GRRRRRRRRR I HATE LE..........
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If you live near Freehold there is CentraState in Freehold which has a lymphedema dept......Liz
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JerseyGirl - yes do get a referral to a PT that's certified in LE treatment. I think truncal LE is harder for docs to acknowledge since you can't reference an arm swelling around a watch. Of course it's been my experience that docs don't ever want to acknowledge or admit that LE is a very real problem.
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I have truncal LE and actually was diagnosed by my BS, it could be seen on my mamo so really not so hard to determine.
then again, I was pretty clueless at the time
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PTS: how interesting that you could see it on a mammo.My experience with doctors is that they fail to see the truncal. The only reason I got a referral for PT was because my affected arm was just a little bigger than the other,,but my main problem is around my scar and under the arm. the whole truncal area was ignored by 2 doctors,,, one even insinuated it was all in my head.
Jerseygirl: I echo the others by saying, get a referral to an LE trained therapist. Best of luck to you
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yeah, I went for a biopsy (little scare~~) and I told the doc doing it that I had LE and she responded, yes I know I can see it! it was like a layer all over my boobie!
I think I am lucky that my BS is as good as she is as she was the one who told me
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My Oncologist said I had LE in my breast but the NP in the rads Doc's office said I didn't, That was in October. I saw the NP last week and she didn't want to write down the things I was saying about LE, just the things I was saying about my breast that might be attributed, in her mind, to radiation. I think she thought it was all in my head and after the Surgeon agreed with the oncologist and the LE therapist she still believes it's all in my head.
I follow my gut feelings in order to deal with breast cancer and LE because, everytime I don't I regret it.
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do they think we make this stuff up? Like we WANT to have LE? good grief,,,,0 -
My MO & RO were able to see my truncal LE on top of radiation fibrosis with an ultrasound. I just kept bitching about pain until they did the ULS Such relief to have both correctly treated.
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Same here. Grrrr!
Surgeon: "Oh, you won't get LE, I only took 6 nodes and you aren't overweight."
RO: "Oh, that's not LE, just a little local swelling/irritation."
PT: "If you start to get LE, you will know because your watch and ring will feel tight."
GP: "Surely you wouldn't get LE in your chest if you don't have any in your arm."
The GP is uneducated about LE, I don't hold it against her. The others just won't admit that what they did to me probably caused it! It was the MO, oddly enough, because she has always been quick to deny that the SEs from chemo and tamoxifen were really caused by them, who took one look at it and said "Looks like LE to me." I guess because it was not her fault, she had no problem admitting what it was! LOL
Finally got a referral to a LE specialist and naturally, of course that's what it is. We tried MLD and compression, didn't help much though. She did get me a sleeve and gauntlet to wear during times of high risk, i.e. flying, unusually strenuous activity, etc.
Most of what I know about LE, I learned here, though.
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Jennie: my surgeon said the exact same thing! Only 6 nodes and you are slim. Geez thanks,,,, I don't fault him for my getting it,,, it happens,, but dang it,, admit that I have it. Teaching your patients all the risk factors would be helpful. And yes,, basically everything I've learned about LE has been either here or Stepupspeakout.0 -
@ Jennie, ditto, everything I have and will learn about LE is here, not the Doc's office. Someone moved an old post about poison Ivy up and I couldn't believe what I was reading. Last week when I saw the Surgeon, the RO, and her NP. 3 professionals from which I attempted to extract info about LE heard me talk about getting back to the woods to go hiking and not one mentioned that getting poison Ivy would acerbate my LE.
I'm so disappointed. These are good Doctors but they are failing 20-40% (different statistics from different sources) of their patients, by not stepping up and dealing with the reality of this side effect from BC treatment. It is their responsibility, they need to provide up to date info and treatment options, not just a referral to an LE PT. I feel swept under the rug.
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Susan, I read that poison ivy thread with great interest too. Never in my wildest dreams, did I imagine that poison ivy could cause such grief with LE.0 -
I talked to a lymphadema specialist with the PT credentials and she said get the dr to give me a script and she could better evaluate, she did say it was close after surgery, so it could be either, no swelling in arm or fingers, so that I feel better about, but will see if BS will give me the script to be evaluated.... And from what I am learning, lots of things can set the lymphadema off, meaning internal issues too.
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Jennie,glennie, I told my md that I was afraid of getting le,he literally laughed in my face saying I wouldn't.well here I am!
Got a bad cold,even chocolate tastes bad if you can believe that!
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oh hugz,, that's a BAD cold. Feel better quickly!0 -
@ hugs, me too. Not only the doctor but the Navigators at 2 different hospitals ( I changed surgeons) said exactly the same thing, We don't see as much Lymphedema as we used to and you don't need to worry because you're not over weight and you're in good shape, here's a booklet on LE but don't worry I haven't seen anyone with a sleeve on in a long time. Really almost word for word.
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Raising my hand here, too. It's pitiful how little willingly our care providers omit inconvenient information.
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SusanSnowFlake, it's probably true they haven't seen anyone with a sleeve on for a long time, since they haven't sent anyone for treatment. Grrrrrrrrrrrrrr!
Binney
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Binney, you are spot-on as always. Point well taken!
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Good one Binney!!! I was getting on an elevator with a nurse at hospital last fall, she asked what I'd done to my arm, so explained about lymphedema - her stupid ass remark was "I know about LE I'm a nurse, and no one gets that anymore, your doctor must have done something wrong" OH my goodness, glad she wasn't my nurse!
I know I live in a very rural area, but even in the cities, and traveling and on air planes, over 5 years time, I've only seen a couple other women with compression garments on.
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My daughter works in NYC and she know many who have had Breast Cancer......none of them wear a Sleeve...they just do MLD....who would want to be questioned all the time about the sleeve? Liz
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I fly at least every other week for work, and in three and a half years of LE, I can only recall seeing two women in sleeves. My LE is mild, but if I'm not in my sleeve, my arm aches a lot during storms and other times when the barometric pressure is changing. That experience alone tells me I'd never want to be on a flight without being in the sleeve. Water bottles flex a lot during flight, and I take that as a signal of what's going on in the lymphatic system. We know that LE is pretty common in BC survivors, and there are tons of BC survivors. It just makes no sense to me that I'm not seeing more sleeves on planes and elsewhere.
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Carol....YOU are so right.....In my travels in the last four years I have never seen anyone with a Sleeve or Gauntlet........Liz
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I don't care if people ask. I just tell them it is to keep my arm from swelling more. They seem to leave the subject alone after that. What I don't like is the people who "think" they know everything about LE and proceed to tell me what I should and should not be doing.
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I have been trying to make my sleeves last since I'm now on Medicare, but I wear them when driving, traveling, if I'm doing much walking, house cleaning, my arm gets really achy and swollen if I don't and mine is mild LE too. Answering questions I consider to be a teachable moment!
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I wore my sleeve while driving 8 1/2 hours. Tomorrow we go on to San Antonio to visit for a couple of days with my BFF and then on to Galveston. YES, a real vacation -- no hospitals, no recovering at home, no doctors appointments. Sorry, I digress!!! Anyway, I did a lot of fist pumps in the car and stretching when we stopped. No swelling -- so far, so good!!!!!
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my insurance company refused my therapist request for a pump but after they denied it the first time I requested a second level appeal. I wrote a pretty good letter and I would be willing to mail it to you and you could take what ever you need from the letter if it will help. Just offering.
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I am so excited! My insurance company approved my Flexitouch without any issues. I received the phone call stating they were ready to ship my machine and it will be here on Monday. Then a few days after that I will have my training on the machine.
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YAY!!! So happy for you!!0 -
Chris, that is great! sometimes the insurance guys do come through as we want!
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