In June 2009, while performing a self breast exam, I discovered a lump on my right side. I had very fibrous breast tissue and never imagined I would know if I had a real issue but the lump was different and seemed to increase in size in a matter of weeks.
I went into my OBGYN who immediately sent me to KU Med. That same day I had biopsies on my right side and a mammogram revealing another lump on my left side. The following day I had biopsy on my left side and MRI. When I left the doctor that day he told me to just remember my lymph nodes were clear. He was convinced I had a very aggressive breast cancer. The biopsies were inconclusive and Dr Conner performed a surgical biopsy.
I was diagnosed with bilateral breast desmoid tumors. Desmoid tumors are soft tissue sarcomas, also called aggressive fibromatoses. They are locally aggressive and can grow into and destroy tissue and even bones. They do not, however, have the capacity (they think) to metastasize throughout the body. Hence, some doctors consider desmoid tumors to be benign and not malignant. But regardless of the name, tumor-related destruction of vital structures and/or organs can be fatal.
I have found less than five cases in the world of patients with bilateral breast desmoids. I found amazing support through an online community through The Association of Cancer Online Resources (ACOR). It offers access to a desmoid tumor listserv which provides support, information, and community to everyone affected by desmoid tumors. I soon learned how extremely rare this cancer was. They do not know the cause or have a cure. Had I been at a less experienced hospital or had this condition ten years earlier it could have easily been misdiagnosed as an aggressive breast cancer.
My case was presented to KU Med tumor board to decide how to proceed. Dr. Conner called me the day before my 30th birthday to inform me they recommended a bilateral mastectomy. The mastectomy was performed Sept 2009. In the same surgery, Dr. Korentager planned on cleaning up what we thought was a keloid from a previous skin cancer surgery on my shoulder two years earlier. It turned out to be a third desmoid tumor on my shoulder. My initial surgery was followed by 6 weeks of radiation therapy, minor drug therapy, close monitoring and additional surgery. This type of cancer also has a very high re-occurrence rate. Less than a year later the cancer was back in my shoulder and I underwent additional surgery.
I have learned that you must be your own advocate, especially when you have a rare disease or cancer.
My children were 2 and 4 when I was diagnosed. To them my treatment, surgeries, and continued testing are just a normal part of life. I cherish every moment I have with them and my husband. It was not easy going through this process with small children but they were such an inspiration and made me smile everyday!