BREAST LE... HELP PLEASE!

Rockym, breast LE is very, very common--a recent study (2012) indicated it occured in almost 60% of women who had surgery and radiation. It tends to get better, especially with lymphedema therapy. When the sentinel node(s) are gone, the path out of the breast is blocked, and then rads can cause inflammation

there was a bc.org "ask the expert" about it, and here's a link about it:

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

Here's the bc.org link:

http://www.breastcancer.org/treatment/lymphedema/ask_expert/2008_04/question_07.jsp

Amy: Does lymphedema only occur in the arm or can it be in the breast as well?

Answers -Nicole Stout, M.P.T., C.L.T.-L.A.N.A. : Absolutely! Not only can it be in the breast as well, it can be exclusively in the breast and chest wall, even if it does not appear in the arm. So we need to recognize that breast edema and chest wall edema exist and should be treated.

Jennifer Sabol, M.D., F.A.C.S. : As a surgeon, I probably see it more acutely than most and have a more difficult time getting other physicians to acknowledge that there is such an entity as lymphedema of the breast which is actually quite uncomfortable for some patients as well as alarming, because it is difficult to ask for treatment for swollen breasts. I think maybe you can comment on how you manage patients like this.

Nicole Stout, M.P.T., C.L.T.-L.A.N.A. : I would say, first of all, recognition is part of the key. I believe anecdotally that I am seeing more frequency of breast and chest wall swelling - lymphedema, if you will - now with the sentinel node biopsy, as we are removing the direct drainage pathway out of the breast. Unfortunately, it is going far underrecognized. Treatment for breast and chest wall lymphedema is analogous to the way we would treat the arm, meaning that the patients would require lymphatic drainage, compression, therapy, exercise, and skin care. Many of these patients will require custom fit or near-custom compression bras.

Kathryn Schmitz, Ph.D., M.P.H., F.A.C.S.M.: I would say this is an international problem. I was at the Australasian Lymphology Association meeting in Perth in March, and this issue of seeing more breast edema was a theme there. It seems to me that the compression garments and treatments available are not as advanced as they are for arm edema, the compression garments in particular.

Nicole Stout, M.P.T., C.L.T.-L.A.N.A. : I would agree with that to an extent. I think there are excellent compression bras that exist. I agree with you that we are as not highly evolved in this area in recognition, treatment, and management as we are with the arms.

Jennifer Sabol, M.D., F.A.C.S. : I would add one note of hope, and it is sort of anecdotal. I think this is one of the few times that lymphedema does have a tendency to regress. It's probably due to the acute injury of the radiation therapy. Breast edema does tend to go down over time, though it may not disappear. It is a very slow resolution of the edema and it's almost never complete. I generally tell patients to expect a very slow, ongoing improvement, even over 2 to 3 years after their radiation therapy, until they reach a stable plateau. I'd be curious if you two have found the same sort of better overall prognosis for the breast edema.

So, it's common, it's treatable, and if you search this forum, you'll find lots of women with it and ideas for compression and treatment.

The PT may specialize in breast cancer, but are they trained in lymphedema?

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

Hope that helps.

Kira

Rockym, I don't have pure breast LE.  Mine is more truncal -- mostly my left (mx) side and upper arm, as well as my breast.  But I get flares all the time, and they absolutely do subside.  Two of the worst exaccerbators are exactly what you mentioned -- weight lifting if it's a move or a machine that puts too much pressure on my chest area, and also the summer heat.  (I'm near Palm Desert, so very similar to AZ -- like 106+ this week.)  I like to walk in the a.m., but even then at this time of year it's so hot that I get overheated which causes painful flares.  

What helps me the most is always wearing a sports bra with really good compression.  You might also try sleeping in a t-shirt with compression (Under Armour, etc.), to see if that helps.  Also, absolutely no hot baths or hot tubs.  And, self massage also help.  In fact, there are a couple of good "how to" videos on YouTube for that.

So I would say, yes, it probably will subside -- but my guess is that as long as you lift weights and are in the summer desert heat, it will only be temporary until the next time you get overheated or overstress your left chest area.     Deanna 

Rocky, the best thing I did was work with a trainer for a month.  He didn't have specific bc or LE client experience, but he was professional and experienced enough to understand what I explained to him about my surgery and my limitations.  Since then, the only time I've had weight-exaccerbated flares is when I've done exactly what you did and either used a machine or weights or a position that put too much pressure on my chest.  You absolutely can lift weights!  It's really good for us!  You just have to be smart about not over-doing any moves that strain your chest muscles.

I just use regular sports bras -- Nike, Champion, etc.  I wear one every day, and if I'm having a really bad flare, I wear one to bed.  It's made the #1 difference for me.  I look for ones that have a wide side panel with really good compression.  When I find one I really like, I buy it in multiple colors.  On extremely rare occasions (like holiday parties) when I've worn a wire bra for a few hours, without fail, I've had painful swelling the next day.      Deanna

I'm a stage 3C- I had 32 nodes removed-22 pos. I had a lot of radiation- 5 fields we treated every day for 7 wks. Lymphedema was almost in inevitable. I had lymphedema in my arm and trunk. I had regular massage, wore the miserable garments- compression bra, sleeve gauntlet. About two years ago, I noticed it was pretty much gone. I still have to wear compression on airplanes and I have a LE machine at home - I might occasionally use it after strenuous exercise. But, I feel like it's pretty much gone. It's down to a Stage/Grade "0" in my forearm. I mostly swell under the arm- but compared to the first couple of years, it seems like nothing now.



I started with LDM by a PT and she taught me Self LDM which I did for a year between PT visits (I don't think I did it well in the beginning) until I had my reconstruction and then couldn't do it myself. I found a massage therapist/ nurse who was certified in LDM- so I combined LE treatment with a relaxing massage. Did that for about two years.



I know a couple of years seems like a long time, but keep up the LDM - I was very consistent -I was like you-I wanted it to go away. I didn't want to end up with bandages. I think regular exercise and swimming helped too. But moderate weight bearing in the affected side.



I hope it gets better for you!



Good luck





It can get better

Wish I could tell you that it subsided. I will say it does respond pretty well to compression. I have good days and bad days.

The breast seems to get much better and much worse much more quickly than the arm. (Usually a good night of compression can get it down.)

At risk of sounding like a broken record, I used fabric from the soldea abdominal band in my compression bra, and that really helps manage it.

Also jogging seems to help.

Good Luck!

(we are not sure why but my LE MD still believes it is edema not lymphedema, but that seems like a kind of random distinction)