GRRRRRRRRR I HATE LE..........
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oufeild: just a yahoo for the double sleeve ( in black ) from the lymphedema sleeve co. cool, fits, does the job, and looks so cool...ck it out!!!......3jays
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3jays...ha...my laptop is sitting on that sleeve right now!
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@Minus...this is all so hard.....
It seems like the LE risk is impacted by some sort of x factor....perhaps how strong your personal lymph system is, or maybe even your family history of inflammatory illnesses.
Not having rads does help.
Anyone with a snb has some risk tho, I will leave it to the wise women to give you more advice than that.
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Minus2, those are for sure not dumb questions, and they're for sure about the rest of your life and the way you're able to enjoy it.
First off, here's a page you might want to copy off for your doctors so they can consider the risks involved:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htmLooking at risk percentages can really be misleading, since judging any one person's actual risk is impossible with our current knowledge of the lymph system. There's some research indicating that some of us are simply more prone than others based on the baseline efficiency of our lymphatics, but knowing ahead of time which of us are already compromised is not yet possible. Maybe some day!
Like you, my doctors told me not to worry about LE. I'm small and slight, had no previous surgeries or other trauma to the area, only one node removed on the cancer side and the other side was prophylactic. But I have LE in my chest, back, sides and both arms. It started in my chest, went into my right arm during a long air flight, and developed in my left arm after the use of a blood pressure cuff. Once I developed lymphedema those risk percentages didn't matter -- for me, it was 100%.
That said, at least half of us bc veterans never develop lymphedema no matter what we do, and I hope you'll come down firmly on THAT side of the statistics!
Only you can decide what precautions you want to take and which you want to ignore. Some women refuse all bp and needles in either arm after bilateral mastectomies. Others use only the arm with the fewest number of nodes removed, or only their non-dominant arm (since LE in the dominant arm can be more difficult to handle). A personal evaluation and baseline arm measurements by a well-qualified lymphedema therapist can be a huge help in thinking through how you want to handle your risk. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmAny doctor on your team can give you a referral.
I hope some of that helps. Please ask away if you have other questions. Let us know how we can help.
Be well!
Binney0 -
Minus2--Just wanted to chime in with Binney that there are NO dumb questions--we're on the wrong side of the statistics as we each "only" had SNB.
The National Lymphedema Network just came out with a position paper that all women should be measured pre-op and at all post-op visits--that wasn't and isn't the standard where I got my care, and ironically in Boston-- at Mass General, they measure with the perometer at all visits, pre and post op, yet down the street at Dana Farber/Brigham and Womens, they tell women not to worry about LE....
I agree with Binney, the odds are always in your favor. That said, the post op period can be a time of stress--but more so when there's axillary surgery.
One last word of warning, although every woman should ideally see a LE therapist for measurement, advice, etc--make sure they code that you have LE (and actually almost anyone who has had a node out has the risk of LE, which is stage zero--no visible swelling) so the visit is covered by insurance. The code=457.1
I think there are a lot of good therapists in Houston--I went to the National Lymphedema Network Conference last year, and there seemed to be a lot of therapists from there.
I don't know why surgeons need to tell you not to worry and there's no risk: there's always a risk, and all the studies show that early diagnosis leads to better outcomes.
Maybe shoot this new position paper their way....
http://www.avonfoundation.org/programs-and-events/lymphedema-information.html
And, in response to the knowledge deficit, we put a page on step up for providers--the newer version will have that avon white paper on it:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
You're aware and educated, and that is so important. Hoping the surgery goes well.
Please let us know how you're doing.
Kira
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Kira, Binney4, Cookiegal - thanks for your responses & good thoughts. I've tentatively identified someone I can see from the StepUp site, so I guess I'll try to get an appointment ASAP.
Thanks for the insurance coding tip.
Jan
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I have a question regarding flare ups? When I have one it seems to affect that whole side of my body..My LE is on my left side. I get it in arm, trunk and back. But when I have a flare up my whole left side of my body hurts. Even my left side of my face feels a little numb, puffy. I know that sounds crazy but does anyone else have these symptoms?
On a positive note, I just came back from vacation. I was in Jamaica. I did fine on the plane with the sleeve and I didn't wear the sleeve at all at the resort. I was concerned about the warm weather but I did alot of arm excercises in the pool and the lazy river. i also did water aerobics in the ocean. That was fun!.. When I got home, I had a flare up the next day. I guess I am thankful it did not happen on the trip
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njb: when i have a flare, i also feel it all over. and, it thankfully( i guess) happens AFTER i've overdone it. here's hoping you'll take youre regular care, and it'll recede. don't wait too long to get help, tho. don't let it get out of contol....and drink LOTS of water..............3jays
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My last chemotherapy treatment was the of end of March, my last radiation treatment was the end of May. Two weeks ago, my right breast, the one that had the cancer and lumpectomy became swollen and lumpy, my arm pit where the nodes were removed is swollen, the skin texture of the breast has the orange peel look and is reddish, I have chest pain along the sternum, headache, and heartburn... I went to see my radiologist oncologist, he took a chest x-ray, and ran blood tests. He said I had edema from the radiation... If my pain gets worse to come back. Everything that I have read about lymphedema is waiting for it to become worse is not the thing to do.
The next day, I was seen by a oncologist's assistant. (My oncologist went back to school to study brain cancer). The PA did a Doppler on my right arm to see if it was a blood clot as I had a blood clot in my left arm, which was caused by the placement of my port prior to my chemotherapy treatments. Everything to this point looks good, nothing out of the ordinary. All I ever wanted, was them to check with a mammogram or an ultrasound but the assistant said the oncologist says it's unlikely that it would be recurrent cancer. She told me the oncologist, who has never seen me, thinks the swelling is due to the radiation, to come back in 2 weeks. I'm not sure I can stand the heaviness and pain of the swollen breast... Is this different from lymphedema? Just shoot me now!!!0 -
Pasofino, how very frustrating and scary!
Good for the PA for ordering a Doppler to rule out blood clots, but you're certainly right that "wait and see" is not the way to go with this. It's true that "orange peel skin" is sometimes present with lymphedema, especially in the breast. The redness is worrisome, as it may indicate an infection, which calls for treatment immediately because this kind of infection can spread rapidly and become systemic. You might want to draw around the reddened area with a marker to keep track of it, and if it's spreading (or if your skin is hot to the touch or itchy, or you have a fever or feel flu-ish) do get help right away. I'm so glad the oncologist thinks you're not dealing with recurrent cancer, but you really do want to check this out promptly, because there is a form of breast cancer that also produces "orange peel skin," so that definitely needs to be ruled out as well.
Is this swelling different from lymphedema? Not very likely. There is sometimes swelling following rads, but not usually starting this far out. The person who can tell you if it's lymphedema is a well-trained lymphedema therapist. You need a referral from any member of your medical team, even your PCP if necessary. Here's how to find a qualified therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmMake a fuss if you have to, but don't take "wait-and-see" for an answer. JMHO. Please keep us posted, and tell us how we can help!
Gentle hugs,
Binney0 -
ok this is not an arm issue yet...I have struggled with eczema my whole life...regular contact dermatis...and a unusual version that is an allergy to fungus.
I had it biopsied last year...it left an ugly scar. At the end of the day it is not curable, just treatable with cortizone and anti fungal....
It is now AWFUL.....I am using the meds...I don't know what a derm would do differently and the biopsy was a much bigger deal than I thought...it took forever to heal...
somehow it is NOT on my LE arm right now but it is on that side, and it does cause swelling on my legs
ugh
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I don't know how many of you have a 'Ollie's Bargain Outlet' store near (mostly Northeast states) but their current flyer shows they purchased a supply of athletic clothing closeout with short sleeve compression t-shirts for $5 and long sleeve for $10.
Since several wear the compression shirts for trunk LE, I thought I would share it with all.
Sheila
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Cookie, we always worry about stuff on our LE arms: right now my dog has fleas--on Frontline--and my ankles are all bit up, and I'm on full out flea attack mode, because I don't want any bites on my arm.
If it's an allergy to fungus (like tinea versicolor), this is fungus weather--hope it settles down soon. And doesn't spread where it doesn't belong.
Oh, and the flea bites do make my ankles swell.. And itch like crazy...and the vet said not to switch to Advantix, but keep using Frontline and vacuuming and washing, etc.
We moved near the water, and I think they're everywhere. Yuck. Never in her life has she had fleas.
Kira
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Kira good luck with the fleas. My vet is saying that frontline doesn't work as well as it use too. His current choice is comfortis. However I too have flea bites on my ankles so I understand. They itch like crazy and yes my ankles are swollen. I think by bites are from the school grounds which is a sand flea but they still are horrible and there is always that fear it will get infected.
My arm is not doing good. It didn't appear that swollen to me until I put my sleeve on. I didn't think I was going to get it up to the elbow. I was very bad the past two night. I was so hot I took the tribute off so I could at least sleep. The back is better but not completely down. I have an PO appointment in two weeks. I am going to see what they think and hope they send me back to the clinic. I am finding that my chest, neck and back hurt by night time. I have switched back to a very loose bra hoping that the other was just causing the fluid to be trapped in my back. Life is so complicated with LE.
Wearing the sleeve and glove doesn't bother me and I don't mind telling people why if they ask. Like everyone says if you mention the C word they hush. The ones that bother me or the kids because there is no easy way to tell then why when they are all under 8 years old. Even my own child will still ask how long to you have to wear this? To my reply the rest of my life which makes her cry...how long do you think you have left to live. Got to love kids...they are so honest.
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I have a trick (old wives tale) to help kill fleas in the house. Take a shallow bowl (disposable plastic), cover the bottom with rock salt, slide the bowl under your couch, out of the reach of the animals in the house. The fleas will be drawn to the white salt and when they jump on the salt, they will dry out and die. I used it to keep the fleas down in my house and my mother used it for years as well. You do need to check occasionally to make sure that the salt hasn't drawn water from the air into the bowl.
Sheila
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Thanks for the tips about the fleas: I'll try the salt, and my vet sells a vet product--something like Specra 3D, that's expensive version of Advantix II, but they told me to stick with the Frontline for two more months??? She got the fleas while on it. I'm confused.
I think the comfortis is the pill, right?
It's always something.
KittyDog, hope you catch a break on the swelling soon.
Kira
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Thanks Sheila. I will now have to remember to add that to my grocery list. It might be good to put by her night crate too. As good as the flea meds are, the truth in the matter is...the flea has to bite the dog first for it to die and that takes 30 minutes. It that time...I can be eaten alive because they love me just like mosquito's.
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Passofino222: I'm with Binney, find a good LE therapist asap. I went for 8 mos with the docs telling me the swelling in my breasts was due to radation. No solution other than to say it would go away eventually. When I saw my LE therapist and mentioned it to her she gave me a good MLD across the chest and the result was amazing! I haven't been this loose since my surgery over a year ago! I can actually take my shirts off over my head and no longer have to crawl out of my clothes. (ahhh, sometimes it's the small things :-) Anyway, now when I hear that radiation line it gets my ire up. Make a fuss and get that referral. You deserve it.
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I'm happy to say I found a therapist I trust and I decided to move forward with the bandaging process (thanks to the advice from this forum :-) BUT something weird is happening . . . bandaging actually makes me worse! My therapist said in the 10 years she's been treating this she's never seen anything like it. My hand just blows up. We tried it for 2 days and decided to stop. She is doing research to find out if compression can have a negative effect on some patients (the same thing happens when I wear my sleeves and gloves). Right now I'm working on getting things back to where they were with my regular routine (Lebed exercises and MLD). Just wondering if anyone has had this experience or has heard anything about this type of reaction?
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Quiche, some people are compression sensitive and swell more. There was a study looking at lower pressure compression bandages vs. higher--and people did better with the lower compression.
Binney has issues where too much compression makes her swell.
Lymphedema is an inflammatory condition, and it sounds like it's touching off inflammation.
My swelling is primarily in my hand, and my wrap is low pressure--actually comfy in it's own weird way.
I definitely can trap fluid iin my hand with gloves--which I'm wearing right now as I attempt to batten down the hatches for Hurricane Irene. Man, it's always something...
Kira
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OMGosh Kira! Thank you . . . I can't believe you responded with a hurricane coming your way! My thoughts are with you and all the people back there bracing themselves for Irene. My biggest wish is that it will fizzle before it hits, but that may not be likely so my back up wish is for everyone to make it through safe and sound. I know there is much love and many prayers flowing in your direction. Hang tight.
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Kira--Will you have to evacuate? I am thinking of all of you in Irene's way and hope that it is not as bad as the media projects. Becky
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I am fuc--ng fed up.......got the sleeve for the 2nd time yesterday .....put it on today........WTF is with trying to get this thing on.............I put my fingers through a pair of Playtex gloves, broke 2 nails,,,,,,,,,,,and worked up such a sweat I had to put the friggin a/c on to finish....................Now I finally get the f/n thing on, and I can't pull it any higher..................I got enough fat hanging out at the top to do reconstruction on any 2 of you ladies.........just use my fat..
Ok, now its on,........................never saw my arm so skinny, itchy , hot, and then realize the "elbow" is not where it should be.................no more gloves (remember I said I tore them), so I pulled till I couldn't pull anymore.
Ok, now it is on, and in the right place..........within 2 hours my hand swelled so bad it looked like the ass end of a very chubby pig..............................why you ask....................well the assholes forgot to send the "glove" that was suppose to be put on with the sleeve...............so of course my hand swelled up so big i could have clubbed the person to death who forgot to include the glove in the package with the sleeve.......................so I'm back with my everloving bandages..............................didn't realize how easy the bandages were until I tried to put on the friggin sleeve....................Shit now where did I put that damn bottle of Vodka.............
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Oh yea,.......................and now I have to deal with some bitch named Irene, who is planning on turning my very beautiful shore home into kindling wood..............................its coming right across the Delaware Bay from Delaware, and right into my area which is 2 blocks from the Delaware Bay.................I expect to find a vacant lot when I go down after the storm has passed.............Floods, Earthquake, Hurricane, and now the friggin glove................oh shit I really do have to find that Vodka.
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Ducky, that is one nasty sleeve--and it sounds WAY too small. Ever see the pictures of poorly fiting garments on stepuspeakout--we've all had our experiences with lousy garments
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm
I know, weird that I'm posting, but we spent the day furiously putting all outside stuff away, and organizing the basement, so nothing touches the ground, and after that, you just have to watch the hurricane center.
We just bought this house--my husband's dream--right on Narragansett Bay--and we face due south.
I went to town hall, and was told they'll tell me if I should or have to evacuate. My older daughter lives an hour away in metro Boston, and she's ready to take in us refugees.
My next door neighbor is a highly ranking person in the National Guard, and all his stuff is out--I figure he's deployed.
So, just waiting and watching, and wondering how long we can live on kettle corn....
When they tell you to pack an emergency bag, no one mentions LE supplies, but they'll be in it.
Kira
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Fingers crossed that Irene treats you nice. All we are getting is some wind...we really need the rain but there is only a 30% chance. Lots with out power closer to the coast.
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@Quiche Bandaging makes me worse too!
Even my juxta-fit if it's too tight makes me swell. I think kira nailed it on the inflammation...I am extremely sensitive to it.
The good news is the right amount of compression takes down my swelling quickly.
I am back in NYC...we are in the wide part of Manhattan...I think we will be fine.
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Quiche, how frustrating!
The first time I was wrapped I swelled too. Still happens if I wrap too tight -- and "too tight" for me means hardly any compression at all. Fortunately my therapist had seen that before and immediately backed way off on the compression. The next problem was garments, which I reacted to as well. There are only two fabrics I can tolerate, as they have to be soft with a low containment factor. One of the ones I can handle is actually a fabric for neonates!
Like Jo and Cookie, hang in there, experiment around, and you and your therapist will come up with whatever works for YOU.Ducky, abosolutely maddening! I'm so sorry the struggle goes on for yet another round. On that garment fitting page Kira posted, look for the donning devises too -- you might find a Slippee or an Ezy-as a big help. Once you have the right fit, of course.
All you gals facing off with Irene, my heart is in my throat watching that monster creep toward you.
Packing your emergency bag, don't forget your antibiotics, plenty of lotion, night gear, and your therapist's phone number. I'm thinking the barometric changes involved could be something to watch out for, so wrapping might be a good option as the storm approaches.Prayers for safety. Stay well!
Binney0 -
DUCKY:
I know how you feel and was there myself until I found a GREAT COMPANY whose designer measured me and got me a fit in one trip after 2 years of incredible frustration. I cannot say the name because there are trolls out there from other companies, but if you want to know send me a PM.
It can be better once the right fitter and garment meet!
Moogie
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This is my second round with this bullshit, and I am sick of it............This is suppose to be one of the best places in our area..............I will be going to the therapist on MOnday .......I will be taking this "evil devil" with me, and see what she says ..................maybe its something I'm doing wrong, but I'm sure the friggin glove not being sent didn't help................fed up
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