Inflammatory Breast Cancer
in West Yellowstone, Montana
By Bärbel Stanley
May of 1999, I had a mammogram, and six weeks later my right breast seemed swollen, felt hot, and looked bruised. I also found a lump in my right armpit. I went to see my doctor, and two days later I had a biopsy. The surgeon confirmed to my husband that I had breast cancer before I came out of the anesthesia.
July 12, 1999, I was 52 years old when the surgeon used the words: Inflammatory Breast Cancer. He said he had seen IBC in "two women in 20 years. The first woman waited too long to be seen and died the next day; you are the second woman." Talk about being shocked and scared!
It would be a 20 day wait to see the only oncologist in our small town. My thought was, "If I have a rapidly growing cancer, and I'm dying, I don't have 20 days to wait." I called a doctor in Salt Lake City and when I told him I had IBC, he asked if we could be in his office the next morning.
Off my husband and I went! He had all the tests lined up: EKG, CAT scan, chest x-ray, and bone scan. I started my first chemo the next day, and I had four sets every 21 days of Cytoxan and Adriamycin. After my chemo regimen, I had a modified radical mastectomy, MRM. I recuperated for a month and returned to work while having radiation five days a week for 28 days and Taxol for six consecutive Fridays. I finished all this Christmas Eve, 1999 -- what a wonderful present to have that much done with!
January 2000 started with more chemo; six chemos every 21 days with Taxotere and Neupogen. My oncologist told me IBC had a high rate of recurrence and to be alert for symptoms. I had Tamoxifen two times a day for five years. During the Taxotere, I experienced burning hands and feet. My fingernails and toenails started detaching but never fell off. I used Mycelex tabs for mouth sores and thrush. I used a Zofran during chemo for nausea. I had a hospital stay in February 2000, for Neutropenic fever. During chemo, I ate anything that sounded good or would stay down given the distorted taste, sore esophagus, and upset stomach. My joints are getting less sore now, but I do have lymphedema in my right arm, and I use a lympho press machine every day as well as a compression sleeve and gauntlet.
I am still taking the Tamoxifen, Megesol for hot flashes, and Syntroid for my thyroid, which was affected by all the chemo and radiation. As for life after cancer -- I would like to recommend "Dancing in Limbo." It is a wonderful book that tells it like it is!
Since being diagnosed in 1999, my husband, Don, and I have become activists in the war against cancer. We participate in "Relay for Life" walks, we have spoken at our local hospital (88 miles away) on annual Cancer Survivor Day, and I participated in an IBC study being done in Washington, DC in an effort to find the cause of inflammatory breast cancer.
To return the support and concern that was given to me throughout my own cancer ordeal, we started the West Yellowstone Cancer Support Group which has 11 different cancers represented. We meet once a month to support all newly diagnosed people by pairing them with someone with the same type of cancer. We supply meals, books and transportation to treatments if needed, since we are in a very isolated community.
My oncologist and my radiation-oncologist each check me out two times a year, which means I am seen every three months, which helps to put our minds at ease. In August of 2004, on the way to Salt Lake City for my IBC check-up, I had a seizure and couldn't control my upper body. I had an MRI, and a slow growing benign tumor called a meningioma was found in the lining of the brain. My oncologist said it is operable if it becomes a problem, but currently with anti-seizure meds, I am doing fine, and it is great to be alive!!
Story Submitted 2005