Lumpectomy Site - Still a problem - A year later

 You are in constant great pain and that does not seem normal.  It might help for you to talk to your original surgeon.  The surgeon may be able to reduce the scarring and that may help with the pain. 

Best wishes. 

Hi, Kay,

I sure hear you on this. Breast or chest lymphedema is VERY painful - just about drove me nuts.  And no over-the-counter pain meds even touched it. And it's true that a mastectomy would be unlikely to change it because the problem comes from damaged lymph vessels and missing nodes, and no surgery will fix that. I finally found an experienced lymphedema therapist who knew how to treat breast/chest lymphedema. Once the swelling was reduced and I was able to keep it that way, the pain subsided. Now I can tell when it starts to swell because the pain returns, so I do keep it in good control.

Two things are important with lymphedema: lymphatic massage (called Manual Lymph Drainage, or MLD), and compression.

The MLD should be done by a well-trained and experienced lymphedema therapist, and she should also teach you to do it on yourself. The amount of pressure, the hand positions, and the order of the massage strokes are all important, so it's not something you can learn on your own. Once you know how to do it and the swelling is reduced, you'll want to do it daily to keep control. Good news: it's gentle, and it can give you time each day to relax and take care of yourself.

Compression doesn't come from bandages like it does with arm lymphedema, but from special bras or camis. There are lots of options, from bras specially designed for lymphedema to regular bras, sports bras, camis and body-shapers that provide the kind of compression you need in the places you need it. Another help, if there are specific areas of fibrosis or extra swelling, is a specially made pad called a "swell-spot" that adds extra compression and encourages lymph flow out of the area. They come in a variety of shapes and sizes to help with whatever odd-shaped area needs compressing, and your therapist can help you find one if you need it. There are loads of ideas for breast compression on the "Step Up-Speak Out" website here: http://www.stepup-speakout.org

From the menu on the top of the home page, click on "lymphedema garments" and scroll down to the bottom of that page for bras, camis, binders, and body-shapers. Also from the home page menu, do check out the page about finding a qualified therapist in your area, unless you're satisfied that the therapist you saw can help you get the treatment you need.

One other treatment method that some women find helpful for breast and back lymphedema is Kinesio taping, also done by a well-trained lymphedema therapist:
http://www.stepup-speakout.org/kinsiotaping_for_lymphedema.htm

In the meantime, sometimes a tight sports shirt (like BodyArmor, y'know?) or tight leotard can help contain the swelling (it won't reduce it, just keep it from getting worse - you need the MLD massage to reduce it).  Buy it in a size smaller than you'd normally wear and turn it inside out so the seams don't irritate your skin. Stay well hydrated (that will help dilute the lymph fluid) and take a few deep abdominal breaths throughout the day (that stimulates and helps "pump" the lymph throughout your body.

You need and deserve answers and solutions to the pain problem, and I just want to encourage you that there are things that will help. Unfortunately it's not at all uncommon for our doctors to fail to diagnose breast lymphedema, and way too many of them don't know what to do about it anyway. So make sure to follow up with a therapist who's experienced and knowledgeable.

Feel free to come join us "swell" gals over on the "Lymphedema After Surgery" board for information or encouragement. Prayers for real solutions and real relief,
Binney

Floridalady

my doctor told me I had no vascular invasion. Does it mean there is no bad cell in my blood stream?