May have breast lymphedema and questions!

[mbsoxr]

I will try to make this long story short & to the point, but please forgive me if I get wordy! I was dx with DCIS rt upper outer quad rt breast in March 2003 and treated with lumpectomy, SNB, rads, & tamoxifen... April 2005 biopsy showed ADH same area, another lump, tamox changed to Femara... In June, that breast became red and swollen, and I felt some discomfort at times... Follow up on med change with onc on July 5th - he said it was cellulitis & prescribed 15 days of Keflex... At 2 wk appt no change, sent to my surgeon for ultrasound... Not done, but Cipro Rx for 5 days... Follow up no change, but surgeon finally mentioned possible LE, but wanted to try 2 wks of Levaquin & follow up in 1 wk... In the meantime, both my dermatologist & PCP had mentioned LE, so I was somewhat relieved when surg finally said the word... I return on Tuesday, with no change, new slight occasional discharge from nipple... Now what do I do? Early on I worried about inflammatory bc, but have eased my mind somewhat, but now with all the antibiotics and no change, I am at a loss - do I insist on an ultrasound? Do I insist on referral to an LE therapist? I am so confused, and so tired of dealing with this breast! I had asked my surg to do a bilat mast in April (my breasts are very large) but he said that was not warranted - now I wish he had done it so I can get on with life... I am at wits end, and whining, I know, but what can I do next?
Thanks for any input!

[Deber]

Mary,
I'm sorry that you are hurting and I sympathize with your pain. I had the same experience after each of my many lumpectomy surgeries. I wanted to let you know that mastectomy surgery may leave you with equal or worse LE.

If I could turn back the clock I would have had a bi-lateral mastectomy 10 years ago and bypassed all of the misery from the multiple surgeries to remove masses in my breasts and chest. They chipped away at the left breast until I asked for a mastectomy and then did the same with the right. My mastectomy surgeries were done several years apart. Right side was 8 months ago. I have had other surgeries on my chest since then.

I have LE in my back, chest and minimally in my arms. Worse on the right side, especially my chest. I can actually feel the fluid slosh when I move. I developed a neuroma on the right mastectomy incision site so I can't wear a compression garmet. Pushing, pulling, lifting and typing makes the LE worse. Lymph massage helps immensely but my insurance only covered a few visits. I try to self-treat but some places are impossible for me to reach.

I wish you the best of luck and hope that you find a way to minimize your pain.

Deborah