Breast Lymphedema

This link might be helpful to you--with sentinel node biopsy, breast lymphedema has increased--because the node(s) that drain the breast are gone, and add radiation, and it's very, very common.

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

Did you see a good LE therapist? Many are not familiar with breast LE. 

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

Your oncologist and rad onc are correct, it is swelling, but it puts you at risk for infections, can be painful and good, effective treatment can help it improve.

And, from bc.org

http://www.breastcancer.org/tips/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 Gergich, 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 Gergich, 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 Gergich, 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.  

Kira

thanks kira, I found it and willl be reading the resources.

Connie

Me too and I'm 2 months from rads, my breast and underarm are swollen.  I know for sure it started during the 3rd to 4th weeks of rads, although the rad onc denied it and point the finger the other way. Went to a LE therapist, but went too early.  It gave me so much pain that literally stopped going.  

My surgery was July 28th, 2010 and haven't gotten an appointment to see the BS again after rads was completed.  Who will be responsible to order my next mammo?  I don't think I can have a mammo on the dx side as it is so sensitive and sore.  My breast MRI report said that I need a scan every 6 months.  Has anyone skipped mammo and just get MRIs?  Wishful thinking I guess

Connie, nice avatar. That's the same pic as my computer background picture.  We have same taste.

I am supposed to go and get fitted for a sleeve but because of the discomfort I had been stalling.

Nice to hear more tips from others.

Cocojo, hello!

Have you tried day-time compression with a Bellisse or Wear-Ease compression bra or cami? I like the WearEase Slimmer myself. It does help to control the swelling. At night I use a Solaris or Jovi vest that really helps reduce the swelling overnight. Just a thought, since getting the stagnant lymph fluid out of the breast reduces your risk of serious infection.

Be well!
Binney

I was just dx'd with breast lymphedema, too.  My treated breast has been consistently swollen since my lumpectomy/SNB a year ago and radiation 9 months ago.  Luckily, it's relatively mild and does not hurt.  I've just begun seeing an OT who has been trained in breast & truncal lymphedema and manual lymph drainage, so I'm hopeful that those treatments will help.  She suggested I try a compression bra, but I haven't worn a bra of any kind for years (undershirts only), and am not too enthusiastic about the idea.

Does having breast lymphedema increase one's risk of arm lymphedema?  My breast lymphedema is not too much of a problem for me.  But I am so scared of arm lymphedema...

Cocojo, a compression bra won't reduce swelling, it will only contain it. To reduce it you need some hands-on therapy by someone well-trained in treating lymphedema. S/he can also teach you a self-manual lymph drainage massage that you can do yourself to maintain the fluid loss. Then a compression bra fitted for your reduced bra size will help you maintain the reduction.

Raili, there are a lot of compression options besides compression bras (camis, shapewear, breast binders). You might want to check them out at the bottom of this page:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Hope that helps!
Binney

This is probably a really stupid question, to which the answer is "no," but I'll ask it anyway -

For those of us who cannot afford an official compression garment, is there any benefit to wearing just a tight sports bra and/or one a size too small?? 

Hi ladies, wow glad I found this thread. Thanks Binney for suggesting it.

I am two months out from rads and all the focus was put on me watching for arm lymphedema.

After returning from a month in the UK, my breast was sore, swollen, hot and down right painful. Saw my onc who said it was normal. Then saw Rads onc who thinks it is cellulitis. Saw surgeon who said he thinks it is breast lyphedema. 

I am now seeing a lymphedema P/T for the next 3 weeks. She is massaging me, stretching me and giving me techniques to use to help the lymphedema from getting worse. For example, techniques to drain the fluid manually.

I have tried a few compression bra's and non of them are working. Thankfully they were samplew. It just blows my mind how bloody expensive these garments are,made

Raili, this is for you. My P/T made me a foam pad which is pretty firm to wear at night under a sports bra or camisole. For the day time she has me wear a softer pad. The insides of both are of individual foam pieces. Do not get a sports bra smaller, even though it feels tighter it doesn't work any better than a good fitting sports bra.  I asked the same question. You just need pressure on the breast where the swelling is.

The last few days have been hard for me.  After getting through surgery, chemo then rads, I honestly thought the worse was over.  Lymphedema is a constant reminder that I had cancer. I feel like I lost my femininity when I lost my hair, eyebrows and eyelashes. Now dealing with breast problems is a slap in the face.

My bigger frustration are the Dr.s that play everything down.

However, on a better note I'm off for a well deserved massage.

Gentle hugs ladies

Jules

Swanseagirl: I work in radiation oncology, and I can see when women are getting breast LE: their skin tends to thicken while in treatment.

I did just see a woman who I sent for LE therapy a year ago and her breast is SO much better. So, there is hope. Everyone is different.

Kira

I am 2 years out from finishing RADs. I just went to my RAD ONC for my last scheduled appointment. He asked me about LE, and I told him I get it in my breast and the side of my chest. He admitted that this is from losing nodes (sentinel node and 2 others) as well as RADs. 

I don't think it ever gets better. The nodes are gone, the damage is done. BUT I have learned over time what makes it worse and what I can do to make it better. It is very annoying. It makes me personally crazy that I lost three totally healthy nodes and now have to deal with this. I was glad to see recent research that suggest maybe we are moving in a direction where nodes can stay... 

Cookie, what is silverwave tummy band?

My p/t has given me a pad with faom in it to wear as the compression bra's I tried just do not fit.

Thanks

Jules

I have no idea if it will work for anyone else. But all the LE's who have seen the results have been quite surprised. It's like boom, the breast LE is gone!

I tried sewing a bra out of it, but I just put some of the fabric in my bra and it works like a charm.

Lefty goes from being the bigger breast to being the smaller one.

It had not been nearly as effective on my arm. 

Go figure.

Kira & Cookie, thanks for the advise and links.

Thank goodness for the BCO web.  I wouldn't know where to turn if not for all of the wonderful ladies on this site.

Jules

I hoped to never had had to post in the Lymphedema threads...and what I feared in node removal drives me here. I deeply feel for everyone who struggles with lymphedema. I had a injury to my right risk that effects me to this day. It never goes away. I can't imagine adding lymphedema on top of that.

 It's been two plus weeks since surgery and biopsy removal. I didn't consider breast lymphedema. My breast is still swollen and part of it is like a rock. The nurse said it's just scar tissue. I think its sentinal node fluid. I am seeing a PT on Monday.

I am glad I made the decision not to do rads. I hope what I have resolves...right now...I'm scared. I mentioned in another lymphedema thread that I have cording problems. Also the whole left side of my sick breast is burning....the chest area and ribs. Is this all part of it?
Diagnosis: 1/7/2011, IDC, Stage I, Grade 1, ER+/PR+

This is such a great site-I wish I'd found it earlier. I was ok until the night my husband died. He almost rolled out of bed as we were turning him. I wasn't going to let him be on the floor, so everypart of me kept that from happenning. All chest and arm muscles were affected. As a result I had LE symptoms , which have subsidided for the last 7 months. But I have been aware and active in preventing the LE occurence. The things that I did were supported by this site and finally by the LE certified PT  therapist that I was able to be seen by in DEC. Since at first know one believed what I was saying about swelling of the left breast and the armpits bilaterally, I had to self direct my actions. Limited or no use. Specific sleep positioning.  For the worst side, I elevated on several pillows at night , wore a sport bra or the only Wonder bra I own to keep the foobs midline. The discomfort for months was only bearable by trial and error. Because I couldn't get approval to see an approved certified Le person from first complaint in Sept to Dec., I was "lucky" that I had an idea of what to do as a nurse. But I was flying by the seat of my pants. I. E making it up as I went along and hoping it was right. My onc doc was resposive to the problem he couldn't see , and listened to what I said and ordered a LE eval.--Thanks to this site for validating what I knew was happenning---you made my day. Each week by paying attention to symptoms , I changed activity. I would describe my response from day one of injury to improved. I do know that under similar circumstanses that I could have a similar injury--vigilance always---and follow the directions of the LE therapist which limits certain activities.  Well another moment in time that BCO made a difference in my life