GRRRRRRRRR I HATE LE..........
Comments
-
Christine5, I had several email exchanges with my breast nurse recently who first wrote to inquire why I hadn't been to meetings lately. Was something wrong? She happened to catch me in the depths of my most recent flare so I responded with the usual LE lament about the lack of information blah blah blah. She wrote back that breast cancer surgeons are used to fixing things so they don't like to discuss LE since they can't fix it and besides there is little education provided about LE in med school. (My face is reddening now.) I said that not being educated THEN wasn't their fault, but ignoring it and refusing to learn about it NOW is certainly their fault. I asked her why in all the time I'd gone to these meetings was LE never raised along with all the meditation techniques, bra sales ladies, drug company people, and various, endless fundraisers. She didn't want to scare the women. You get the picture so I won't go on.
Like Binney says, "LE is breast cancer's dirty little secret." We must continue our good fight. Too late for us but if we can save any women from having to go through this it is so very worth it.
0 -
I think LE being "BC's dirty little secret" may also have to do with doctors worrying about being sued. Certainly in the US, there are just way too many lawsuits of all kinds. I'm not saying some people should not be sued, but doctors can hardly afford malpractice insurance these days. When I asked my BS about the possibility of LE, she said "not with my patients". I do think she is an amazing surgeon. Of course once I then had chemo and later rads, it would be hard to make a case that any one thing caused LE. Perhaps their denial of LE is actually a strategy to not get blamed. If they became more proactive, they would then have to admit that they might be somewhat at fault?? What I don't understand is that there are not more PT people, surgical supply people etc...asking to speak to BC women, along with the makeup, wig, bra suppliers.
0 -
Dawne-Hope, I like that line! Trouble is, it'd probably make your blood pressure rise!
You can call them and see if they do it and what time might be most convenient, I suppose, but here we just drop in whenever and there's always somebody happy to do it for you. Good for their PR, and convenient for us.Several of us, in various parts of the country, have tried getting oncs and BSs to provide written material about LE for patients, and the universal reason they state for not doing it is that it scares patients. As you can see by some of the posts here, when women know about it they begin to question whether they want to allow node sampling or rads, and some of them freak out about it.
To be honest, that bothers me too -- what if they choose to undertreat the breast cancer because of their panic over the possibility of LE?
Nobody wants that to happen. But I still feel strongly that we need and deserve to know the serious side-effects we may be facing, and then to get to a point where we're in control of the decisions we make about it all.But I'm not convinced that's all there is to what the docs are thinking. I think they also don't want to take the time to help women work through this reality -- it gets in the way of their making prompt decisions about treatment. I can even empathize with that -- they're busy people, and what they're busy doing is extremely important. But...bottom line, we still deserve to know.
To me, the sensible decision would be to calmly include pre-treatment baseline arm measurements and regular symptom checks all along the way, so that women not only are aware of LE, but also have the sense that their doctors will see them through it should it develop. One of the scariest things about LE (for me at least) is that sense we get from the medical community that "You're on your own, baby!"
I agree about the fear of law suits too, though no one has ever successfully sued regarding LE. That could change, of course, but the science isn't there yet to "prove" whose "fault" it might be, so it won't be happening anytime soon. As Kira told me once, though, "Surgeons like their patients unconscious." Guess that extends to both on and off the operating table!
Still, it's well worth continuing to educate our health care teams, because some of them have actually gotten smarter! ONWARD!
Be well,
Binney0 -
Shoot, I don't want to sue. I just would have preferred being INFORMED what I was up against instead of being told not to be neurotic about LE; that it's practically gone these days, live my life as usual, etc., etc. And as for suppliers of LE products, I guess since most of it is either through therapists or online companies, they probably don't have the personnel to devote to it, especially for a place like Kentucky, where I reside. Perhaps the louder we get, the more we demand, the more they'll give in that way. I don't know. We're just trying to get through day by day, experimenting with what does and doesn't work for us, having a pity party now and again and eating brownies. And doesn't it gall you how expensive it all is!! I just spent a lot of bucks renewing my supplies. There goes any thought of a summer wardrobe!
0 -
binney- Well said! I think we are all too smart for most of our doctor's tastes! My poor Onc. She actually suggested I might want to get a second opinion. I think she wanted to pass me along to someone else! However, after nearly a year, I have noticed she seems to respect me more and more, even accepts my many research print outs on vitamin D and supplements. She was traditionally trained in medicine and I would bet there is not much time to learn the new, upcoming things. We, BC women, all have a huge vested interest in researching. I'm glad some of our doctors are open to learning along with us. My great hope is that if we keep the information about LE coming their way, eventually they will be as knowledgeable as all of us have had to become. I do wish I had been told about the new studies that removing extra nodes were not necessary. I ended up having two surgeries when my SNB was negative and later came back with a micromet. They put me back in surgery for a AND last May. The new guidelines about node removal came out in September I believe. I will always wonder if that info was already becoming available. No one discussed it with me, just said I needed more nodes removed. Sigh.... So here I sit looking carefully at both my arms every day sure one is getting "puffy", prepared with my sleeve, hoping for the best. Like many things in the medical world, it should be better than this.
0 -
Le has no PR unfortumately, and that effects almost every aspect of our difficulty getting treatment/understanding/good insurance coverage.
As for the women who may defer life saving treatment due to Le risk, I can also tell you that an oncologist told me there are always a small group of women who need breast surgery to live and refuse to have it because " they feel they are their breasts". People make decisions for many personal reasons and I do not beleive that a significant portion of women at risk will defer treatment and chance an earlier death due to unknowm Le risk.Some will, but these may be women who would have other reasons for fearing or deferring treatment. I hate my LE--- but I would not have done anything differently. I might not be here to complain about it if I had refused node removal!
It really is a shame there is nobody to put a public face to LE, and even sadder that despite many letters of request, the Oprah show never did an episode on this condition. One show and all of America would have had access to basic information that could helped primary and secondary Le patients the world over. It didn't need to have a breast cancer focus--it could have been all about LE and coping with its treatment. WE NEED TO PESTER DR. OZ now ladies!
Ingrid Bergman had a very bad case of LE, and one would hope maybe someone like Isabella Rossellini could be willing to speak for the diificulties of the condition?
0 -
I'll chime in here also: it's shame, disinterest, a focus on saving your life and damn the collateral damage--and the fact that the very people who cause LE are not usually into continuity care.
I can't tell you how many patients I see who have a very noticable case of LE: like 5 cm larger, fibrotic arm, and I go and read the surgeon's note AND the onc's note, and either there's no mention of examining the arms (most common) or in one notable case--a prominent Harvard teaching hospital, the surgeon actually dictated "no lymphedema:--so I faxed him MY note, with measurements and a detailed exam.
There's a situation called "ego-dystonic"--it's when our actions conflict with our inner sense of who we are. I teach in a medical school, and there's a session on medical errors and my students think the session is too simplistic: it's created by the Schwartz Center at Mass General, in memory of a man who died young of lung cancer, and the students view a poignant video of patients and their families who have suffered medical errors and the situation was compounded by their physicians not acknowledging the situation or apologizing.
So, I go into the seminar, all upset, because I can relate, and my students say; "It's not that easy: what if you don't recognize the error? What if the hospital is pressuring you not to admit the error? What if you're horribly ashamed? What if it horrifies you that you created this error?" They have a point.
There was a recent case study in NE Journal where a doctor performed the wrong surgery, due to a horrific day, and he admitted how horrifed he was.
So, our surgeons and onc's tend to equate LE with error. And, since they don't know how to treat it, they feel it's a major hassle in their day. So, they ignore it, deny it, and have no sense of our reality.
In medical practice, clinicians like easy problems: a sore throat, something with an obvious solution: LE is a mystery to most clinicians and it confuses them and they're stumped, which is also ego-dystonic.
When the head PT at Dana Farber told me she intended to make LE a sentinel event--which equals a serious reportable medical error, I tried to tell her it would lead to even more denial--that she should strive for early diagnosis and treatment, but she wouldn't listen. Just down the road, Mass General monitors all women with perometers and their goal is to treat early. Why can't Brigham and Womens adopt that approach? It happens, and the best thing you can do for your patients is to be informed, have a treatment plan in place and a way to idenitfy it early.
Sorry for the rant, I'm over-tired--dealing with buying a new house and trying to sell the house we've lived in for 20 years, but it still pisses me off that surgeons (who create LE, and are the people we are seeing at some critical healing moments) and oncologists who follow us for years, don't view LE as a priority. The Lance Armstrong Clinic at Dana Farber has LE in its mission statement, yet the medical director has no idea how to treat it, and their surviorship course has a half hour on arm rehab......
Kira
0 -
I dont consider lymphedema "an error". I was warned about it before my surgery (and woke up with a BP cup on my surgery side---idiots!) ...BUT NOT dxing someone is INEXCUSABLE! We all deserve teh right to be told the truth and be given treatment, options, education, therapy, etc...for ME, not being properly dx'd with cellulitis for over a year was PATHETIC! evne though I kept telling the drs over and over...MORONS...whatever, NOW they are educated, and more knowledgeable and hopefully NOT TOO PRIDEFUL to dx teh next lady with my troubles...save her some agony. hugs terri in MI
0 -
TerriD, dawn-Hope, Kane, Designermom, Binney, moogie and Kira, I think I'm getting a picture. I have really been sad that the BS says-no lymphadema, this is just post op swelling- five months post surgery. I guess it feels to me like he is saying everything's fine, right on course. And not acknowledging my discomfort or the possibility of a more serious problem. The lymphadema specialist has me seeing PT three times a week, sleeves, gauntlets and compression bra finally here and the surgeon says no need for any of this? He even said, i have no need for travel precautions or anything. I am starting to see improvement in my comfort after four weeks of PT and so on.
A sentinel event? That would certainly make a lot of surgeons pretty scared about admitting it. Wow!I agree that it would increase denial and early treatment, dx, acceptance and follow up sounds a lot more productive. My surgeon is all about the numbers, I think I am understanding so much more, thank you all for your imput, it really means a lot to me because I really don't know who else to talk to about this. My partner is amazing, beyond words amazing and wants to help and understand but I feel like I am complaining when I bring it up and I hate that. I feel sad more often than I ever have in my life and when I feel as though this is being dismissed by the BS I feel like he thinks I am
making it up!
I don't know why his opinion means so much to me, I guess because I thought he was brilliant, I mean really brilliant and I trusted him to remove my breasts and to treat and help me. I really need to trust him and maybe that is what is troubling me about this.
Does this make sense to you all? I too am pissed Kira, and I am not sure what to do with that frustration. Almost makes me want to find another surgeon! I totally understand the idea that surgeons like their patients unconscious, so sad that it is so true!
As far as LE being bc dirty little secret, how totally accurate is that! My Mom was dx at 76 had a lumpectomy and rad and is five years out, doing great- never has even heard of lymphadema. Then my sister, dx on the same day as me with DCIS just like my moms and also had lumpectomy and rad and had no idea she was even at risk for lymphadema! (which she heard of because of my dx)
Thank you all so much, hope you have a cool, relaxing Memorial Day weekend!0 -
I'm not saying that LE=medical error, but all too often medical error is involved. In the surgical technique (how the tissues were handled, how the scar was created), in managing post op axillary web, seromas, and cellulitis. And, the major mistake--in not doing active survelliance for it, acknowledging it and referring.
I still think that surgeons are ashamed, oncologists don't know much about it, and and when they don't know how to treat it, it's far easier for all to deny it.
And, it's ego-dystonic to think you created harm while trying to do good.
Kira
0 -
Terri, Not saying the BP cuff on the cancer side wasn't potentially harmful, but, they weren't trying to be idiots. Whenever possible the IV goes in on the side opposite from where they are operating in the axilla. The issue is concern of injury to the axillary vein. If the IV is in the right forearm, for example, and they are operating in the right axilla, if they puncture the axillary vein, then as you are bleeding out, none of the IV fluid going in the forearm does any good. All that fluid will go rushing out the hole in the axillary vein just making things worse and not helping you. So, the IV typically goes in the side opposite of the side they are operating on. So, they then have the choice of putting the blood pressure cuff on the opposite arm--the same arm the IV is in. Then everytime the cuff cycles the IV stops and none of the meds they want to get you reach you during the time the cuff is cycling, to say nothing about the possibility of the back pressure blowing the IV in the middle of the case. .
Now, that later is example is what I plan on encouraging when I go in for my surgery this week. I plan on having DH write in big black permanent marker, DO NOT USE THIS ARM on my LE side, I've petrified they won't pay attention. So, like I said, not saying they weren't wrong to put the BP cuff on the operative side, just think they weren't being crass and careless, just made a decision that they thought was best and those of us living with LE think is pretty dumb.
And Terri, I have to agree with the frustration of them not listening and treating or not getting it. Had a provider look at my arm in its sleeve last week and say "it doesn't look that much bigger than the other arm." WTF! That is the point of all the work I go to treating it thank you very much.
I think you're right Kira. I think they like what they can treat, and a disease they don't understnad well, don't have a cure for, and is a complication of something they did, they just don't want to face. Espcially in that early symptomatic phase before the swelling gets really obvious when they can accuse us of "being anxious" and blow it off as being all in our heads.
Used my arm a lot yesterday, and today it is getting hot out. My arm is not liking it one bit
0 -
@christine 5, Drs have their own specialty, and do not know everything. i understand your needing him to acknowledge and know, esp when you respect and trust him so much. but all he is a particular area of knowledge, of expertise. period. frankly, even when i have felt it was their responsibility to know about this, my surgeon, oncologist, radiation dr., primary dr. dermatologist. allergist...jeepers I SAW TEN Drs. you wanna talk about dissappointed??? and some i felt they should have known. teh dermatologist, when i was sitting in hos chair during a cellulitis erruption. he should have knew...and YES i have fired some drs over this. the radiation dr (all 3 of them) should have taken this more seriously. i was so sick, fevers 103.5 and they had me continue on with my treatments day after day...well in retrospect...what if they didnt...would i be here today? if i opted out of radiation becasue of the cellulitis??? i remember begging them, i cant do this, i am so sick...it just would have been "nice" to get some meds to help with my illness-antiobiotics...whatever. it is all done with now. I am getting better, (I pray), and am alive to share my hair raising experience and help others not suffer long term like i did/am...and i am so grateful that i can do nthat, cause that makes it help me, ya know. what i am saying is if you like your dr. stay with him. he is not all-knowing (that would be God).
@kmmd-thanks for the explianation. i can tell you i was horrified and angry when i woke and saw the BP cup on me. after that I aalways write in permanent marker..NO NEEDLES. NO BP on my lymphedema arm. do not use waterproof. it runs all over. people will comment. might get ticked off. some even insulted. but some will compliment you and approve. its ur life, ur health. and paying for someones error for the rest of your life sux. i guess their "good call" and my opinion vary a bit. its over. i'm ok. i will live thru this. (((hugs to all))) terri im MI
0 -
Terri, I'm glad to hear you say writing on the arm seems to be a workable idea. Hopefully it will work for me this week
0 -
KMMD--I didn't know you were having surgery--is it gyn in nature? Binney has this affirmation: "May all the hands that touch me be healing hands."
When I had the D&C, hysteroscopy in February, I went in with a gauze finger wrap, a pink stockinette that Binney gave me, and the pink wrist band: and the anesthesiologist was fascinated, and thought he'd "help" me with my lymphedema, so he made sure they gave me NO IV fluids--my gyn had never seen this before, I got less than 200cc, and had been NPO all night. And he told me, proudly, about this strategy in the recovery room. I wanted to yell:" I have LE, NOT CHF you moron--and thanks to you, now I'm dehydrated!". But I felt too lousy and let it go. Next time.....
Wishing you all the best this week.
We're getting ready to move, and put our house on the market,and are clearing out 20 years of clutter and it's getting warm and humid, so garments are on!
Kate, I'll be thinking of you.
Kira
0 -
Kira, yes, I'm having a BSO Friday. I'm sorry it really isn't funny, but that story of the anesthesiologist and what you wanted to say to him made it funny. I like that, may all the hands that touch me be healing hands. I can keep that in my mind it will keep me calm
0 -
kmmd, write on the back of your hand too, if you don't want IVs placed there, and on the inside of your elbow if you'll be staying in the hospital afterward, so they won't do blood draws there. One Sistah had her surgeon sign her arm after she wrote on it, so they'd know it was his order.
One really good item to have is a G-sleeve, but I doubt you have time to get one if your surgery is this coming week. For future reference, it's here:
http://www.g-sleeve.com/
If you have a length of stockinette you can make one yourself, but it's still a good idea to have it written on your arm as well.For procedures like colonoscopies (yuk!
), I write on my arms and then wrap them both (wrapping alone is not enough in case they remove it before you're awake, as happened to one gal here who woke to find a BP cuff on her arm and her bandages in a heap on her bed), then wear G-sleeves over that. It's hard to get a hospital ID to fit over bandaged arms, so they use my ankle. I feel kind of like a sumo wrestler, but so far they've managed to leave my arms alone.We'll sure be thinkiing of you, kmmd -- keep us posted!
Hugs,
Binney0 -
KMMD, it is kind of funny--he really thought fluid restricting me was the way to help me from swelling. So, he took LE into consideration, but unfortunately, he got it all wrong. Enough versid and I would have chewed him out--a little frontal lobe disinhibition goes a long way....
I'll be thinking of you on Friday, and hope it all goes well, and you recovery swiftly.
I did write on my arm for the FIRST D&C--I started tamoxifen loaded with polyps and my new gyn --a great woman who I switched to when my long time gyn 1) told me the breast mass I found shortly after a negative mammogram was "in my head", 2) wouldn't come to the phone when I called her to tell her the radiologist told me it was cancer, 3) wouldn't advise me on surgeons and 4) when she saw me three months post op said "If you'd only asked me about surgeons, you wouldn't have LE now. And she said she'd hold on evaluating the endometrium for 6 months. So, I marched across the hall from my office and grabbed this wonderful gyn and begged her to be my doctor, and she agreed and I was in the OR within the next week. She's awesome, and I never knew the limitations of my former gyn--a woman I'd worked with, and gone to faithfully for 15 years, but never with a problem....
Oh, I guess I should schedule that ultrasound she wanted to follow up on the ovarian cysts....
Kate, if we didn't laugh at this stuff, we'd cry. So, I appreciate that it gave you a chuckle. I'm not Suzy, but I try.
Healing hands.
Kira
0 -
I don't know whether to laugh or cry or hide! I am a former nurse. Why in the world are we patients who are in the throes of illeness and treatment having to safeguard ourselves by writing on our body and putting protective coverings on our bodies before surgery? Do surgical teams not read charts and follow orders? This is all too frigtening! Yet I now I will be getting the Sharpie pen out if I need hospitalization!
0 -
I f*&%$ hate this.
It is hot
It is humid
my sleeve is so freaking hot
I have stuff to do around the cabin... people are coming over tonight...so I can't just take off my sleeve and lie down
let these doctors try to throw a party in the heat wearing a sleeve before they say LE is no big deal
0 -
cookie, I've thought that way myself. I had one physician comment on things I could buy to hide my sleeve. (not as helpful thinking I was uncomfortable, but, advice as in that is something that needs to be hidden) I just smiled and moved on, but, my thinking is, if I can stand wearing it, you sure as heck can stand looking at it
0 -
I stayed at my daughter's overnight. She lives in the south of the country. At the beginning of the Negev. Which is a desert. I was NOT comfortable.
When I had my ooph in Nov I told everyone in sight not to use my arm and had no trouble. It was written in my chart and on my bed. In the OR the nurse wrote on my arm and then tucked it under a sheet. I developed LE around that time but I'd had my suspicions that something was "funny" before that so nothing that was done at the surgery set it off, though I suspect the trauma of having surgery didn't help.
Leah
0 -
Leah, My LE therapist said she does worry about fluid shifts around the time of surgery worsening things
0 -
kmmd, it's something I worry about since I am seeing the PS next week about prophy mast for the remaining side plus DIEP recon. I go back & forth but lean heavily towards doing it.
Leah
0 -
Okay, I'm going to ask a stupid question. Like cookie, I do not do well with heat, tight garments and discomfort. I fear if my sleeve gets too hot, I am just likely to take it off...which is not smart. If I start to feel hot and crazy, can I just run my arm under cold water and get it wet? Is that a crazy question? Could I go for a swim in it? As always, I am trying to find a way around things. Would that hurt anything?
0 -
I was wondering about getting it wet too. I often hold it in front of the fan during hot flashes and that helps.
0 -
at the end of the day if I am dying of heat I take it off...like I did tonight....I'll just wear it when I go to bed...usually by the am it's better
0 -
After going through umpteen flares, I don't care how hot I get, I'm keeping that sleeve on and sleeping in my oven mitt! I turn the air conditioning down (or is it up) and when I go to bed, the ceiling fan is on high. My poor DH covers himself with a heavy blanket, but he understands my misery most times.
Today it was 94 and humid. I went with friends to an artsy little town but we ducked into air conditioned places frequently. Still, my fingers are starting to puff up so I'm off to massage. Sigh. I had to explain LE several times to people who asked. I will preach till I choke! Found some delicious fudge. DELICIOUS.
0 -
Kane, wouldn't it be interesting if our DHs got together and talked about this? They would have a completely different take on it Like yours, mine has a view of LE that involves sleeping with the covers pulled up over his head all summer long.
DMom, that's definitely not a stupid question, and we're all trying to find ways around these stupid restrictions. It's just that some of us find we have less flexibility than others. If the weather is dry enough that your garments will dry within a reasonable amount of time it's probably okay to wet them (I carry a spray bottle with me, but I live in a desert so they're dry in 15-20 minutes). But if it's too humid you'd be risking a fungal infection. I can't imagine it'd work very well in, say, Louisiana. Or Italy. Unless you were planning to sit in front of a fan until dry.
Also, wetting compression garments increases the compression somewhat, so you need to watch that too, especially if you're compression-sensitive. If you're going for a swim, just take them off, because most of us don't need compression garments in the water. (Ah, freedom!
)Kane, please pass the fudge!
Binney0 -
i was told from my therapist (a) you don't need to wear sleeve in the pool, and chlorine does break them down faster.. but she said ok to cool off, it does increase compression a bit as it dries. I tried it, and clammy was worse!! for me... i just take a 5 min break every now and then, and my outside sleeve is less compression, so i keep it on longer. its; so hot in fla., that i wear an inside sleeve with more compression, but still have to take breaks... hope that helps... 3jays
0 -
3jay's where did you get an outside compression sleeve?
0
