GRRRRRRRRR I HATE LE..........
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I second what Quail and Kira said - I have very unknowledgeble docs in my small town and without this LE board, I wouldn't even know I had truncal LE and still be in major pain....
BTW - even though the surgeon said I couldn't see my LE therapist for another 2 weeks - I did my self MLD last night - didn't know if I was really supposed to or not - breast swelling is down a bit this morning but that axillary is a killer to try to divert fluid - I have this bump between the top of my clavicle to my axillary scar - it just seems to pool there - any suggestions on how to move it - I can't move it to the other side because that axillary won't handle the load, so I have been trying to move it down but it gets stuck right in that area - any suggestions?? Of course - Always on the weekend, no smart LE ppl around in town and it is going to be HOT yet again....
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Gma, self-MLD is still MLD, so do be careful!
Are you able to use a sports bra or other compression 24/7?
The area you're talking about is very hard to drain--I deal with that too. Be sure to talk to your therapist about it and get an efficient route for moving the fluid out of there. For me, I always start with neck node clearing, including the area just above the clavicle. Then I move that fluid up, into the area above the clavicle. I do it like every other area--start close to the clavicle, moving the skin very gently in the direction I want it to go. Then move my fingers lower and do it again, and so on. Then a few sweeping strokes over the whole area, and repeat the neck clearing. See if your therapist suggests the same kind of pattern. I also use a Kimbe Swell Spot--works really well to reduce the area, but it looks like I'm smuggling grapefruit!
Be well!
Binney0 -
Binney - Thanks for the warning - so I probably should just be doing my breathing, elevation and water for the next 2 weeks?
Before the Lumpectomy last week, my LE T and I had a plan that worked - moving everything down each side separately and splitting my body in 2 halves... That helped the other axillary problem - I just move everything down toward the inguinals(sp).
Since the surgery, which BTW wasn't anywhere near the axillary scar:
I have that swelling between the clavicle and axillary scar from last years surgery
MY DH says he sees swelling on the right under my breast..
and the new edema under the new scar (about 3 o'clock) where it was pooling before
Its just frustrating when they say not to do any MLD in one breath and oks me to go back to work in the next breath.... I can't go back to the fabric store with all this swelling!!! GRRRRRRR
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OMG.I had to read 4 pages to catch up.All kinds of bad crap goin on.
I am happy to say im goin to be evaluated on Wed.Still have not looked into anything as far as bras go.I refuse to do anything till im evaluated.I have lots of questions but im happy to say as of the last couple of days im pain free in the trunk and breast but still doin all the things i should be doin.
keepin all of you in my prayers.this LE really sucks.
went all week outdoors with a long sleeve shirt as im scared to death of getting just 1 bug bite.Have all kinds of oils that helped but im still scared of this new life i have to live.Isnt the BC enuf?
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Ok... My iPad somehow kicked me out of the discussion boards and I ended up on the breast cancer.og home page. Let me preface this my saying I LOVE this site... But someone else go on there and look at the rotating banner at the bottom and wait for the lymphedema one. Look at the sleeve the "patient" is wearing... Is it me or is it a bad fit?? It doesn't look high enough on the arm.
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GottaloveNED - YES! I'm not an LE oldtimer but even I know that sleeve is too low. Unless there is a reason for it fitting like that which I do not know...?? Yikes. 0
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GottaloveNED - I agree with Dawne-Hope - That is way too low for a sleeve! I am brand new to this (June) and I know that one
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Does anyone's hand LE feel tingley or like a little bit of burning?
Just wondering becuase one of my docs floated the idea it could be delayed neuropathy from radiation as opposed to LE.
It's just odd that my barely visible hand LE is so "noisy"... I never really felt the swelling in the arm at all.
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cookiegal - Mine tingles. When I'm having a flare it burns on the inside ... it is not red, not even visibly swollen but I know I'm in trouble and I need to do everything in my arsenal when it burns like that. I didn't have radiation ...
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Dawne-hope....yep!
Thanks for the insight!
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GottaLoveNed, nice catch on that home-page picture.
<Sigh!>Cookie, does your whole hand tingle, or just one side of it? Just certain fingers? Any weakness in that hand? Did the rads onc do multiple fields? Late-occurring radiation neuropathy is (happily!) rare, but it's associated with multiple (even overlapping) radiation fields, and incremental weakness in fingers or hand is usually part of the mix.
Then again, tingling is one of the early signs of LE. Try some MLD and see if that relieves it.
Hugs,
Binney0 -
Binney,
Multiple fields? I'm a little more worried now about my LE. I used to just have two fingers tingling but lately its been my whole hand and I am staying more swollen. I know I had 4 fields done that included the superclavicle. What can be done about neuropathy if that is what it is.
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Thanks Binney. It is in the lower sections of my four fingers and to a lesser extent in the lower top of my hand. No weakness. And actually I didn't even have the boost.
Probably LE, makes sense. It seemed unlikely mine would just live at the top of my arm forever.
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Lee, have you had good lymphedema therapy? Hands are very hard to get under control, but once you have a routine that works for you it should be possible to keep the swelling fairly stable. Of course we all have flares
, and it's really discouraging to have to try to regain control. If you're having trouble with more swelling, or swelling that's harder to reduce, do check in with your therapist for help in strategizing. There are lots of ways to make this better, so insist on getting the help you need. Neuropathy from radiation is different from LE, and I sure didn't mean to alarm you!
If you're experiencing increased swelling, then that would be the likely cause of the tingling, and regaining control of the LE would go a long way toward solving it. Unless you're also experiencing weakening of your fingers and hand I sure wouldn't worry about neuropathy. (And if you are, then prompt diagnosis and good PT can help delay progression and maintain strength and range of motion). For now, go for getting the swelling back in control. Summer's hard on us lymphers, but fortunately it's almost cool-off season. Keep us posted!
Gentle hugs,
Binney
P.S.-Your avatar is a real treat! Are those two loves yours?0 -
I broke down tonight - I took a real pain pill not just tylenol - this will probably make you laugh and now that the pain pill is taking effect, I find it kinda funny too.... Ok, My DH and I went to a produce store... I decided to go around and see how big my boob was getting, so I started picking up produce... mind you, this was with no pain med in my system ROFL..... Nope not an orange, nope not a grapefruit, hey honey look at this big cabbage... yes you can compare it to a small cabbage or cantalope... They had a few Walla Walla Onions that were about that big too.... still trying to figure what to do but went back to my breast binder to see if that would help... no MLD for me for two weeks... this is gonna be fun - Ladies, I apologize ahead of time, I will probably keep this board busy with my whining...
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Gma Foley,
I know this is a trial for you, but you sure keep us laughing! Keep up the deep breathing, and then whine away! After all, Grrrrr is what it's all about here.
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Got so PO'ed earlier this week. PS actually told another BC patient (Tram flap immediately with BMX) that she couldn't possibly get LE since only two nodes were removed. OMG! Shared with her just how wrong that is btw.
He knows I have it but bet he doesn't realize only had two nodes removed myself. Sigh
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Galsal - I only had one sentinal node with micrometastises taken out but with the addition of radiation where they totally radiated all my nodes... well truncal LE is where I am at... I'm glad I decided to put the binder back on yesterday my underarm was so swollen it scared me
Quall - the only way I will survive this is by finding something to smile about..
This one below wasn't funny but it reminded me of what we have here --- Thank you Ladies for understanding.
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Galsal--I only had two nodes taken out, mammosite radiation, and no chemo and still have LE. My BS and Radiologist still cannot believe it. My therapist had to send them my measurements to convince them! They kept saying I only had a 1% chance of getting LE. Well someone has to be the 1 out of 100 and I was it!
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Gma, from one "trunk" unpacker to another:
http://www.stepup-speakout.org/images/Truncal cartoon01sm.jpgGalsal, I had one node removed on my left side, prophylactic mastectomy with no nodes removed on the right, and I have bilateral LE. SO GLAD you gave her the facts, and I hope she'll get some good risk reduction tips too!
Becky, you should be receiving thank-you notes from those other 99 you let off the hook!
Hugs and empathetic GRRRRRRR!s,
Binney0 -
Binney4, you seem to have alot of knowledge about lymphedema!
I had 2 lumpectomies,lymph node dissection (left side) chemo, and radiation in 2009. This Spring I noticed numbness in my left forearm with some swelling as well as swollen nodes in my neck. It turned out that my cancer came back and spread to my left axillary and nodes on the left side of my neck. My dr said that the nodes were pushing on the nerves in my axillary and may also be impinging on my lymph drainage out of my arm. I am doing some self massage to get the fluid out and wrap my arm and hand every night.
With the lymph drainage technique, I was taught to bring the fluid across the upper part of my chest over to the right axillary where it could drain (in addition down the left side of my torso through the groin). 3 weeks ago a PET scan showed my cancer spread to lymph nodes in my right axillary and I am wondering if I made it travel there!
The lymphedema has been causing my hand to swell lately and I was wondering if anyone has a good technique to prevent this. I was told that its important to prevent the swelling here because it is harder to manage in the hand. I am so upset about the lymphedema. Not only do I have to wear a wig, I have no eyelashes or eyebrows, and now I have to buy long sleeve, generously proportioned garments for work to hide my swollen arm which to me looks deformed, and I can't wear my wedding ring!
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GMA..................I'm with you..............I hate LE, hate cancer, hate my big fat arm, hate all LE therapists, hate wrapping, hate friggin sleeves, hate doing the friggin exercises which do absolutely nothing to help, and most of all, right now I hate myself, for not taking better care when I was younger, and put everyone else ahead of myself.....................now that I have time for "me", I haven't got much time left................so at this point, I really don't give a "shit".........................I could not get more depressed, if someone took a sledge hammer, and beat me over the head, till I was even with the ground...................................now how is that for whining.............and the worst thing........................not one f/n person out there understands, and all they keep saying is..............well at least your alive..........................really, really, well how does.......existing grab your sorry ass.............that is what we do, exist.................I say...........if you think "my life" is so great just being alive...................trade places..................hmmmmmm, thought that would change your mind.............
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The lady I spoke of had already been to the LT so that was good. No pre-surgery measurements had been done as usual since her surgery had occurred exceedlingly quick.
I'm already wearing an abdominal binder from the surgery, so to wear a breast binder would be hard now. That, and the swollen area is very tender, enough that it would hurt from it. At least it's not warm or red.
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Thanks Binney I needed that picture ROFL..
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Paty, Welcome. Binney is indeed a very treasured, knowledgeable resource, and she has taught more than a few docs and nurses a few things about LE. I have no knowledge to comment on the chance of MLD across the body sending the cancer that way, so perhaps Binney or Kira will offer some insight on that possibility. It's a very fair question, and I'll bet others, like me, will be interested in the answer.
I just wish you the best and especially that you have some great resources on your medical team, who can make sure that your LE treatment is working at optimal effectiveness as you continue your BC treatments. Please keep us posted.
Carol
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Binney, your sketch is adorable and so on target as to how I end up explaining LE to folks
left arm is feeling weak so trying to do very light weights as in 2 pounders, tried to explain to a trainer my problem, smart woman but totally clueless so thinking working on my own is better than using an untrained trainer. Need to find a good one who gets it
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Teka, what does MO testing mean? I noticed enlarged lymph nodes in my neck when my cancer came back, along with swelling and pain in my arm. They did a CAT/PET and MRI's to see what was going on and they found new node involvement. I really think these types of tests are necessary to see what is going on and that the mammograms don't show much, especially with women with dense breast tissue.
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Paty, No one answered your questions, that I could see. Let me try:
1) There has never been a study that shows that MLD can spread cancer. The therapists are taught that active cancer is a relative contraindication to MLD, BUT, as cancer can cause LE to flare, by getting into the nodes, and more and more therapists are working on stage IV women, they just have never shown that MLD can spread cancer. I strongly believe that nothing you did to reduce the swelling in your left arm and hand caused cancer to move into your right nodes. Please don't ever blame yourself.
2) Hand swelling: I have it, and it's tough, because hands aren't a simple cylinder like an arm, and the body has to work harder to drain a hand under normal conditions. There is an MLD sequence for hands, and personally, I wear custom gloves and I do wrap my hand and arm every night.
Here is a general arm sequence, but in this one, they are using the axillary nodes on that side, so you wouldn't--now it should all go to the groin--and don't forget the abdominal work, it really clears things out:
" mce_src="" alt="" border="" hspace="" vspace="" width="" height="" align="" /> Here is a sequence for the palm:
" mce_src="" alt="" border="" hspace="" vspace="" width="" height="" align="" />
And here is how to clear the deep abdominal area, which is very helpful--you use the whole palm of your hand--or hands, and always move toward the belly button--push it toward the belly button and then release, in kind of a scooping move and repeat 5 times in each place, and you can also do a deep breath and hold your hand in each of the positions and gently resist the breath at full inhalation, then exhale:
" mce_src="" alt="" border="" hspace="" vspace="" width="" height="" align="" /> And finally, as part of a full wrap, a gauze wrap of the hand is helpful--either with the full wrap or alone
" mce_src="" alt="" border="" hspace="" vspace="" width="" height="" align="" /> 0 -
Carol57, thank you for your kind words. In addition to having good dr's, I see that these posts are a great source of information! I have been so busy trying to get control of my metastatic cancer treatment and haven't been for lymphedema treatment since April. With all the tests, treatment and dr visits there seems to be no time for the physical therapy and lympedema treatment i need.
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Kira, do you have to wear your custom glove 24/7? My therapis told me to get a compression glove and it seems like it pushes the fluid up to the middle of the back of my hand instead of keeping it out of my hand.
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