Tear, Tear, Sniff, Sniff

Nipi

Hello. So, after having a mastectomy with DIEP(no nodes removed)

I now have breast lymphedma!! I was fine for 7 months, and then out if nowhere I got I really bad infection, I was put on antibiotics for 2 weeks, then 4 weeks later it was back. I was in the hospital for 2 days on IV antibiotics, and then 2 more weeks of oral antibiotics. No one at the time was able to tell my why I was getting infections. 3 weeks later another infection. I went to see the ID doc, who told me I had lymphedema of the breast. He told me that I need to take a low dose antibiotic for LIFE!! because the infection will come back. Has ANYONE had infection like this that stop after seeing a LT? Or are antibiotics for life my only choice?

cookiegal

Yikes...that has to be frustrating.

I did have cellulitis in my breast, and did end up with breast LE.

I will say this..my breast LE is MUCH more responsive to treatment than my arm LE. But you want to start really trying to take care of your arm.

People with much more experience than I will have hints for you.

You might want to consider a low compression sleeve for exerting activities...though some say not to put a glove on an arm with no LE.

Anyhow there are people for whom the LE just stays in the breast.

Good Luck. There is a truncal LE thread that might be helpful.

Nipi

Thank you Cookiegal.

Binney4

Aw, Nipi, I'm so sorry! But I think there's more hope than you're currently feeling. The point of reducing the swelling through therapy is not cosmetic (though that sure helps!), but to lower your risk of infection. Lymph fluid is warm and protein-rich, so when it sits stagnant in our tissues it's like an incubator for bacteria. A well-trained and experienced lymphedema therapist will be able to get the lymph flowing out of the area, and teach you to keep it that way. After that you can cautiously consider (with your doctor's help) how you can work toward getting off the antibiotics.

On the other hand, those of us with lymphedema do run a life-long risk of infection from even tiny skin cracks. So vigilance (and a prescription of antibiotics to have on hand) will always be needed. But proper self Manual Lymph Drainage massage, excellent skin care, and gentle exercise should help you improve your outcome considerably.

Here's how to find a well-trained therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

And here's some information about truncal (breast/chest) lymphedma:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Keep us posted! We all learn from one another's experiences, and we're sure here to help any way we can.

Gentle hugs,
Binney

Suzybelle

Nipi, so sorry this has happened to you...but like Binney said; as bad as it seems right now, it's doable.

I have had cellulitis as a result of LE twice, the first time was really bad.  I keep a prescription of antibiotics on hand in case I see evidence of infection, or if I cut or burn myself.

 Please talk to your dr. about getting in with a good LE therapist...and let us know how you're doing!!!!!

Suzanne

Nipi

Binny & Suzanne, Thank u both for responding. My PS convinced me to do a small reduction on the breast, as he was SURE it would help. I did it, not knowing any better. I did it last Tuesday, and when I left the hospital that night the breast looked great and felt so light. I thought WOW! He was right! Well, since last Tuesday, the breast is starting to feel a little full, and appears to be a little bigger again:-( only draining 10-15cc a day. Reading your post today made me feel more hopeful about treating it, and not spending the rest of my life on antibiotics. Thanks again for the info!!!

cookiegal

That's interesting. I had a reduction with my lumpectomy, and always wondered if that helped or hurt!