GRRRRRRRRR I HATE LE..........
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Hi Binney-I swear i THINK she has what I had.Edema of the breast.altho my breast does not hurt anymore the one that had the bc and rads is still larger then the other one.The only Dr.that admitted it was edema was the RO.As soon as i took my bra off he said breast edema.GmaFoley has the same thing.The marks from the bra.
now you know i dont know anything really about LE sooo i sent her to the experts.
big huggggggggggg K
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lovtqlt: thanks for the liky.. i have to be careful even with herbs.. if they happen to rev up the immune system, i can't with ms.. another round of vanco, but, i don't use them orally.. we shoot them directly into the sinus cavity.. if it doesn't work this time, im scared then he;ll want a picc line, but i sure hope not, with the le!!!!3jaysedited to wish grma good luck w/ the drs appt!!!0
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joining you ladies for the first time since my LE started in April. I went to an LE therapist and we had it wrapped for 3 weeks and now I am in a sleeve and glove with fingers for daytime and a nighttime garment. It is so overwhelming to know this is my new "normal". My hand seems to still swell with the glove and sleeve all day as I just cannot seem to remember to raise my arm enough during the day and do those fist squeezes. At least my trunkal LE went away after rads so grateful for that. It is so nice to know we are not alone and this is not in our heads.
Way to go Cookie for doing what you love!
Maggie
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Ok one of you got out of my pocket and gave my surgeon a swift kick! I can't believe what happened!Let me list the things that happened so I can think this through.We first had a discussion about my breast being swollen and swells more during gardening, walking or when it gets hot..I also told him about you all suggesting that I find a lymphadema therapist.Then he checked my arms and said, "But there is no swelling in your arms"I told him I was told it could happen in the breast and not in your arms. - then he examined me - and agreed there are parts that are a "little" swollen and went on to tell me how well the scars had healed and there was only about a quarter of the breast that had issues, but that would heal in time...I took a deep breathe and mentioned a few stories I heard and suggested again that maybe, if I had someone who "knows" about breast edema, look at it and then give me some suggestions on what to do about it. He then repeated the same thing, like it was HIS idea.He went out while I got redressed and had the assistant call a few other doctors to see where the closest LE therapist was to me.He came back in - and started checking my arms for a second time and suggested I really didn't have any of the signs.He then asked me about the last mammo - I told him when I had it and he brought it up on his system - He was actually the first one that looked at it and didn't say everything is normal.... He showed me a ring around the outside of my breast and said, "See this white part - That's all the swelling around your breast" - WOW - He actually believes me!!!!!They are calling the therapist and gave me their number too. They will try to set up an appt for me. Unfortunately, it is about an hour away but there is an Olive Garden close by .
Question? What should I expect next?0 -
GmaFoley, you should expect to be taken seriously! Let's celebrate!! The therapist will measure you, feel the character of your skin, and listen attentively to your description of what you've been feeling and seeing. What your therapist does for you at that first visit depends on what she/he finds, but I think you can expect to have a discussion that focuses on an action plan.
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Go, GmaFoley!! You did that all by yourself and deserve a big pat on the back! It really does help to know you've got others who understand and urge you to push back with your docs, but only you can do it. Congrats, brownies and chocolate all 'round! Now, we will be in your pocket during your LE consult, too. :-)
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GRRRRRRRR I HATE LE- I just got my bill for 8 weeks of LE PT, compression sleeves and gauntlet- $1850 smackerals. I want to send it to the PS who I believe caused it in the first place.
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Mags, it's just plain difficult to get your head around the "chronic" part of this. "Forever" feels so heavy, so impossible, but thoughout our bc treatment we've all learned the "one day at a time" routine, and that really is all we need to cope with. Hugz has some strategies for reminding ourselves about self-care routines--she's engraved the word "breathe!" into some paving stones in her backyard to help her remember to take deep breaths every now and then. Tina's made herself a beautiful painting for her kitchen wall to remind herself to drink enough water. I like to remind myself of things like that (and the arm raising) by putting big notes to myself in the freezer. They always surprise me and make me smile, so I'm happy to do whatever it is I'm trying to remind myself about. Notes on bathroom mirrors work too, and especially notes on the wall opposite the toilet so you see it whenever you sit down. (As you can see, I'm trying to make peace with my dunderheadedness.
)Foley, you shine!
You did it, and I hope you also did something richly chocolate to celebrate your achievement. Onward to the therapist--anxious to hear how it goes. A good therapist is worth gold.Hugs,
Binney0 -
Binney- A good therapist is worth gold and I wouldn't mind giving all the $1850 to Jane and she'd be worth every penny!!! Just bugs me that everyone else in the "food chain" is making money off our BC and LE- at least that's how it feels.0
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Kate, misery loves company, and I have payment plan for over $1,200 I still owe for LE sessions beyond what my insurance covered last year. My LE therapist would call to see how much therapy I had available and it said I had sessions left. Obviously, their system is behind or doesn't know how to count! My LE doc put in for authorization for extra sessions due to surgery and swelling. My insurance co conveniently "never received LE doc's letter of medical necessity for extra therapy" while they were also busy denying my night vest pre-cert. I am just glad the place is letting me pay as I can. Stupid insurance co - if they had approved vest ASAP, I may have avoided additional swelling. But back to you - I am so sorry your PS switched your implants from the axillary area and may have caused your LE. Grrrr, he should have to pay that bill!
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Kate, I wish I had a better extended plan. My limit is around 700 a year total between my plan and my hubbys. I can see your frustration and I can feel it as my pennies dwindle due to LE care. Here is the cruncher. Today,I was on my way to the chiro and I walked passed the beauty salon and said to myself. " I remember when I could afford to go there but now I spend it on LE instead." Yup. it's a double Grrrrrr. grrrrrr.
At least we have a place here, where people understand.
So I validate your feelings. DARN RIGHT 1850 IS A LOT OF DOUGH! Triple grrrr. grrrr. grrrr on order for you!OK... Now I gotta go outside, dodge the mosquitoes and take a couple deep breaths so I can forget about my LE bills.
Take care.0 -
Kate, I wish I had a better extended plan. My limit is around 700 a year total between my plan and my hubbys. I can see your frustration and I can feel it as my pennies dwindle due to LE care. Here is the cruncher. Today,I was on my way to the chiro and I walked passed the beauty salon and said to myself. " I remember when I could afford to go there but now I spend it on LE instead." Yup. it's a double Grrrrrr. grrrrrr.
At least we have a place here, where people understand.
So I validate your feelings. DARN RIGHT 1850 IS A LOT OF DOUGH! Triple grrrr on order for you!OK... Now I gotta go outside, dodge the mosquitoes and take a couple deep breaths so I can forget about my LE bills.
Take care.0 -
I found out my insurance pays LESS for an LE therapist who is an OT. When I found this out I switched to a PT who is also an Le therapist and get more paid by insurance. Anybody else have this situation?
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Sorry for the delete, I double posted.
Tina, I just read your post. You poor thing
...You deserve a QUAD grrrr. Here it is! Grrrrr.Grrrrr...Grrrrrr. Grrrr. Now lets go breathe! 0 -
ugh!! $1850 ouch ouch ouch! i have used more than half of the 25 visits I get a year. I want to do recon this year but understand that I will need PT then too so may wait til next year to get that done.
Woke up this morning with what appears to be a "boob" on my left side --the LE side. Could this be fluid building up do to the great drainage now occuring in my arm and hand? It is not painful just a little squishy and giggly. Seeing the therapist today so I am sure she will look at it.
Maggie
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Ok the talk about money is really making me uneasy because - I have no insurance
. But if someone could help me with the pain in the breast, it should be worth being in debt for life...??? It seems the PT for this is LANA certified and well known with other breast cancer docs in the area, so here's hoping that he is as good as everyone says. OH OH OH I forgot to tell you one thing about the visit to my surgeon.. He also suggested a BMX to take care of the problem with all the scar tissue. - I didn't remember that one right away because that was sort of a sucker punch in the face when he said it. - Wasn't ready for that one even though that thought was in the back of my mind....
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GmaFoley--How convenient! An Olive Garden nearby your therapist. Hopefully she/he will be very knowledgeable about LE and you will celebrate afterward. They have great chocolate desserts.
So sorry to hear about the great expenses. It just adds more stress.
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GmaFoley: if you are completely uninsured, talk to the PT about a discounted rate. However, if you have medicare, it HAS to pay for LE treatment, make sure they code #457.1--post-breast cancer LE. Medicare doesn't normally pay for garments.
Check on your insurance coverage.
Typically, a PT office charges an inflated amount, like $330/hour and the "contracted" insurance rate is around $200 and the copay is 20%. However, I saw a group where insurance didn't discount them--I couldn't get Blue Cross to explain it to me--and my copay was $80/visit.
Luckily, I found my amazing LE therapist, who is an LMT, so she couldn't get reimbursed by insurance anyway, and her full charge is $75-$100 for 2 hours of amazing care. I pay out of pocket and it's less than insurance, and the care is amazing.
There is a Womans Health and Cancer law that states that all complications arising from breast cancer must be covered by insurance, including lymphedema.
Kira
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Kira - I have 8 years before medicare and hubby and I just got 40 hr a week jobs, so even though we are in debt up to our eyeballs, ppl think we should pay and haven't been able to qualify for discounts except for the no-insurance payment plans.. that is what my pain management doc does.
Edit: Thanks Kira for the heads up on the costs... I will let you know how this all goes.. It still might be nothing like the surgeon says but I rather get someone who can put my mind at ease, that this isn't trunkal lymphadema or help me if it is.
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Yikes, Kate! I missed your post on the LE bill--ooooooff!
I keep telling my DH that I screwed up--you're supposed to be independently wealthy in order to qualify for a diagnosis of LE and somehow I slipped through and joined this club anyway. You're so right, this feels like a food chain where the BC and LE are concerned, and we're at the bottom of it! Hope you were able to work out a reasonable plan for paying it off.<Sigh!>
Binney0 -
I am considering canceling my PT appointment. I retire in July, and early retirement is not going to pay me enough to pay my bills. It will come about $75 short without even considering food and car insurance. If I get disability retirement I should be alright but it will take months to make that determination, and we gotta figure, they will initially turn me down. I don't know. Maybe I'll go to this one and then tell her to give me exercises and information, that I cannot afford the copay until disability retirement gets approved. Oh Lord, help me. I've jumped off the cliff and am feeling the fall.
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Thanks everyone for the empathy and understanding, or as hugs4u put it- the VALIDATION! Still looking at my whopping bill this morning on my desk but your understanding really helped. Most of you have been dealing with this for awhile but it was such a shock. Guess I should have asked what everything was going to cost but just had no idea it would be so much. The amount billed to the insurance company was $4618.10 (where the heck do they get the ten cents?) which equals $577.26 a session. That seem a little outrageous. It's not like they're using expensive equipment, or any equipment for that matter- it's a bed, a few sheets and one LE PT. $256.00 for sleeves that are basically just a piece of fabric. Craziness!
Maggie- Hope your PT can resolve the fluid build up quickly. Good luck with your appointment!
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Dunesleeper, we're all here with our arms spread wide, ready to break that fall!
Excellent plan, to see the therapist and tell her your situation, and have her show you what you need to care for yourself until you can get help. Get her email and phone number too, so you can ask questions along the way.
Tell us how we can help!
Be well,
Binney0 -
Maybe this has already been done but wish someone would put out a dvd, like an exercise video, showing the self MLD that we could follow along to. I know I would pay for it. I think this is something that would benefit newbies and help those that don't have access to, or can't afford, to see a LE PT on a frequent basis.
dunesleeper- Good luck with the disability retirement. You have my empathy. My DH was dx with Parkinson's last year and we are still jumping through the Social Security hoops. It is very frustrating. They just told us he has to have a physical with their physician and assigned him an appointment on June 17th which is a Sunday on Father's Day! They told us he can't reschedule and if he doesn't show up his claim will be denied. If your experience is anything like ours they will try to deny your claim and if not make it very difficult to get it through.
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Now what do I do?? There is a waitlist til August for the Lymphadema therapist... They are reviewing my records and then I'm supposed to call them in a couple of days. Guess that is kinda good news - They must know what they are doing to be that popular???
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Kate33, I am pretty new to all this, too, and I have recently had a shock similar to yours. I am determined to ask about costs from now on, and I will tell them that I do not have any money so don't eff with me.
And I am sorry to hear about your husband still jumping through hoops for his benefits. Well, if they deny me, I will get a lawyer. There is one in my area who is a nurse and an attorney. She is my first choice.Binney, thanks for the open arms to break my fall. The support from all of you means so much to me. This kind of support is just not out here in the "regular" world. Lots of people think I am making a big mistake. They don't understand that I don't really feel that I have a choice. We just cannot know what a person is feeling unless we have been there. Even then, we all react in our own way. There are enough similarities, though, that we can come here and regain our sanity, knowing that we are not alone.
GmaFoley, that is a long wait. Are you having LE problems now? If not, just be very mindful of the arm or arms involved. I don't know much about truncal. Take time to raise your arms throughout the day. I actually gently rubbed my arm up from the hand to the armpit area, then over across the clavicles to the other side of my body. This is not the MLD that my PT taught me, but it was my best guess as to how the lymph system works. She said it was OK as long as I was pulling it all the way across to the other side. You don't rub hard. You do it very gently.
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Here is a link to the self-care videos from JoAnn Rovig: she doesn't specifically address truncal/breast LE MLD, but if you clear the neck, clear the opposite axilla and then move the fluid to that side and follow up with the arm movements, it should be good:
http://www.nwlymphedemacenter.org/index.html
She has broken them down, and the first segment is anatomy and the second is MLD.
When I first developed LE, I would sit in front of the computer, following along.
Let me know if these help.
Kate: the amounts that are submitted to insurance are insanely high, with the understanding that the "contracted" rate will be a fraction of that . If someone accepts your insurance, they HAVE to accept the contracted rate.
The people who get screwed are those without insurance: for example, a leg ultrasound to rule out a DVT costs around $200 with insurance, but they'll try and charge $1000 as the retail price. Many smaller, free-standing radiology establishments will offer a discount for cash. And there are often hospital funds for uninsured patients, if they meet financial guidelines.
I was talking about this to Binney this morning, and neither of us can stand the fact that universal coverage doesn't exist. Or that high deductible plans exist, or excessive co-pays. It's all wrong.
After I got a whooping bill, with my $80 copay/visit for lousy LE care, I was royally steamed and complained to Blue Cross and the hospital, and absolutely nothing happened. I switched to my self pay LE therapist....
Check out the JoAnn Rovig videos.
Here's a youTube video of self MLD for upper extremity, using stationary circles, but I prefer JoAnn Rovig's sweep strokes: but if you watch it to the end, they address breast LE--drain it down to the inquinals.
http://www.youtube.com/watch?v=BIB_2XPnSNg
Kira
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The CLT's office called me and gave me his office number and told me that I could call him anytime before my appt to talk about what to do. until I get in. He told me the compression bra would be a good start while I wait.. Anyone have a suggestion for compression bras? Just have no clue - I just about die in my sports bra but if that is what gets the swelling down that would be good.
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GmaFoley: check out the bra/cami's at the bottom of this page:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
Kira
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Kate: I totally hear you on this front--the expense is proportionally strange. I cannot figure out if we are paying for a rare skillset from a limited number of practitioners...or just receiving a message from insurance companies that LE therapy should be hard to get because it is labor intensive, long-term and not a money maker.
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