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Topic: New Breast LE Thread!

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Jul 8, 2011 08:26PM

cookiegal wrote:

Hi!

Please stop and say hi if you are dealing with breast LE.

Let us know what products you use, and what has not been effective.

My arm has been doing well with sleeves, therapy, MLD, and weight loss, but my breast seems to be slowly getting worse.

Compression bras and the silverwave fabric do shrink it to some degree, but I am slowly getting progressively more uncomfortable and lopsided. 

I can actually get away with not wearing a sleeve at night, and my arm usually shrinks, but when I wake up me breast is even bigger if I don't compress. 

Thanks for your posts! 

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Posts 1 - 28 (28 total)

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Jul 9, 2011 07:30PM Outfield wrote:

Hi Cookiegal, I don't have breasts anymore which seems to me like it must make it MUCH simpler, but the kinesiotape does seem to help my chest LE.  I do some compression at night sometimes with a tube-top like thing I got from a place called Expand-a-band, but the compression is difficult for me because it aggravates the pain I have.

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Jul 10, 2011 11:15AM sushanna1 wrote:

Mine comes and goes and is confined to the outside of the breast near the armpit.  Frequent p.t. is about the only thing that consistently helps.  The manual lymphatic drainage that I do for my hand seems to help too.  Kinesiotape also helps but is a tremendous amount of work.  

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Jul 10, 2011 11:41AM Binney4 wrote:

Cookie, no breasts here, but I have similar problems with chest LE. Best help for me is Lebed exercises. I wish I just did them every day, but I'm not that consistent. When it bugs me, though, I get right back at it and it helps enormously, and right away.

I've tried the Bellisse and didn't like the fit, though some women find it helpful.

Best help for me during the day is either the bra or the Slimmer from WearEase. I wear the Slimmer inside out as it's easier to access the prosthesis pocket, and it cuts down on "bridging" from the height of the prosthesis, but they're so well made you can wear them comfortably either way.

For night, the Expand-a-band chest wrap works, but I'm more comfortable in a Solaris vest -- gentle compression, wide shoulders so it covers the area behind the axilla too, but you can have it designed any way you want. It's hot, so I stow it in the fridge during the day and put it on cool.

Not having breasts anymore, I can also use a between-the-ribs finger massage my therapist taught me that stimulates the deeper lymphatics, and that helps too. When I'm having trouble I also resort to clearing neck nodes and chest (MLD) several times throughout the day.

Like you, my arm swelling seems to be related to the truncal swelling. If the top of the sleeve is too tight it causes a chest flare (and pain -- yuckTongue out). I don't know why that is. It doesn't make sense to me as far as how the lymph system operates, but nothing about LE makes much sense.

Can't use kinesio tape because of severe skin sensitivity in the chest area to adhesives.

I use either "chocolate bar" hard foam pieces or a kimbe swell spot to control flares, depending on how aggressive I need to be.

Weather affects this for me. Barometric pressure, heat, and humidity all complicate my life. Also overuse of my arm.

Be well!
Binney

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Jul 10, 2011 07:56PM cookiegal wrote:

Thanks for the good advice. I already got measured for the Belisse.. though one of my LE's says she has not seen great results.

The silverwave fabric does make a difference. It's just that where it used to get me down to a match....now I am always lopsided.

It did not help that my surgeon made me bigger on the cancer side thinking I would shrink from rads.

I sometimes wear a post surgical compression bra from contemporary design inc.

Sports bras actually work ok, but they make my neck hurt.

I will have to look into solaris vest. I am DD-DDD so a lot of traditional compression bras are not a good shape for me.

I also wear my home-made bra, that I converted from the silver wave belly band.

Tonight I went to Kohl's which seems to have a relatively innovative lingerie selection.

I had a lot of stretchy tanks from post surgery, but I found some tonight that do not have a belly band....so maybe they will help....but I still probably need a bra at night.

Ironially....the underwire + Silverwave combo seems to help if it's just for 3-4 hours.

I can only suspect that the elastic on the non underwires is blocking lymph flow down more than the underwire.

I will check out the vests and wraps!

I really hope that they make a silverwave tank or bra. If I were good at sewing I would do it myself.

Cheers! 

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Jul 11, 2011 08:45AM cookiegal wrote:

so I had some decent results with a new shelfbra top...it does not have a t back...and it cut a bit more shortwaisted....it is a Danskin bought at Kohls...it does have a lot of pink and white flowers on it though...but I looked more symmetrical when I woke up. I wore it with the silverwave.

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Jul 11, 2011 03:13PM sisterinspirit wrote:

Cookiegal,

Count me in as someone dealing with breast LE.  Lots of good suggestions here.  Would like to add a couple more.  I migrate between a sports bra and a slimmer by WearEase.  I can tolerate the sports bra sometimes, but at other times I think it is part of the problem.  I recently got the criss-cross shaper by Wear Ease and like it too.  Last week my truncal LE was really bothering me because of the heat and a couple of missed MLD sessions, so went in to be treated by my Chikley trained LMT and noticed a BIG difference.  Much more comfortable now, thank goodness!

Deb

live well Dx 4/9/2008, IDC, 1cm, Stage IB, Grade 1, ER+/PR+, HER2-
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Jul 11, 2011 04:04PM cookiegal wrote:

It's so hard to understand which bras help and which hurt.

I have one genuine compression bra, but it has a really wide elastic band...so it may make things worse.

I quite like sears leisure bras...they are clothing friendly and don't bind, but for some reason they make me worse.

Yet I can get away with underwire sometimes.

So far so good with the danskin....but again it is a shelf top bra with a lot of pink flowers.

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Jul 14, 2011 08:48PM cookiegal wrote:

Operation Boobiesqueeze continues. I tried the "Barely There" tanks from Kohl's today....2 of them with a SB underneath plus "boobie wiggles"....it did ok...but not as well as I hoped. I still think they might be good for someone who needs light compression....they look pretty good...I even wore them around the office.

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Jul 17, 2011 04:56PM cookiegal wrote:

so mld helped yesterday...but today I flared right back up...argh...I wore the undewire more than usual...w/ the fabric...not sure if that was part of the problem or not....it was hot and we did a lot of errands.....

at least my arm shrinks at night!

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Jul 17, 2011 05:16PM cookiegal wrote:

Has anyone ever K taped a breast?

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Jul 18, 2011 04:20PM cookiegal wrote:

well I went for it an Ktaped my anchor scar under the breast, since we think that's a big part of the reason it is not draining well. Not really following the lymph pattern yet...just looking to mobilize scar.

I even put a bit on my cancer scar which has gotten fibrotic.

I think maybe it's helping a little.

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Jul 18, 2011 07:10PM BeckySharp wrote:

Cookie--I sent you a PM earlier.

Becky Dx 1/20/2011, DCIS, 2cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Jul 18, 2011 07:31PM marymoir wrote:

Sign me up for the breast/truncal LE train.  My 1st LE therapist fitted me with a Belisse, but she was not a certified fitter, and it never fit very well and in fact made things worse.   2nd therapist managed to make things better, but my bi-annual mammo a few weeks ago put me back at square 1, and it seems to be harder this time to get on top of it (I'm sure the nasty heat/humidity isn't helping). 

 I started a similar thread a while back that got some really helpful responses -- I don';t know if there is any way to link to it or not, but I think it was around Nov./Dec. 2010.  But still looking for a bra or tank that works.

Mets to liver and multiple bones. Dx 11/19/2008, IDC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 12/8/2008 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 1/6/2009 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/25/2009 Breast Hormonal Therapy 6/4/2009 Dx 11/3/2012, IDC, Stage IV, Grade 3, mets Chemotherapy 11/15/2012 Doxil (doxorubicin) Hormonal Therapy 3/12/2013 Faslodex (fulvestrant) Chemotherapy 9/7/2013 Xeloda (capecitabine)
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Jul 20, 2011 08:49PM cookiegal wrote:

Hi Marymoir.

I still think the K tape did a little good...for sure my scar looked less raised when I took it off. Hopefully less scar...more flow. 

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Jul 25, 2011 07:28PM char123 wrote:

Hello:  I have Breast LE , very painful and swollen. Have gone to a therapist, no one certified in my area.  Any suggestions and exercises would help. Things seemed to get worse when It first started in my hand,went to the therapist, did the arm massages and bam, my breast blew up. Not going back to see her again.    This heat wave has not helped. So any, I mean any suggestions, I would love to here.

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Jul 25, 2011 08:57PM cookiegal wrote:

Hi hoist!

OK my most helpful bra has been....drumroll....the danskin shelf bra sports top from Kohls. I wore it all night and most of today and my breast looked normal for the first time in MONTHS!

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Jul 26, 2011 07:09PM char123 wrote:

Oh my, I gotta go to Kohls,  Thanks...

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Sep 2, 2013 09:33AM - edited Oct 15, 2013 10:32AM by Moderators

wow, no action here in a long time. i wasnt really sure i had breast lymphedema, but now i am sure of it. my boyfrend and i work, or at least i used to work, in construction. i have begged him to design for me, a breast clamp! compression feels so good, my le in breast is not so painful, but is insanley itching, somehow on the inside. anyone else experience this. i was always wondering why my lumpectomy breast did not seem smaller than my good girl. girl who did my last mammo, said, its just edema. wtf. what is that edema? Air? Water? protein rich fluid? in which case, we can call it by its real name, lymphedema!!!! any way, we have so many different kinds of clamps and vises, im gonna go put my boob in the table vise. just kidding. when i was getting treated for arm le, my lana certified therapist did not adress my breast at all. how did i know that it should have been. education on so many matters concerning living with the aftermath of breast cancer should somehow be adressed alot sooner, before things reall become problematical. the compression of the last mammo kind of felt painful, but good, but boy did my nipple and aureol pop! Out! it took days to get it to calm down. what i did was mld, like normal, w/ special attention to kind of squeezing here and there on breast. then, i put on the velcro tube top and tucked in homemade swellspots stategically, then wrapped around my whole torso with two or three short strectch bandages. relief was profound. problem is, it reinflates quickly aftr removing all this mummy wrap. gggrrrrfkngrt. i am taking tamoxifen, could not handle arimidex at. ALL. did for 6 mos, and i do believe the tamox is making ALL my areas of LE much worse. anyway if i can design a better boob clamp, i will let ya know.....

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Sep 2, 2013 11:26AM Binney4 wrote:

Kathec, I'm so sorry for your experienceFrown, but I'll admit I laughed clear through your postEmbarassed! I think there's gonna be a line waiting for that clamp you're designing, so get on itLaughing!

Sigh! I too have to use compression 24/7 on the chest, though my arms get a compression break every evening for a few hoursTongue Out. Hope you're feeling much better and finding a compression cami or bra (or sports shirt) that'll work for you without all the ingenious wrapping. Keep us posted!

Gentle hugs,
Binney

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Sep 2, 2013 01:47PM - edited Oct 15, 2013 10:32AM by Moderators

Thanks, Binney! for all the work you do here answering ladies questions and basically being the LE font of knowledge. and glad i could make ya laugh, too! in my mind, i am actually seriously thinking of just exactly how i could do that. have time on my hands, and i am pretty much obsessed with Le anyway. Have a studio full of art materials, and leftover construction materials. I am getting ready to fly to sacramento, a short one hour flight, and just realized, i had better get a compression bra ordered with a quickness, as i dont want my amazing expanda-boob to take over the whole cabin of the plane. could you imagine? the stewardess pressed up against the panes? impressions of peaanuts?emergency nipple release door?sloshing turbulence? wonder if that boob in the woody allen movie was an le boob....prolly. i was just getting used to the idea of arm le, and now, my cup overfloweth.  ;(

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Sep 2, 2013 08:15PM - edited Sep 2, 2013 08:29PM by SweetCaroline2

Kathec-  thank you for making me laugh about LE!! I didn't think that it was something that I would ever be able to laugh about! It seems that the whole medical establishment regards LE as a nonproblem. I was in treatment for arm LE and mentioned to my Lana certified LE therapist that I was sure that I had breast LE as well. She hadn't noticed or asked me about LE anywhere else. (In fact, NO ONE had asked me about any symptoms of LE, EVER- not my Breast surgeon, my PS, my PCP or my oncologist) My breast LE is actually much worse than my arm LE. The compression bra really helps reduce the edema and my breast aches if I do not wear it. However, it  is hot, uncomfortable and it is hard to find clothes in which is does not show.  I looked on the AstraZeneca (makers of Arimidex) website for Arimidex. They list LE as one of the SEs of Arimidex, so I am asking my onc to switch me to another AI that does not have this SE (if there is such a thing). 

Cookiegal-thanks for the tip about the Danskin shelf bra- I have been looking for something that I wear at night that would help.

Dx 3/2/2012, ILC, 6cm+, Stage IIIA, Grade 2, 3/18 nodes, ER+/PR+, HER2- Chemotherapy 3/22/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 9/11/2012 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Latissimus dorsi flap Radiation Therapy 12/19/2012 Breast Hormonal Therapy 2/1/2013 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 2, 2013 08:32PM - edited Oct 15, 2013 10:32AM by Moderators

Hi SweetCaroline2. I do believe i did read somewhere that ALL the hormonals can cause a worsening of lymphema, altho they just kinda say "may cause swelling in hands and feet" too. i had to stop arimidex cause i was in ferocious pain!! so far so good one month tamoxifen, but pretty sure it is worsening LE  for me. i wonder if anybody else knows? i was also wondering if there were any women who noticed improvements after finishing the  big 5 years....  It does get better, or maybe we just do get a little more relaxed with time about it, and i am noticing the more i just treat my arm just like the other one, make it do its job!, then the better it does seem to slooooowly get. 

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Sep 3, 2013 02:52PM SweetCaroline2 wrote:

Hi Kathec- Thank you for telling me about the pain that you were having while on Arimidex. I have been feeling like a whiny baby because I have had such terrible muscle/joint pain and exhaustion since starting Arimidex that I can't seem to get much of anything done. However,my MO says I must continue to take it. I know this is because my tumor did not respond to neoadjuvant chemo, and many ILC tumors have a better response to AIs than chemo. I would like to try Tamoxifen instead, though. Please let me know how you do with the change to Tamoxifen. You can send me a message. 

Dx 3/2/2012, ILC, 6cm+, Stage IIIA, Grade 2, 3/18 nodes, ER+/PR+, HER2- Chemotherapy 3/22/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 9/11/2012 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Latissimus dorsi flap Radiation Therapy 12/19/2012 Breast Hormonal Therapy 2/1/2013 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 3, 2013 08:40PM cookiegal wrote:

The hormonals can make LE worse???????

ARRRGH!

(on the on other hand a lot of drugs do have that as a possible SE)

I wanna curse

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Sep 11, 2013 03:25PM - edited Sep 11, 2013 03:27PM by SheilaB330

Miserable. Am on 2nd course of antibiotics for my BC boob having rd incision, redness which I have found is called erythema and fullness and low fever around 100.8 - oncologist nurse practitioner thought edem from arm, back to surgeon who drew around the red wrm ara, put me on a 2nd course of Keflavik nd wants to se me next week-- will draw out fluid to check if there is n infection not responding to 2nd course of antibiotics.

A colleague who had BC and also has arm, breast and truncal lymphadema said she was on antibioics for 3 months before they diagnosed her properly. I have a great lymphadema PT but she has been concentrating on my arm "to prevent lymphadema" and the painful cording I have. Bummed. Why do I need to do medical research? I think based on 35 minutes of Internet searching that I have concluded I have breast Lymphadma. Seems like everyone talks round calling it lymphadema - edema, seroma but if it is lymph fluid - it's lymphadema. If I lay on my side, my poor boob picks up wrinkles from the sheets. I don't want any needles poked into my feverish boob!

Dx 5/14/2013, IDC, Grade 1, ER+/PR-, HER2- Surgery 6/12/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Dx 6/18/2013, IDC, 1cm, Stage IIIA, Grade 2, 5/11 nodes, ER+/PR-, HER2- Chemotherapy 7/18/2013 AC Chemotherapy 9/12/2013 Taxol (paclitaxel) Radiation Therapy 11/13/2013 Breast, Lymph nodes
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Sep 12, 2013 07:38PM bhd1 wrote:

Outfield who taught you how yo tape. When do you do it? Day night or both:? To bed.?

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Sep 12, 2013 08:14PM bhd1 wrote:

Cookie thanks for starting
This thread. I am new to le. And just starting to look for le products. I have had breast le for over a year and never knew it until my arm swelled in August. It is such high maintenance. I really appreciate the help you ladies are sending my way. Thank you all

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Sep 13, 2013 10:24AM Binney4 wrote:

barb, here's information on Kinesio taping for lymphedema. You'll need a Kinesio-trained therapist to help you determine if this is something workable for you, and apply it for you. Hope this helps:

http://www.stepup-speakout.org/kinsiotaping_for_lymphedema.htm

Hugs!
Binney

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