ACS info on LE
Found this recently on the American Cancer Society site: there's good news, and bad news--good news, they acknowledge that it's not just the arm in LE, bad news--they say to wait 1-2 weeks with swelling to inform your health care provider.
Signs of lymphedema
Some signs of lymphedema may include:
Swelling in the breast, chest, shoulder, arm, or hand
Area feels full or heavy
Skin changes texture, feels tight or hard, or looks red
New aching or discomfort in the area
Less movement or flexibility in nearby joints, such as your shoulder, hand, or wrist
Trouble fitting your arm into jacket or shirt sleeves
Bra doesn't fit the same
Ring, watch, and/or bracelet feels tight but you have not gained weight
Early on, the swelling may be relieved by raising the affected limb and the skin usually stays soft. But over time, the swollen area may become hot and red and the skin hard and stiff.
If you have had any type of breast surgery, lymph nodes removed, or radiation treatment, look at your upper body in front of a mirror. Compare both sides of your body and look for changes in size, shape, or skin color.
When to call your doctor or nurse
If you notice any swelling, with or without pain, that lasts for 1 to 2 weeks
If any part of your affected arm, chest, breast, or underarm area (axilla) feels hot, looks red, or swells suddenly. These could be a sign of infection and you may need antibiotics.
If you have a temperature of 100.5°F or higher (taken by mouth) that is not related to a cold or flu
If you have any new pain in the affected area with no known cause
So, the next woman who calls a LANA therapist and is told that LE is a disease of the extremities, refer them to this page. (Sorry, I forget who got that response, but it did stick with me.)
Kira
Comments
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Hi Kira,
I'm the one who got that response from a LANA-certified therapist: if it's not in your arm, it can't be LE. Since then, I have called three other therapists (no other LANA-certs anywhere near). All said they had no experience with truncal, so I thanked them for their time. Then I found that a hospital just an hour away has "one of four National Lymphatic Network centers in the country that is both a diagnostic and treatment center, offering patients a full continuum of care and expertise.'
Yippee, I thought, and having exhausted my other options, I called to make an appointment without even asking the truncal question. I was encouraged to learn that I had the choice between an evaluation with MD or PA, or a 'screening.' I chose an evaluation with the MD, hoping he has seen some truncal or at least believes it's possible.
But, would you believe the MD and PA are only available to evaluate for LE on Wednesdays, for a window of three hours? The appointment scheduler assured me that the team of therapists is available five days a week, so on that news I made my appointment. I was stuck waiting a few weeks because of several Wednesday commitments to be out of town on business. But finally it seems I will see someone to help me figure out what is going on.
Some days it feels like there is a conspiracy to keep us in the dark!
This is my rant. Next post I actually have a question for Kira and others, to help prepare me for my evaluation in about a week.
Carol
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To anyone with truncal LE,
I have an LE evaluation scheduled next week and want to be fully prepared with information about what I am feeling and observing. I have breast/midriff issues, but nothing that I am aware of in either arm. I had 5 nodes removed in a prophy bmx/recon 13 weeks ago.
I have kept some notes on what I notice as associations with my periodic feelings of swelling and just the peculiar feeling that my reconstructed (diep) breasts feel engorged (odd, because mostly I feel nothing there). I often feel that the sides of my breasts are annoying my upper arms, when my arms feel more volume against them (even when I feel nothing in the breasts) (and looking at the arms, I don't think that's where the swelling is). Oddest of all, is feeling swollen or heavy does not always translate to looking swollen in the breasts, although when I have the swollen-breast feeling, I can almost always see a definite puffiness in the midriff. Most of the time, but not always, any of the above is much, much better after a night's sleep.
OK, that's what I feel, and I'll bet it sounds familiar to some of you. My question is, what kind of information should I be bringing with me to the appointment?
I have spent weeks trying to figure out if there are any patterns to this. Have ruled out sodium as a trigger; seems like days I do aerobic activity for at least 45 minutes I'm less likely to swell, and days when I'm at my desk sitting a lot with no time-out for cardio, I am more likely to swell--but exceptions happen in both directions, so I cannot say there's a real cause/effect here.
I thought I was on to something when I stopped wearing a bra and switched to shaper camis with cups in them--no band under the breasts, no swelling for days, until--things swelled up anyway.
So--what other common triggers might I be looking for during the week 'til I see the MD, that I might at least be prepared to tell him I have looked for and either see an association or not? I really don't want him to tell me to go on a low-sodium diet and come back in a few weeks, or to stop drinking coffee and come back in a few weeks, or to stop wearing a bra...you get my drift.
Final question on what happened this evening: I was wearing a shaper cami all day but bought a genie bra while out today, to try, because the band is very wide and soft. Came home and put it on. Fifteen minutes later: PUFF! It was a bit snug, so I can see that lymphatic fluid might be constricted. But does it make sense to any of you that the swelling response could be as fast as 15 minutes, or is it more likely that other factors, perhaps brewing all day, are at work here?
Binnie posted a thought that LE is so counter intuitive. No kidding--and it's like playing hide and seek, too. IF that's indeed what I have...
Thanks for your insights.
Carol -
Carol, some women notice and judge breast/chest swelling by the marks in their skin after they remove their bra. Pronounced or long-lasting marks left by the edges or seams can indicate the presence of fluid beneath the skin.
For me, the biggest swelling trigger is barometric pressure changes. And overdoing it with some activity. There was a small study published a few months back that showed that cellulitis was correlated with ozone levels -- high ozone levels resulted in increased incidence of ER visits for cellulitis. So maybe ozone levels are a factor too (since at least some of those ER visits must have been lymphedema-related, and flares would increase our cellulitis risk.) I haven't tracked my own flares to see if they correspond to high ozone levels. (Because I keep forgetting!
)Lymphedema's not only counter-intuitive, it's also varies a lot from person to person. I can go without compression on my arms and hands for a few hours (assuming I'm not doing something to aggravate it), but my chest swells almost immediately without compression. But if I stand next to a table or desk and lean my hand on it, my hand swells immediately. Some women can handle no compression for hours or even days. Just depends on your own body's response. So no, swelling after only 15 minutes of an aggravating situation is not unheard of.
As for brewing all day, that's what LE does, for sure! As Kira's therapist tells her, "You've got to keep it guessing!"
Let us know what you discover. Hugs,
Binney -
Kira, do we need to do something about that advice from the ACS about waiting a week or two if swelling appears? Blood clots can cause sudden swelling, and waiting a week to check it out would be a very bad idea.
And since this advice is directed to a group of patients who are likely to be on meds that could cause blood clotting problems, should we protest? Nicely, of course.
Binney -
I think that would be wise, we just need to figure out the person who can actually do something about it--or would do something.
Yes, we are lymphactivists
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Okay, well there's a "Contact Us" link on the page, and I just used it to point out to them that lymphedema is not the only possible cause of new or sudden swelling, and that some causes, such as a blood clot, are emergencies. (I didn't think to add that cellulitis can also cause painful swelling, and since they imply that it's okay to wait a week or two "with or without pain" that could be a disaster.) I requested that they consider changing that part of their instructions and added my email address to ask for a response.
Perhaps if several of us called their attention to this problem they'd realize it needs adjusting. They're a much-trusted source of information, and one women might seek out if they developed some swelling, so it's really important that they not be misleading on something as potentially dangerous as this. Please, all, do consider addressing this. Click on Kira's link above, then on "contact us" near the bottom of the page. Thanks!
Binney -
Thanks so much for the help here. I've been out on business (flying four times this week, so double thanks for the under-armor shirt suggestion) and reading but not posting here. Looking forward to my LE evaluation next week and pity the poor MD who will have to deal with my growing question list. Hoping he'll conclude naw..not LE, and I'll leave with some baseline measures on arms (what would they baseline measure for truncal?), which I now understand I should have had before my bmx/recon. And if it's indeed LE, well...is this character building?
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Hi, Carol!
It's impossible to measure for truncal because we breathe.
Well trained lymphedema therapists can detect lymphedema by the feel of it under the skin, and truncal swelling usually leaves lingering marks from bra bands or straps. And it's often (though not always) painful, which is what leads some women to a diagnosis in the first place, since they find they can't ignore it.As for building character -- is that the same thing as turning into a real character? If so, LE will do it for you....
Let us know what you discover!
Binney -
Thanks, Binney. I'll keep you posted.
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Just FYI: Binney and I are engaged in an email war with the ACS: when we raised our concerns, we both received an identical form email, each from a woman--mine was Linda, Binney's was another woman--no last name, no contact info, addressing us by first name and assuring us that they'd pass on our concerns.
So, I emailed "Linda" back and expressed my dismay at this brush off, the first name basis and lack of contact information.
I received a response from "Mary", again to my first name, assuring me that all their information was researched.
I responded that when I contact major researchers in LE, they respond with contact info and we have dialogues that are meaningful, and that as someone who treats LE, has LE and fits the demographic of people who would look to their site for information, I am very dissapointed at their impersonal and actually disrepectful response.
I have a daughter who works of a non-for-profit, and she would NEVER respond to an inquiry with a form letter brush off.
The fact that Binney and I got identical form letters is just so insulting and that a response was met with hostility and another brush off doesn't speak well of the responsiveness of the ACS to concerned cancer patients and providers.
Binney says she's always trying to work with her local ACS on LE, and they don't want to hear it--they say they have info on the web site...
ARGHHH
And yes, I threw my membership on the board of the national society at them, for what little it will do to "Linda" or "Mary" whose job is to keep us cancer patients away from anyone with the power or authority to seriously address our concerns.
Kira
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Blood pressure rising...thank you both pushing back on ACS and for posting their response here.
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Binney got a very snippy reply thanking her for her interest and passion about LE from "Mary" an on-line specialist, and a thinnly veiled threat not to contact them again.
Wonder if "Mary" the specialist actually had bc and LE if she'd patronize someone about their interest and passion--ARGHHH.
I get to pull the health care provider card and I've told "Mary" and "Linda" that my medical students would fail a standardized patient exam if they presumed to address a patient by their first name, without first asking permission...
Yes, we are interested and passionate about LE, you moronic online "specialist"
Kira
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I will happily write a snail-mail letter to ACS headquarters in Atlanta (am I right about that?), echoing the concerns Binney and Kira outlined in these posts. I would address the letter to the medical director, with copies to board chair, etc. I have spent just 3 minutes researching online have not found those names, so I'll need to work at it for a while to find names I need. Does anyone happen to have names of the med director and of any directors who may chair commitees that are relevant to this issue?
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Um, by going through the media center, I found the clinical email for the president. He's an ob/gyn at University of Alabama Birmingham, and sent him an email....
http://pressroom.cancer.org/index.php?s=18&item=42
His email is easy to find at his hospital....
Here's another physician, who works at Emory
http://pressroom.cancer.org/index.php?s=18&item=40
Dr. Len has a blog, but I couldn't find an email address
http://www.cancer.org/AboutUs/DrLensBlog/page/Dr-Lens-Biography.aspx
It shouldn't be this difficult to reach someone: when I contacted Livestrong--who hired the amazing Jane Armer PhD to write their info on Lymphedema, I was immediately put in touch with a woman who was in control of website content. Immediately.
Kira
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I stumbled on the American College of Surgeons' website while looking for a directory of ACS officers. That led me to 'Cancer Program Standards 2012: Ensuring Patient-Centered Care' (http://www.facs.org/cancer/coc/cocprogramstandards2012.pdf). This is a 140 page book of standards for cancer treatment programs. I searched the document for the word lymphedema and its variants, and there is zero mention.
My biggest gripe is that I had pre-surgical consultations with two BS and two PS and only one even mentioned LE risk, downplaying it at that. In all instances, these were consults scheduled just prior to surgery (with BS 1 and PS 2 I scheduled but then canceled my surgery, after changing my mind about type of recon and started over in another city so I could have a diep).
Seems that if the American College of Surgeons' Commission on Cancer accredits cancer treatment programs, they sure ought to be specifiying standards for LE education, risk discussions, and follow-up. That everyone hears little to none about LE from their surgeons is proof positive that LE is not on the surgeons' radar screens, and this document seems to say that there is no accountability for it. Plenty of mentions of the need for nutrition counseling and other important cancer treatment components, but no LE mention.
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Carol, there is less than 15 minutes of lymphatic education in medical school--and you'd expect there to be more in specialties who deal with it (which actually are all physicians) but notably, surgeons, breast surgeons, oncologists.
I went to the NLN lecture and Janice Cormier, a surgeon, said "I don't treat LE: I cause it."
After getting my radiation from a rad onc who flat out said "Radiation to the level one nodes has never been shown to cause LE." I went to work for a rad onc who puts LE in the consent form for breast radiation. And we have measuring tapes in every exam room.
I just got an email from a director of the ACS apologizing and saying she'll get back to me ASAP after the medical editors review the concern--I asked to to have them look at the latest NLN guideline on early detection:
Breast cancer treatment places individuals at lifelong risk for the development of
lymphedema. Early identification of lymphedema is believed to yield better patient
outcomes. Patient education regarding the signs and symptoms of developing
lymphedema and objective measurement of arms are needed to promote early
identification and to improve patient outcomes.
Patient education: Patients should be made aware of the need to contact a
healthcare provider immediately if they begin to experience feelings of heaviness or
tightness in at‐risk arms; if they notice swelling in the affected area; or if the arm
and/or at risk chest or truncal areas becomes hot or red.
Objective measurement: Pre‐treatment baseline measurement of arms is essential,
as this serves as the baseline data to which subsequent measurements can be
compared. Regular measurements following treatment are indicated for the
remainder of the patient's life. Surgeons and medical oncologists who treat breast
cancer and follow breast cancer patients/survivors should conduct these
measurements at every patient visit. Such measurements should also be conducted
in cases where primary care physicians or advanced practice nurses provide follow
up care in lieu of the treating surgeons or oncologists.So, I got a response, not sure if Binney did. Getting blown off by an institution that is supposed to address my needs as a cancer patient, just ticks me off.
It took quite a few, very pointed emails to get to this point.
Arggh
Kira
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Kira, you get an A+ for persistence with the ACS issue, so thank you for that.
I don't suspect med school includes much on nutrition, and yet the American College of Surgeons accreditation requires facilities to have nurses who can educate patients on nutrition. So, why can't they require education on LE risk?
I'm really quite admiring of my PS for a variety of reasons, but I can certainly see that he knows little of the lymphatic system. I have had to really nudge him along to conclude that what I am noticing about my comes-and-goes truncal swelling might not be the protracted post-surgical edema he wants to think it is. I had to bring in a document Joachim Zuther sent me to convince my PS that truncal LE is not the very rare condition he thought it to be. He's now an advocate for me to get an eval from a qualified person, and most recently he came pretty close to actually saying the words that LE is a weakness in his knowledge.
I'm supposed to have stage 2 diep work in December, and normally that involves doing some liposuction and transferring the fat to the breasts. Not to be bigger in my case, but to fill in some spots and round out a few corners. Aesthetically I want that work to be done, but the idea of lipo in the trunk scares me now that I'm worried about LE issues. And, it's clear to me that my beloved PS really does not have the knowledge to advise me one way or the other on added risk, if any, that lipo brings to the LE question.
Somewhere I read that best-practices lipo using very small cannulas causes very little disruption to the lymphatic system compared to older methods, but I cannot find anything that specifically addresses LE risk.
PS and I agreed to put the lipo question on hold until after my LE evaluation, which is with a physician at a dedicated LE clinic. I'm holding my breath and hoping that this fellow's opinion on the lipo/LE risk will be a well considered and informed opinion. Your observation about lymphatic subject matter in med school is not encouraging. This guy's bio says he's a wound specialist. Do you know if there are any specialty studies in the lymphatic system that I might ask the eval MD if he's completed?
What a crappy place to be when you have to wonder if the specialist had any relevant training!
Carol
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Kira and Binney, Thank you for being lymphactivists with the ACS! Wait a week or two? No way.
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Many thanks. I regret to say that I haven't given money to ACS for many, many years and am trying to figure out a polite way to tell someone whom I really like that is way I do not participate in ACS fund raisers. That said, ACS was a tremendous help to my grandmother when she had breast cancer back in the 1960's.
Sue
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Sue, absolutely, the ACS does good things for cancer patients of all kinds. I admire them tremendously. So I sure as heck wasn't expecting a fight when I wrote to them and asked them to reconsider that bit on the LE information page. I even thanked them for having a LE page and for putting so much accurate information on it.
My only squawk was with that one point, but it's a dangerous one, and we have women here often who need emergency care but can't imagine "a little swelling" could be such a serious problem. So I want this generally very good organization to get this right, because they do have the trust of many cancer patients and professionals. If one woman is misled into thinking she can "wait and see" about a blood clot or cellulitis -- or about early-stage LE for that matter -- then that's one woman too many.
Kira, thanks for persisting and getting to the right ears, and for having all that information at your fingertips. (And nope, no apology to me -- are we surprised?
) Now we'll see what happens. Bottom line, after all the emails that have been exchanged, is, do they change the page or not?Sure hope so!
Binney -
Final update: Binney got caught in email hell--she never got out of the first name "on-line" specialists who assured her it was all taken care of, and go away.
I got further up the food chain: I emailed the medical directors directly and got a response from a policy person and was referred to the Director of Cancer Information--a nurse with a doctorate, who refers to herself as "Doctor" and we had a useless conversation where she told me that the website was being changed already and "thank you for your concern"--I talked, and she said nothing other than repeating "thank you for your concern". The overall message I got was "go away and don't bother us again."
I did tell her that patients are not getting information on lymphedema consistently and they will turn to the ACS for information, and it's very important that that information doesn't cause a delay in diagnosis or ignoring a life threatening condition ("thank you for your concern").
So, I'm done. Binney is done, and hopefully the website will be changed.
It's really hard to deal with an institution that thanks us for our concern while acting as though we are royal pains in the butt. Sorry for advocating for myself and all the other cancer patients out there.
That final brush off really put me in a snarky mood.
Kira
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Final note: I did get an email from the ACS mission director assuring me that the web site will be changed, and our concerns did not fall on deaf ears.
Just checked the web page and the wait two weeks line is GONE!!!!
as of yesterday
So, the ACS heard us and changed their web page
Hmm, how long have we asked bc.org to change/update their pages?
Kira
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thank you both for trying.. the wheels of progress turn slowky, if at all.. its' a shame that those who "should" be there to help, are so uneducated, and unconcerned.. thank you, and Binney , both for trying for us all........3jays
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3jays---they changed it! I'm thrilled.
Kira
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Onward!
Binney -
Wonderful news!! And again a testament .to the hard work, patience and vigilance of our fearless leaders: Kira and Binney
Thank you both for the countless hours.
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