate that teaching about preventative measures be made part of their pre-op teaching???????? This puts the total onus on the patient!!]Many breast centers teach patients about preventative measures for lymphedema after their surgery. At Johns Hopkins Medicine, we have certified lymphedema specialists in the Rehabilitation Medicine Department to teach patients about prevention and treatment of lymphedema. We find the best time to teach patients is before surgery, so they are vigilant during their initial recovery.
The risk of developing lymphedema continues for the rest of your life so it is critical to be aware of the risks. Patients having an axillary node dissection will receive this type of instruction.[my comment - I had an ALND and received NO education or information whatsoever.] Patients undergoing sentinel node biopsy have a low incidence of developing lymphedema since the procedure was developed to reduce the risk of lymphedema." [my comment - they admit they give no instruction or education to SNB patients because they have a "low incidence". First, they have no idea how many of their SNB patients go on to develop LE. Secondly, they admit the incidence is low, not non-existant. Why would they deny any woman every tool possible to reduce the risk of developing LE?? I guess according to Hopkins, you don't exist, Trinity!
] -
First, they have no idea how many of their SNB patients go on to develop LE.
Isn't that the truth, natsfan!
CLC, trinity, Kira, carol et al.....you've all expressed with great eloquence my exact thoughts and feelings so I won't reinvent the wheel.....but Mary, your point above is the one that just eats away at me. There really is no mechanism for tracking or reporting the development of LE. My BS and PS are both NYC world-renowned (like Hopkins and MGH and Dana Farber) and they won't even talk to me about it. So, of course no one gets it. No one admits or documents that it exists.
My mother got arm LE nearly 20 years ago after a radical UMX and ALND. What I am learning is that nothing has really changed. Now, here I sit in the same position but thinking I was somehow safe because my BS said it was only a SNB. At least we have Kira and Binney and Jane and each other, but geeez........
Today after feeling sorry for myself and watching too much TV news, I noticed a commercial for ED or gout at least once every hour. There's money to be made by the drug companies so there's research. -
Oh, and just to add, I went back and checked the hospital website where they list all the amazing things they do in breast cancer surgery, research, quality of life blah, blah.....and the page on LE which I had to search for has not been updated since 2003!!!!
My poor BS has no idea what he's in for when I have my 6 month followup appointment. Anger and grief are powerful emotions. Enough ranting for me today. -
Hi all - wow! A lot of activity here since I last checked in.
Trinity - glad you're home, glad for the update, but irate along with all the others about your LE. Sending you big virtual hugs and assuring you that, at the very least, you have a safe place to rant and rave here . . . you are among caring friends.
I am that woman from MGH who never got measured. Moreover, NO ONE at MGH has EVER uttered the word lymphedema in any one of my myriad appointments over the LAST DECADE. I have a LE therapist b/c I read up on all this stuff in '01, before my SNB and figured out who to go to. I see her now after my BMX. No one has ever even suggested PT to me. It's just astounding. Heard from another woman who's also at MGH, same surgeon (nationally-recognized, super surgeon and nice person to boot) who said our surgeon had never even heard of LE specialist. What?
It the dirty little secret of breast surgeons everywhere. No one likes bad outcomes. It's really easy to dismiss them and sweep 'em under the rug when it's something as elusive as LE. Makes women feel like they've been betrayed and/or done something wrong . . . I consider it a sign of strength and intelligence when anyone admits they don't know much about something, but points you to a trusted resource for help. Pfffft.
Sarah
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With the advice of everyone on this thread, I did manage to get a scrip for pt...FROM MY PRIMARY CARE PHYSICIAN!!!! Thank goodness his nurse was so helpful...(I think she convinced him I was a woman on the edge...and that pt would be a kindness...or I may just be really imaginative...) At any rate, I couldn't find a soul with certification to treat LE, but I did find someone with some experience with bc surgery and she said she'd addressed issues like cording in the past. That was some reassurance.
I was so glad I saw her today. She gave me much more gentle and gradual exercises for my arm and did some massage that seemed very gentle. She also said that the odd pains I was having were absolutely connected with my surgery, having to do with overcompensation for my left (I had umx on left) and she gave me exercises that will help me get back to running, since I have gotten so tight in just these two and half weeks.
I cannot understand why pt is not just standard of care after major surgery of any kind. (Well, the more cynical part of me does understand why). As I said....I am disgusted...&**^$#*$%$#)*&!!!
Again...thank you for all of your advice and expertise. You may be bc survivors, but, to my mind, you are also bc warriors. Thank you.
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CLC - It too was my primary care physcian that was the one who finally listened to me ... after I had a meltdown on the phone and in his office. The first time I really 'lost it' through my entire bc journey. Totally agree with the pt as a standard of care.
So helpful to know we're not all alone. Totally agree ... what a bunch of bc warriors.
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There is a movement for cancer rehab: oncology rehab--and the PT where I send most my patients, their facility bought the Julie Silver Oncology Rehab LLC program and they're all getting trained.
And, I got a letter from a PT organization I'd never met, that they do oncology rehab--no mention of LE, but they include pre-op measurements and post-op measurements and assess for cording! I'll call them tomorrow.
Sarah: I feel so misled by MGH: I've been assured that ALL breast cancer patients at MGH are measured pre and post op on the perometer. But then, I dealt with the CLT-LANA in MGH Waltham, and she was a highly educated nut case...First told me to put my jovipak in the sock drawer and wrap, then told me to get a night garment! Emailed me that I had swelling, but she wouldn't call it LE. And, when I asked what to do about my hand swelling, told me to contact an OT.....I did report her to Jean O'Tool, but stopped short of an official patient complaint process.
CLC--sounds like you found a good person.
Yeah, why isn't oncology rehab standard? Why does Julie Silver of Harvard sell her program? And why is the refrain "But none of MY patients get LE" so common.
If you don't look for it, you'll never see it.
On stepupspeakout, I put in a quote from a major oncology text on LE--looked up LE in this standard reference and found this:
"Therapeutic nihilism (i.e. no treatment at all) is deplorable, although common. The fact that the average clinician is ill prepared to recognize the early signs of lymphedema must be remedied, because the sooner the treatment is started, the less treatment is required to prevent further progression."
Cancer, Principles and Practice of Oncology, 7th Edition, DeVita et al, p.1485
Mary--the Hopkins site just takes my breath away....
At the rad onc practice where I work, I saw a woman who had 29 nodes removed and tons of cording and doesn't want rads (who does) and NO ONE gave her any info on LE and as I was giving her the NLN risk reduction guidelines and the Juzo handout, she asked "If I don't come here, who do I call if I get swelling." I said, anyone on your team, and the chief rad onc muttered under his breath "good luck".
Kira
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Wow, the stories here are astonishing in what they say about the universally sad state of LE education for both patients and physicians. I am bringing to West Michigan a workshop that teaches trainers safe strenth training for women with and at-risk for LE, and am eyebrow deep in soliciting sponsor money to keep the trainers' tuition low. I am approaching regional cancer centers and a variety of hospitals. Well... same story as repeated over and over here, 'we don't have patients with LE.' But I had to laugh when someone here mentioned the irony that hospitals with purported zero-LE outcomes nonetheless have LE clinics! There are clinics here, too--exactly whose patients are they seeing? Each others'?
Anyway, in my travels and talks with these folks, who in reality are turning out to be pretty supportive, I realize it really is time to push them with what they do not want to hear, i.e. that BC patients are not being adequately informed of the risks when we must make treatment decisions, nor of precautions to help minimize those risks.
I want to build a book of LE stories. I have BIG IDEAS about capturing stories on YouTube, but that's for a bit later. For now, I think it would be useful to me and others who are starting to advocate, if we build a book of true stories, rant factor minimized, simply explaining what we were or were not told, and the impact of misinformation or no information on our lives, when LE appeared.
I am going to create a new LE topic just for the stories, which I will suggest follow a standard format, and be kept pretty short. If I don't get this topic set up tonight, look for it in the next day or so. My goal will be to copy/paste these stories into a handout I will share with the same people who are helping me with the strength-training program, to help convince them that in-house LE clinic or not, they simply must recognize that the information is not getting to the patients and the repercussions are inexcusable.
So...look for the new topic soon. I'll start off with my own story, which is not nearly as heart-rending as many of yours.
Carol
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Carol, I was going through my medical records the other day, and found my radiation notes--and the rad onc wrote at my follow up visit
"Patient says she has lymphedema: no swelling of the hand seen."
Like I made it UP????
Just what secondary gain would I get from that--fabricating lymphedema???
Somehow I"d missed that line when I first looked at the notes. Way to deny my reality.
In this entire oddessey, only one doctor did a great exam for LE: a fellow at Dana Farber who really examined my arm and hand and spotted the pocket in my web space between my knuckles. Guess I wasn't lying that day....
Kira
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Kira, the nicest thing I can say is ...well, can't think of anything nice to say! Unbelievable.
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Trinity - so sorry to hear about your lymphedema. but, happy to see an update. Sorry you've had some bumps along the healing road. Wishing you well and happy.
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Trinity, so sorry to hear about the cellulitis and LE, ugh. Possibly the LE will be minimal after the cellulitis is treated. Cellulitis causes swelling -- I frankly am not sure how they could tell how much is LE and how much cellulitis. Glad you had hospital treatment; cellulitis is serious.
I've decided that there are things which put us at risk for LE, and then some of it is just plain damn random. How many of us ate right, exercised, didn't smoke, etc., and still got BC? I got a seroma and my BS said "You're not supposed too; you're not overweight." Well, so much for that theory. And there's plenty of plump women who don't get seromas.
Just wish that treatment -- and good access to treatment -- was easy for all of us once we do come down with this condition. And that more research was going on.
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Treeskier,
I'd definitely get a referral to a PT who knows about LE. Failing that, a good PT who is provided with the original publication article on the Schmidt (sp?) trial -- with slow upward titration of exercise, and always wearing compression garments -- can help you get a conditioning program. Then you can just follow your home exercise program (HEP) components.
Definitely I'd get measured pre-and post. However, I didn't get measured until afterwards, so that proves absolutely nothing.
I'd get a good compression sleeve, gauntlet, and T-shirt that are snug but not uncomfortable. I'd wear these during workouts, cool-downs, and when flying, and for a couple hours after flying.
PCPs and interested PTs may be your best help, even if they have no regular link to oncology, and you bring them position statements such as noted in the top stickey threads to this bulletin board topic, and the resources that Kira & Binney quote.
Alas, we've all found we have to be our own advocates.There's only so much we can do to lower our risk. LE is not our fault anyhow!
And then go ahead and just do the best you can to enjoy life and do as much of your previous activities - and more -- as possible.
Best wishes.
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Well, I posted a tell-your-story topic, but the moderators sent me a gentle note explaining that surveys or studies of any kind are not allowed under the bc.org terms of agreement, and they removed the topic. Sure don't want to cause any issues for this wonderful forum that has been such a vital resource for me!
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Lunakin - I hope you're right about the LE being minimal after the cellulitis resolves; however, I was told that the cellulitis developed as a result of the LE. I don't know ... it's like which came first, the chicken or the egg?
And, I was on IV antibiotics for a few days in the hospital and since I've come home I've been taking oral antibiotics. The swelling has gone down some, but not much ... it's also the pain that makes it almost unbearable ... time will tell!
And, thank you ALL for everyone's support and concern!
Carol - I thought that was a wonderful idea for a new thread ... sorry things didn't work out ... it's important to get this information out there for everyone!
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Trinity, there are some threads on cellulitis, I can bump them--it's not unusual to be swollen and sore after an infection--and definitely during one.
The general rule of thumb is not to compress the arm or do manual lymph drainage until the infection is under control.
Just elevate and hydrate.
Carol, we'll have to think of a new way to approach it--I think it's so important.
Kira
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Can someone tell me if this would be "cording": I had snb and total of 15 nodes removed two weeks ago tomorrow. Have tightness, no swelling...yet, in armpit....feels like I am wearing a garment that is cutting in to me. Bs said this is normal and to keep massaging and doing exercises. Exercises are to slowly raise arm over head and the "chicken" which is bent arm extended behind. There is this uncomfortable tightness that isnt improving. Any help would be appreciated.
Dawn -
ah2bthin - the experts here will offer more definite advice, but just to let you know, I've had experience w/SNB on both sides (10 years apart) and have experienced a ton of tightness, no swelling afterwards - only 3 nodes removed one side ('01) and one on the right just about 5 weeks ago. On the right right now, it's VERY uncomfortable - PT over the last 2 weeks has helped immensely. For me, it's never been anything but just pain from having the works mucked with under there, and I returned to normal on the L pretty quickly w/PT - but again - let some of the sage women here weigh in. Good luck - I hope it resolves soon for you!
Sarah
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So - NatsFan - thanks for your attempts at educating the woefully inadequately-aware staff at the Hopkins Breast Center. I find it interesting that they are finally, at long last, interested in pursuing LE because they now have an opportunity for awesome new surgeries and their incumbent fees. They have ignored the cries and complaints of their patients FOR YEARS regarding LE - claiming, in fact, that "NONE OF OUR PATIENTS GET LYMPHEDEMA." And only now that the revenue opportunities have presented themselves are they reviewing their policy. That - and they've found themselves way behind in the research. They certainly have shown no leadership at all in this area - and they claim to be the thought leaders. So not.
I guess now that there is money to be made and reputations at stake more of their patients will suddenly present with LE - otherwise how will they recruit patients to these awesome new surgeries and treatments? It'll be interesting to watch their LE rates rise as the revenue oppurtunities increase. Won't it? It will be because at long last they'll ask about it.
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Carol, I'm sorry about losing your post -- it was going to be downright interesting as well as useful. Hopefully we can come up with a way to word it so it isn't a survey, but just another thread full of sharing. It's definitely a subject almost all of us struggle with. Gotta get creative here!
Binney -
Carol...can you create a separate website, and link to it from here? Many, many people have their links posted here...I don't know if that is acceptable to the moderators...perhaps you could consider running it by them?
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So glad to find all you experts on LE. Hope its ok to ask a question here about LE...I do not have it, but did have SNB, 2 nodes removed....been a year...had mammo yesterday, ultra sound and next week biopsy of scar tissue from lumpectomy. Can any of that bring LE on? what about the biopsy? I was lucky to be informed of LE, but my measurements were taken after chemo/rads..so far no swelling. Thanks for your help. I am bringing lots of info and suggestions to my onc next monday, and to my surgeions office about taking measurements first visit BEFORE any chemo, surgery, rads and the importance of LE prevention info for patients.
You have all been so helpful. unbelievable the lack of support/info on LE
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ah2bthin:
It sure sounds like cording, here's a link that should help:
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
msjag:
Hope all is well with the biopsy, the biopsy should not be a risk factor for lymphedema, but as it iinvolves a break in the skin of an irradiated breast--just be very careful about infection--call if there's redness/warmth/pain--again, hope goes well.
Kira
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