GRRRRRRRRR I HATE LE..........
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Barbara, what a story of misguided medical behavior. Many of us have lingering anger/issues with how we've been treated.
Several of the women who post on these boards are bilateral: Binney, Moogie, Jane/Onebadboob and many others. The three women I named got LE with just a few nodes out.
LE sucks, and to feel as though your voice wasn't heard makes it that much harder.
After your unfortunate experience with the LE therapist do you have a good therapist now?
For me, finally finding someone good has been the key to keeping things managable. But it does require management.
I hate to think that there's nothing that will work on your left arm. It sure does sound like you've tried everything, but still...
I'm glad you found us--the women on these boards are amazing.
I see by your signature that things changed last November--it sounds like you are going through a lot. Please let us know how we can help.
Kira
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Aw, Barbara, what a rugged journey you've been on!
I've read some of your other posts as well. We were diagnosed in the same year -- my six-month surgeon visit was that awful morning of 9/11/01 and no one could concentrate. I so wanted to feel like I was crossing some invisible threshhold into wellness with that visit, and instead it was a morning of unspeakable loss for everyone. It's hard to have that in our memories, all stirred up with the bc. Like you, I'm wildly disappointed to have bilateral LE. It's like having permanent static in your brain, a constant reminder or all you've been through and all the uncertainty that lies ahead. I really admire your spirit, and I'll be looking forward with you to a quick and complete response to your present treatment. You go!
As for the LE, I'm with Kira in suggesting that if you don't have an on-going relationship with your LE therapist, a new one might be in order. Someone you trust, who's willing to hang in there with you and try everything to make it workable can be a real boost. A renewed Therapy Intensive, perhaps, with new exercises while wrapped? Kinesio taping? A refresher course on self-MLD? Someone with the skill and patience to work on breaking up that fibrosis? Here's information about finding a well-trained LE therapist, in case you're in the market for a new one:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmAt any rate, we're sure here for you!
Please keep us posted.Very gentle hugs,
Binney0 -
Awe Barbara...I am so sorry.....so sorry.....Kira... I am like you....I am a bad patient now days. I was a great patient for two years of active treatment.....but now...not so much.............Kitty......great spring photos......
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ohh, Barbara, im so sorry.. i have a touch on the (good) hah! side, the right side is difficult, and both hands swell.. thanks for the MSG story , kira. i knew about my migraines.. just beginning torealize what salt/msg will do with my LE. I see my therapist next week. have avoided going bc i owe so much $$ already the hosp. haunts me. but i figure, they can haunt me for more, and i'l go for more sessions than last time. i saw her at a conference; she's such a doll! got upset i was in the wheelchair, then, did an on the spot check of my arms and hands, said come in ASAP and wrap till then. guess i was fooling myself on how serious it was getting... 3jays
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I don't post here often because I have a very mild case of truncal LE. But I read all your posts because I would very much like to avoid getting more. My work can be very physical, and I did a lot this weekend and now I'm pretty swollen under my arms and towards my back, especially my right side (non-cancer, but more swollen from beginning) So I'm wearing compression shirts this week, and will be bouncing on a rebounder when I can. I also got a lower-body massage on Saturday - could that cause swelling in my upper torso? - she avoided anything above my lower back, except for some very gentle neck work.
I've been lucky so far, in that I've done a lot of things that could cause problems and they haven't, but after reading some of your posts I realize that I've just dodged the bullet. I'm dealing with an arm injury now that has required a PT to massage my left forearm really deeply - there's been no other way to break up adhesions and tendon problems. So far, no swelling from that - I've checked religiously, but I know that I'm skating on thin ice, so to speak. And I may end up having to have surgery on that arm, which is a worry, for several reasons. I do what I can, but I also realize that there's really no way to predict who will get LE and who won't, or when. So any advice is helpful. I appreciate it and wish there was a cure for any of this, from the initial bc to the SE to the LE.
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Hi all. I need some advice and, frankly, some hand-holding. Six months ago, I had a birad 4c mammo with U/S because of a "suspicious lymph node" in my axilla (site of original BC). My surgeon urged me to wait 6 months and see if it grew. (He thought it was a false positive, was skeptical about a non-surgical biopsy and he didn't want to subject my axilla to trauma needlessly.)
The U/S is in a few days and, if the thing has grown, I'll have to have it biopsied. If past is a predictor, a biopsy will greatly exacerbate my LE and my axilla will take a long time to close up. I hope it is just a healthy -- but enlarged -- lymph node that somehow was overlooked in the ALND. I want to do everything possible to make sure that the lump isn't inflamed (temporarily enlarged) the day of the scan. I normally walk to the cancer center (it's about 3 miles). Should I drive instead? How about exercising this weekend? Would wearing my night garment right up to the time of the appointment help? Any suggestions? I'm willing to try anything .... KS1
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KS1
I had a similar experience recently. I found a lump ( turned out to be a cyst) on my right side just below axilla. I have truncal and arm LE. I was anxious about possible biopsy. I talked to my LE therapist who offered suggestions. I had a 3 month ultrasound and it had not changed so no biopsy. Yeah. Do you have a LE therapist who could advise you? Does your LE get worse with exercise? If so I would drive. I hope all goes well for you.
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Nicole--so glad it was just a cyst
KS1--the advice I have is related to fracturing my LE hand--the trauma did make things worse, but they are settling down. What I've done is to wrap every night and wear day time compression more often, and at the start, I saw my LE therapist weekly for MLD and wrapping.
So, what I'm saying is that the most important thing is that you get the treatment you need--can they just do a fine needle aspirate? And, after you deal with the medical issue, you'll ramp up your LE care and bring it back under control.
I think you should drive, and have someone with you in case you need a biopsy. Until the scan--just follow your usual routine.
If anyone does something invasive on your LE arm, my LE therapist, per Robert Lerner MD, has me take 3 days of antibiotics. It was the protocol when he ran his Foldi clinic model in NYC.
I just hope it's nothing serious, and you don't have to have any invasive testing. But if you do, consider prophylactic antibiotics and wear your night garment and do what you need to do to minimize inflammation.
I hope that helps.
Kira
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I have some friends who blog. They often tell me I should blog. I just can't. While I like writing, I think my attitude would get in the way of anyone wanting to read my blog. Thankfully, my snarly attitude is understood here, given all the levels of complications and frustrations we have due to LE. Can't do a "regular" blood draw, nor a regular blood pressure, nor regular clothing, nor regular hopping into bed and skipping MLD/compression couture....doctors who do not get it...people who have no idea what "chronic" means...not managing the weather changes...not blogging material for me. Possibly for a better or more tolerant or more creative writer. I'm just a griper.....who fits in here. Thank you!
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KC--I never, ever consider you posts snarly or even rants or gripes. I think you handle this miserable condition with grace.
I do wake up in the morning and I'm wrapped, and I can't just hop out of bed, and I resent the heck out of that. The chronicity, the time, the limitations.
One of the women who used to post here, KAK, she has a blog, the Accidental Amazon, and she has an edge, and personally, I appreciate her blogs--they're well written and I can relate. She doesn't have LE, but she's a PT and and has significant side effects from treatment. This last blog was about surgery and reconstruction.
I sometimes take writing classes--it was leaving one when I fell and broke my hand--and the first one was very close to my initial treatment, and I wrote some raw stuff, and the other women in the class who had bc said "Ever thought of journaling?"
Kira
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I did everything I could to have my arm as small as possible for my U/S on the thoughts that a swollen arm might correspond to a swollen axillary LN. I avoided all salt, drank even more water than usual, wore my solaris extra (and right up until the U/S), had an early AM U/S, exercised less this weekend, and did a ton of deep breathing right up to the U/S. I am not sure which, if any of these things was responsible, but the U/S revealed that the mass in my axilla has not grown in the past 6 months. Indeed it is slightly smaller. The mass was 10 mm x 10 mm x 6 mm, but now is < 10 mm in the largest dimension which is too small to trigger further investigation. The radiologist (who was insisting I have a bipsy 6 months ago) is just recommending a repeat u/s in 6 mo. Yippee - KS10
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KS1 - That's GREAT news! yay!!! 0
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Yeah. Very good news indeed. I am sure you breathed at least one sigh of releif after the U/S.
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yippie! good news now you can have that brownie!
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Thanks for your support and for sharing my good news. To celebrate my good fortune and pi day (3.14 or March 14th), I made a chocolate and banana pie. My kids and DH were delighted and surprised to have a pie on a school night. A yummy day, all in all. KS
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Just need to vent a little.
Came across an article today that said if you were thin, you would lessen your risk for LE. If you were in good shape prior to surgery, you would lessen your risk for LE. If this ... if that ... well, I was all those prior to BC. I was extremely fit, I was extremely thin and guess what? I still got it! GRRRRRRR!!!!! I hate those kinds of articles and it fits in the same category as those that seem to imply if we'd done, or we hadn't done that we wouldn't have gotten BC. Well, according to their 'lists' I did everything right and I still got BC. I didn't have any of the risk factors for lymphedema either ... I didn't have radiation, I didn't have mutliple lymph nodes taken out and I still got it. Ugh! Read that article and it made me angry! Just needed to vent, ladies! GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR!!!!!
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Dawn-Hope, I didn't have the risk factors, other than the radiation--which I got AFTER I got LE.
Nordy talked about her LE therapist doing a questionarre for risk factors: did you swell while pregnant? Tend to swell easily? Have pre-eclampsia?
The studies are showing a strong genetic component and an inflammatory component. At the NLN conference, Jane Armer presented a picture of a woman who had 1 node out, no radiation and a huge arm.
I don't have any family history of bc, and I think I was doing everything "right" as well.
You know what really stinks about statistics (and LE)? If you get it--it's 100%.
Vent away, we got the short end of the stick here.
Kira
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bumping for all our GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR sisters......
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Kira - I've never been pregnant, so I don't know on some of those questions. But I used to run and was an avid outdoor walker & hiker prior to bc and my fingers have always swelled when I exercise, especially in the heat. It's interesting b/c that's when I knew I had a problem ... I went for a long walk in the heat & humidity last summer prior to my exchange surgery... my fingers swelled up but they didn't go down. So far I only have the swelling in my fingers ...
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Dawn-Hope, I remember another question was varicose veins.
I have this vivid memory of roller skating, and not being able to make fists at the end, because my hands were so swollen.
I started with swelling in the top of my hand, it did move into my fingers, and now is back in the top of my hand, a bit in my palm near the index finger. At times--especially with heat--my fingers will still swell.
I did a lot of finger wraps when at home to bring down those fingers:
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Hi Ladies,
I've been away from the boards for a while as life gets very crazy for me too. I'm still taking care of my elderly mom and have a four-month old puppy as well. Work has been very hectic too.
My LE therapist told me that the FDA approved the cold laser for LE. Have any of you tried it? If so, did it work? Is there anything I should be concerned about with it (like side effects)?
Thanks to all of you who post on this subject. I feel encouraged and like I'm not alone with this struggle. It can be very frustrating on a daily basis. My truncal LE is just miserable by the end of the day. It makes me very irritable! I SOOOO appreciate all of you!
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thanks for the info gals. i found that a cheap sleeve would be great, in the beg.. it kept it down when i was out, and not wrapped. im gonna lokk into that one, Sleeve Ninja..$$ is right, thats' for sure. i have a "mild" case, in the beg.. but mistkakes i make, like over doing, salt, msg makes the swelling WAY worse. then, its back to wrappig, and night garments.
Just remember , its' a pain in the Patootie, but its' DOABLE.. just a shame that some of us have to work harder than others... you gals ROCK! 3jays
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I got my custom sleeve! I hate it. I don't like the material one bit. It doesn't give which makes it a pain in the you know where to put on. Then my arm injuries start hurting from pulling it on and we want mention the mouth pain from my hand loosing it's grip and wam. Oh joy. I also don't like having a seam. Just because it hits right where I have some nerve damage. My tribute dose the same thing but once I get to sleep I don't notice it. Daytime just wears on my patience and then I end up taking it off. Next pay check I think I will order the size 5 for days I can't stand it because the nerve damage will never improve.
Something good to say. I love the Healistic Gauntlet and my hand is not swelling much at all. Actually right now my left looks more swollen than the right. Darn popcorn I ate yesterday. Why oh why did they have to cook it while I was in Target yesterday. I love there popcorn well actually I just love popcorn. lol I love it better than brownies!
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Hello everyone I'm new here. Wanted to ask a Question.
Has anyone here tried the "Silver Wave" material? It was mentioned on another board (Breast LE I think) and one person was saying it was really helping her breast LE.
It apparently is not as tight as your typical LE sleeve, but has a "zig zag" type weave that, along with your normal movement, stimulates the drainage.
Anybody have luck wtih this? I am thinking of buying one (they have for arms trunk legs, etc).http://www.store.lymphedemasleeveco.com/index.php?dispatch=products.view&product_id=29779
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Springtime, there's a long thread about it, I believe it's a called a new kind of LE garment. Here's the link:
http://community.breastcancer.org/forum/64/topic/764107?page=4#idx_119
Kira
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Rocket, your question about the laser is a fair one, but it's a subject that has caused no end of, uh, discussion here before.
If you enter "laser" into the search box above and limit the search to the Lymphedema board you'll find lots of long and contentious discussions of the pros and cons of laser use.Just to clarify, the laser has not been approved by the FDA, it has only been cleared by them. Though that seems a minor difference, it involves the fact that approval requires wide-ranging research that shows both efficacy and safety, and clearance is far less strenuous. A significant difference!
Keep us posted!
Binney0 -
May I please ask a question? I don't post here very much at all, but I read all your posts frequently. I have a mild case of LE, but there are times when it is much worse than others. My question is ... what about exercise?? I have to lose some weight.... quite abit actually, and I'm wondering what to do. We live on a beautiful lake and when summer eventually arrives.
) I can't wait to get into it for a swim... will that aggravate the LE? If so, what else could I do?thanks alot , you guys are great.
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Kathy, how wonderful to live on a beautiful lake. The key to exercise is to ramp up gradually and be sensitive to your body. In general, swimming is a great exercise for LE. Some women who post here have had some issues with swelling, but overall it's a great thing to do.
Here's a link to aqua exercises from Joe Zuther's blog:
http://www.lymphedemablog.com/2011/01/20/the-benefit-of-aquatic-exercise-for-lymphedema/
And, in general, you can walk/run, and anything that works your arms should be done gradually and with compression.
Enjoy the lake!
Kira
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Kira, thank you I found the thread!! Very helpful, just read the whole thing. I am also PMing with Cookie on her "fabric in the bra" method. They need to make a bra or T-shirt out of this material for those of us with breast and chest and rib LE!!
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Thank you Binney for both the clarification and the cold laser resource. I will look into it. You are awesome!
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