My experience with Inflammatory Breast Cancer by Wendy Oyler
I was diagnosed with IBC at age 50 in 1998. I had been visiting a friend with many antiques, including old mirrors. I noticed I had a red circle area on my right breast I had not had before. It was hard to see since there were no mirrors in the house that were lower in height with a clear reflection.
I went home and upon arriving home found that my mother in the nursing home (she had a debilitating stroke) had some sort of flu. She was very sick and afraid so I stayed overnight with her a night or two. Then I came down with the flu so curled up on the couch to rest. I noticed my right breast was very itchy and had swollen to about 1 and ½ times its normal size.
I called my girlfriend who was an OR nurse (I am a nurse myself). She was working in the OR at Pennsylvania Hospital (a University of Pennsylvania affiliate). She called a surgeon friend and he told me to call him and I did. He suggested if I was upset he could meet me in an ER then (a Sunday) or come in Monday and he would see me at his office.
I went to see him the next day and he told me he was very sure I had inflammatory breast cancer but would need biopsy. The surgeon had 2 medical students come into the room to view my breast. He told them that they may never see it again in their future practices. He also felt a large lump in my right breast in a different area. He set up the biopsy right away. Side note: I had very lumpy breasts and no pain and several OB/Gyns had checked by breasts and said they were fine on previous exams.
I got the results of my biopsy on Valentine’s Day of 1998. I had a 2cm intraductal breast cancer with 25% of my breast involved. I also had inflammatory breast cancer and was labeled as a 3C for inflammatory breast cancer on diagnosis. My surgeon referred me to a medical oncologist right away. The medical oncologist examined me and I asked my husband and daughter (a family practice resident at that time) to listen carefully to what he had to say. I remembered very little of what he said.The chemotherapy would start that week. I started with 3 week cycles of CAF (Cytoxin, Adriamycin and 5FU). I had CT scans to check for any other cancer progression in my body, luckily there were none.
My brother or daughter brought me to my chemotherapy sessions. I had my chemotherapy infusions in his old office in a large row home across from the hospital. My infusion nurse was great and always found a vein. (This was before ports were coming into vogue).
I went for a second opinion also at Penn. They had just finished a study where they found Stem Cell Transplants were no better than the high dose chemo I was getting. I was afraid of stem cell transplants. Two of my church friends had them at Penn. I talked to my oncologist about my fear of them and he told me the high dose therapy I was having had much higher mortality than the stem cell treatment.
At that time a Penn oncologist had started a radical treatment for inflammatory breast cancer. Chemo first, then the mastectomy and then radiation. Before that change in treatment, 98-99 patients out of 100 died with the mastectomy first, and then the chemo. I don’t think other hospitals in Philadelphia, even a cancer center there, had accepted the Penn treatment rationale, but I had faith in Penn and my oncology team.
I opted for a modified radical mastectomy with sentinel node biopsy after the 6th chemo cycle, hoping it would give the medicine more time to work. My friend, who had referred me to my surgeon at Penn, was given my pathology reports to read to me after surgery. “No cancer was found in my breast.” I was surprised and so very happy. After my surgery, I had 3 more cycles of chemo. In December 1999 I started radiation therapy. I asked my surgeon if I could go to any local hospital for radiation therapy and he said no. He told me I either had to come to Penn or go to a radiation oncologist he knew, not just any radiation oncologist. I went for radiation at a closer medical center. It was much easier than chemo, but after chemo and having radiation, I was very tired.
I found the Inflammatory Breast Cancer site in 1999. I was on their email list and still remember many. Ginny Mason is one who was on it with me. I remember Laney from England, another woman who went to Rochester NY for a new treatment on brain mets. Although those two are no longer with us, I will never forget their energy and determination to fight on.
I went to work for a friend who was working for an Independent Review Organization to fill in for the holidays as a nurse case manager. We reviewed treatment that was denied by insurers, and found a peer physician to review the records and make a determination as to the treatment involved. The first time I had a case for inflammatory breast cancer. I started to shake, and almost cried. I prayed for that woman. That was 20 years ago. I am now 72 and work part time mostly recruiting physicians. I still have connections with many oncologists, heart transplantation surgeons and many others.
I have the joy of a wonderful husband and 50 years of marriage,a wonderful daughter, son in law, and two beautiful granddaughters. They all give me joy every day and have supported me in every way. Every day I give thanks that I am alive to be with them. I enjoying quilting which is good therapy for the mind. Quilts are a good gift for anyone who has been or is in treatment.I follow the Inflammatory Breast Cancer Research Foundation’s Facebook page. Every day is a gift. Live it to your fullest.