GRRRRRRRRR I HATE LE..........
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It almost sounds more like a frozen shoulder but I do get achey, tingling, and heaviness in my arm when it swells. This link might help http://www.stepup-speakout.org/What_ is _Lymphedema.htm.
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I will def check it out gmafoley, thank you for the link! My shoulder clicks when I move it with the achy pain and tiredness feel, its awful
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Thanks for the advice. My LE has measured my arms every week I see her and they have not gotten any bigger than they were when they were measured the first week of January. She said to me the other day that I needed to get this pump in the next couple of weeks, because she has to report to my insurance company my progress in order to continue therapy. Hmmmm..... I am thinking I may drag my feet and see what happens. How many times a week do you ladies have therapy?
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Sadly, the PT's have to document "progress" in order for insurance to keep paying. Apparently there is no such thing,, as "If I see you every month, it keeps the swelling under control". Nope, not in the insurance world. So we have to have "reasons" for the visits. SO I am wondering if she is telling you to get the pump, just so you can continue therapy?Edit: I try to go once a month now. Sometimes every 3 weeks, ,depending on how I feel. I only get 35 PT visits a year so I don't want to blow them all too early.
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NoMatterWhat - I had ALND surgery 18 months ago and developed mild truncal LE last summer doing water aerobics w/o garments because I mis-understood how the pressure of the water worked (you've got to be totally under the water...duh). An ultrasound showed LE on top of Radiation Fibrosis so I started PT in December. At first I went 3x a week, then 2x. Now I'm down to once a week. I finally have full ROM on my right side and I've learned to do MLD so I expect to be turned loose the end of April. Since the LE hasn't progressed to my arms from my torso, I am doing preventative things. I do MLD every day, sometimes twice, & have a batch of LE exercises to help the drainage. I also have sleeves & gauntlets that I'm supposed to wear when I exercise (even things like clipping roses) or do repetitive movements or fly. If you're arms aren't really swollen, I'm surprised to hear the pump recommendation since no one has ever mentioned it at my level. But then we all learn something new every day. Please keep us updated on your progress. I think someone recommended step up speak out on a previous page, but here's the link again. http://www.stepup-speakout.org/
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I feel so stupid!!!! I have been going twice a week since the first week in January. My insurance will pay for 75 visits in a year but with the proper progression reports I can get another 75 if needed. It will also pay 85% for the pump. I dealt with a mild case of cording at first, but have had my full ROM since the end of January.
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why do you feel stupid? I don't see why. Excellent insurance that gives you 75 visits, plus more if needed.0 -
I feel so stupid, because I didn't realize that this is not the norm and I could have been done with this treatment weeks ago. I feel so stupid because I trusted my LE to take care of me and not to even consider the insurance I have. Well, I have one more appointment on Thursday and that will be my last!!!!! I am beginning to understand why I am still seeing my BS, MO and RO every three months for check-ups. How dumb am I!!!!!
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NoMatterWhat - if your insurance pays for that much therapy you are very, very fortunate. Other than the drive, I'd be thrilled to continue PT. My PT has explained to me that I will have to continue exercising on my own every day or the tissue damage from radiation will tighten up again & of course impact the LE. And we all know we have to be proactive & vigilant with LE care or that can get out of hand too.
You say your measurements haven't changed, but are they "normal" or still not draining well? Maybe find another PT you can talk with about this? Or scale down to once a week? Before you quit, be sure you have all the tools to continue CDT at home.
I saw my MO once every month for the first year, with 3 month visits for RO & BS. Now I see MO, RO & BS every 6 months. You're not even a year out from surgery yet, and even less from chemo & rads. I think your 3 month schedule is pretty standard.
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NoMatterWhat - I'm hoping some of the women who are much more experienced than I am will post. There may be a very good reason your PT is recommending a pump, especially if you have more surgery coming up.
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the definition of stage 0 says that it's the latent stage and there is no clinically observable edema or swelling, so then logically your arm size wouldn't decrease and a pump wouldn't help, because there is no swelling...right?
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OMG! 75 Visits....GREAT Insurance.... mine only covered $2,500.00 a year....I am going on Medicare in April plus United Health...I will see what happened....Liz
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B123, definitely get any one of your doctors to write you a referral to a well qualified lymphedema therapist. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified...
Please do let us know what you discover. Gentle hugs,
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You ladies are just invaluable!!!!! I was sure hoping that when I finished radiation that the visits with at least my BS and MO would end or at the very least become farther apart. As you can tell, I am not a very good patient!!!
I actually had my arms measured in July 2014 after my lumpectomy and before my BMX and they have not changed in any way. I just keep thinking that the pump is maybe needed for when I have the revision surgery to make me completely flat. My LE and I have talked about that and she is against going flat and wants me to look into recon. NO, NO and NO.
Since it is a rainy night and I can't walk, I am headed to stepup/speakout after dinner.
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Why is your LE therapist against you going flat??? Honestly, I would think that is really none of her business. Nothing against recon,, but that entails probably more surgery than just a revision to go flat. I'm feeling annoyed at your therapist. Is there another one in your area where you can get another opinion about your LE therapy, the pump, etc?0 -
Oh Glennie, the usual. "You are to young to go flat". "What if you decide you don't like being flat". "You are only 54 years old, you don't want to mess with prostheses the rest of your life". Hey, this is my life, my decision and quite frankly if you don't like what I look like, don't look!!! But unfortunately, I have heard the same old thing from all my doctors and probably always will or at least until I get older. I live in a small enough community that the hospital has no other OT's.
My husband says do the pump since it is necessary to keep my arms from looking like his mothers legs. His mother has a pump and the compression leggings due to her diabetes. Her legs are so bad that she can hardly walk and I think that that is what he thinks is going to happen to me if I don't get a pump. I keep telling him that my arms will never look like his mothers legs. He tells me to do whatever I have to do to keep me alive and well. What a gem!!!!!
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Ahhh, the too young line,,,,, yeah, I got that one too. I've been half flat for almost 2 years now and don't regret it at all.Your husband sounds like a gem.
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NOmatterwhat. I talked to my MLD girl and she used the words overkill also for pump at stage 0. Then she said,maybe a 2nd opinion needed.
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here's a few questions.... will the pump hurt? I mean I know it doesn't hurt, but is it a bad idea to do on stage 0? Will it do more harm than good? Will it prevent progression? Will it cause progression?
And a few questions for me..... at the end of last year I was having trouble with cording and an overall sore arm. My PT (Lana certified) thought some of what I described could be very early LE so she had me start wearing a light sleeve to see if it would help. It did. Then in earely February I noticed some swelling in my lower arm, toward my wrist. I upped my PT visits to 2 a week, bumped into a 20-30 sleeve and started wearing it more religiously. I remembered how to do MLD (which I find hard to do), bio impedance was 12 (up from 8 - we are measuring again today). During my last three sessions we ended with 10 minutes on the pump. Each time the PT eas thrilled with the results. Today is an insurance re-eval, I'm hoping I will still get some covered visits. My PT suggested getting a solaris. She said it's not a necessity but it might be a nice to have....
so I guess I don't really have a question, just wanted to review what I'm doing with people who get it.
my wrist still looks swollen, and it has creases when I take off my sleeve/gauntlet. I suppose my goal is to keep it from getting worse....this will be an ongoing thing??
Thanks for listening. ... comments welcome!!!
Jen
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Yes I agree over kill. I am stage two and I don't have a pump. It's out next goal to try and get insurance to pay for one for my legs.
I see my oncologist every three months and it's been five years now. My surgeon dismissed me nine months after my mastectomy. My Radiation Dr. released me after three years after finishing treatment. Currently seeing a dermatologist for my hives I have had on my radiated skin for the last few months.
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NoMatter - I asked my PT today about the pump and she was astounded. No swelling, Level 0, you're learning to manage prevention not treatment. Have we missed something? Do you have pronounced truncal LE that you're trying to keep from progressing to your arms? I do agree your DH sounds like a keeper.
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I must have SUCKER written on my forehead, but you ladies have certainly opened my eyes and for that I thank you. I have no swelling in my arms, none in what is left of my breasts, nor around my chest. I do my arm exercises sitting at my desk (don't tell my boss), I squeeze a stress ball when I can and I do my exercises at night, as well as walk -- if it would ever quit raining!!!! The only thing I can think of is that I sleep on my right side and that is the LE side.
Yes, my DH has his moments, but I can't complain to much anyway. I think I will keep him for another 32 years. He even suggested we go see my BFF in Texas this year for vacation instead of going back to Key West Florida.
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Dr. Joseph Feldman specializes in LE diagnosis and treatment, and he is chairman of the board of LANA, the certifying body for LE therapists. I heard him speak at a conference a couple of years ago, and his topic was pumps. His view is that they should be reserved for those who don't respond to manual treatment, or who have special needs that make it challenging to perform self-MLD. I'm sure there are people who find great benefit from a pump when it's part of their effective treatment and not necessarily a second strategy, as Dr. Feldman suggests it should be. But what I do take from his remarks is that a pump is definitely not the first treatment strategy, nor necessarily an early one.
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Hi Everyone! Been reading through this thread, and I have to say, thanks for starting it way back when!! I had Stage 2, AND, 27nodes removed. Was told I wouldn't develop lymphedema--too young?!?, healthy lifestyle, etc…..well in Oct. 2014, had my BMX and in Dec., started having swelling in my wrist and thumb, still having it. Went to three PT's due to insurance reasons, had to switch, but ann finally happy to have my pt however, I absolutely HATE wearing the glove and sleeve!! I have two young daughters and was VERY active before all of this. I still have TE in and am having surgery and implants in April.
I have two questions:
1. I've been having, tingling, weird sensation on my bc side of my breast. TE still in place. Can this be breast LE? Feels heavy, fuller than the left side. UGH!!!!
2. Can my upcoming surgery make my LE worse? My PS says not to worry about and that it's not even LE---what does he know? Tells me to get my mojo back!!! How can I get my mojo back w/a puffy hand? It's not super swollen, but it's definitely different than my left hand.
Any advise would help. BC sucks!!!!!!! Why do we have to go through everything we did and STILL continue to feel the effects. I just want my old life back!!!
Gina
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Gina, those are great questions! I'm going to do some wonderin' and some guessin' here, because I'm not an expert and my experience has been different than yours. But maybe we can come up with a plan to get your questions answered.
I didn't have implants for my recon, so I don't know what the TEs feel like. Why not post a question in the recon forum, asking if anyone else had those similar tingling, fuller sensation, and they were worried it might be LE, but it resolved after the exchange surgery? I'd love to read some posts on that, because I think this is not such an unusual worry.
That said, tingling and a feeling of fullness are certainly hallmarks of LE. LE affects a full quadrant of the body. (Think of a vertical line from belly button to neck, and a horizontal line running around your trunk at your waist. The quadrant includes both front and back of the body.) So, on your node-dissection side, your entire lymphatic system has been slapped in the face. Have you had manual lymphatic drainage instructions that have you moving the lymph across your chest to the untouched armpit, or are you moving the lymph down the side of your body, to help it re-enter the circulatory system via the node clusters around the groin? If your LE therapist fit you for glove and sleeve, that's great, but if you're worried that the swelling is migrating to your breast and trunk, then I think it's time to make sure you're doing MLD, and that your stroke pattern is designed to avoid loading the chest area with lymph.
Other classic symptoms of breast LE are when you see bra marks on that side, but not on the other, both from the bra cup and the band below, as well as the straps.
I second your observation that 'what does the PS know' about LE. Classic problem!! It's of course possible that the TEs are running interference and causing some early LE symptoms that might resolve when they're gone, but if he's dismissing LE outright, then I don't think he's well educated about LE and its symptoms. Anyway, if you can learn anything from the ladies in the recon forum, that might help you put the PS's viewpoint in perspective.
As for whether the surgery can make LE worse, that's a really tough question. You'll want to be sure that the surgery and care team leaves your LE arm alone (no IV, no BP, even if it means they need to use an ankle or a neck for one of them, if they don't want to do both on the same, non-LE arm). Some women get permission to go into the OR with their arm wrapped (short-stretch, multi-layer bandaging--did you do this at any point in your LE care, or just go straight to the glove and sleeve?). I know that when I've had any surgical work on my LE quadrant, I've definitely felt extra symptoms for a day or so afterward. For me, that has meant revision work on my flap recon, and even the nipple tattoos evoked some symptoms. My LE is quite mild now--I hold my breath when I say that it has really improved in the past two years--so when I get a flare-up, it's usually in the form of a slight burning sensation, a heavy feeling, and sometimes the tingles, and always an ache. My trouble spot is my upper arm and right in my armpit, which sometimes feels like I've got an egg in there, and which sometimes does visibly swell. I haven't seen visible swelling of my arm for a long time (knock wood!). I also have a trouble spot on my side under the armpit, and around the back under the lat muscle. So I know from experience that the whole quadrant is susceptible to giving me LE grief!
Some women have reported LE improvement after recon is finished, and one thought is to ask that PS if, when he does the exchange, he can look for and remove scar tissue, if that's possible. Scar tissue makes it difficult for lymph to circulate. One theory on LE improvement after recon is that there may be some scar tissue reduction.
So, I'm guessing that you're seeing some lymph back-ups migrate through your quadrant, and I'm wondering if that's caused by TE pressure and is therefore temporary (hope!). I'm hoping you have had or have access to MLD training so you have a massage pattern that sends your arm lymph south, instead of across the body.
If you haven't read the amazing volumes of info at stepup-speakout.org, please do! I believe there's a whole page about getting ready for surgery, and the women who put that site together have given us so many resources, it's the best go-to site about breast cancer-related LE on the Internet, at least in my experience.
Best wishes, and I'm so glad you're doing your homework. Fingers crossed that it's a temporary issue from your TEs.
Carol
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Thanks Carol!!! I was taught MLD but I don't do it as often as I should. I'm a busy mom and barely get time to sit and do it. That said, I guess I should really make the time. I'm a very impatient person and would rather exercise over that. But I know I should. My PS said no to wearing the glove or sleeve in the OR. I will definitely check out the recon boards and pose my question there to see if anyone has had any type of experience. I'm just so angry about all of this. Prior to my dx I started playing tennis. I'm right handed and of course my bc was on my right side. My pt said I can play again, but have to ease into it slowly. This past winter, my girls really got good at skiing, and I used to love to ski. Couldn't this year b/c of TE, but I'm totally afraid of getting back on the slopes at all for fear of falling! Just not what I expected out of all of this. It's so unfair. They told me I wouldn't develop LE, and while it is mild, it is a fear and major concern. My oncologist says it's not LE either, as does my BS. So I'm not 100% sure who to believe. I do wear the sleeve and glove, but not 100% all the time. I'm super self conscious and don't wear it if I go out at night. I have to make an appt. w/my psych but even though I talk to her about all of this, I still feel so much resentment and feel that no one deserves this. Like someone here said in a prior post, I'd rather have chemop again than have to deal with this!!
Thanks again for your help. Sorry for my little rant!
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ciaogina, with 27 nodes removed, the risk of LE is significant. Whoever told you that you would not get LE is what we call a doc in denial. One very good study-of-studies found that mx with alnd has been found to result in a 30%-47% risk incidence for LE, and the studies never last very long, so that's within just a few years of surgery. It would have been far better for your surgeons to acknowledge the risk and get you to an LE clinic to measure your arms for baseline volume, so you'd have an objective comparison now. As for skiing and tennis, well... you gotta live, and giving up what you love to do is not living. Wear your compression gear for both activities and be attentive to hydration and low salt. Do MLD before and after (yes, it is an annoying use of time!).
This is the official LE ranting thread, so no need to be sorry for how everyone feels!
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Gina, I did not do recon, so I can't comment on TE's,, but I do have truncal LE. There is tingling and a feeling of "fullness". It sucks that your doctors minimized your risk! That happened to me too, with only 6 nodes and I am "slim" so "minimal risk". hahahahaha. My BS is really full of BS!!I hope you will get some answers over on the surgery forum
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Gina....I had 4 Nodes removed and here I am with LE.....my Doctor did not think this would happen to ME.....and Here I am.....thinking I am the ONLY one in Jersey wearing a sleeve....plus night compression.....I do not make it the night through....but I keep trying...Liz
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Only had 1 removed but also have an old shoulder surgery a while back that they must have knicked a node? I am torso and bilateral but stage 0/1 in arms If I keep diligent with mld and sleeves.
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