I am a Union Educator working for an SEIU local in Eugene, OR, a city of about 120,000. DX with ibc in Dec. 96. Symptom was swollen left armpit and edema in breast. Went ahead with adriamycin and cytoxan to "shrink the cancer" before surgery. 3 courses later & that chemo didn't work. Got a 2nd opinion from onc doc in Seattle, WA. She suggested Taxotere. 3 courses later and that chemo didn't work. Seattle onc doc suggested radiation and navelbine in combo (chemo to sensitize the breast). Finished chemo & radiation to left breast and armpit by June 97. Very bad radiation burn and rad onc gave little or nothing for pain and suffering; till I discovered duoderm, I was extremely uncomfortable. Was NED until Sept. 97.
I visited Laura Esserman, breast surgeon in San Francisco to do the clinical trial with the new breast MRI. We discovered skin mets (not yet visible) and a lump in my right armpit. Also visited 4 breast surgeons; 1 in Eugene, 1 in Portland, 1 in Seattle and 1 in San Francisco. The consensus was NOT to have a mastectomy. They said it wouldn't affect my survival time. "Couldn't get clean margins; we'd have to do a skin graft; your skin wouldn't heal, etc." Only the Portland surgeon wanted to cut. He saw NO problems, "I could resect you!" I said no thanks. Saw onc docs in Portland and San Francisco who wanted me to do HDC/SCR. Doc in Seattle thought it wouldn't be a good idea due to my chemo resistance. Decided my quality of life was more important and I didn't like the idea of compromising my immune system. Decided to find new onc doc. Found one in Portland. Told her I wanted to get on Herceptin. Just happened that the nearest Herceptin trial was in Seattle with my"old" 2nd opinion onc doc, Erin Ellis. So after getting in the lottery on the FIRST try (April 1998), I began Herceptin (only) infusions weekly in Seattle. Erin Ellis said I was the poster child for Herceptin only, I responded so well. From April 98 to August 98, I drove to Seattle once a week (5 hours up and 5 hours back). I sometimes took advantage of "Angel Flight, a group of private pilots who transport cancer patients, but after a hair raising flight from Seattle to Eugene in which I held the pilots dog in my lap; my husband lent his swiss army knife to the pilot to start the plane and we smelled burning electrical wires the whole trip, I never took a small plane again.
In August, we got rear-ended and my car totalled and I began taking the train weekly, until October, when I began getting my Herceptin infusion in Portland which is only 2 hours away (after the FDA approved). I took Herceptin until March 99, when I noticed it had lost its effectiveness (my skin mets began growing and the lump in my right armpit grew), so I discontinued it. I then begain doing radiation for my right breast and did a CAT scan in preparation for radiation and discovered a bone met on my rib in the back. So that was radiated, too. I finish radiation in June 99. My next plan is to try to get into a clinical trial that deals with genetic therapy. I don't want to do any more chemo. It made me gain weight and feel bad, whereas I had no side effects with Herceptin. I don't believe in chemo, but I do believe in the genetic therapies.
I attended Project LEAD, sponsored by the National Breast Cancer Coalition and I attended their national conference this year, too. In Eugene, a group of breast cancer survivors have begun a group called Women's Cancer Hopeline and Resource Center. We will be fielding calls from women who have questions they can't get answered elsewhere & providing support to women with cancer by women who are also survivors. I think we all need to follow our own path; I also think that with inflammatory breast cancer, generally speaking, doctors know less than we do, so we need to take control of our health care decisions.
Thu, 10 Jun 1999