Kathleen: A Call to Action
Breast cancer in the breast never kills. Once the cancer has spread beyond the breast, a patient is metastatic. All breast cancer deaths are the result of metastatic spread to organs and bones.
In September, 2007, my annual mammogram showed extensive lobular carcinoma in situ (LCIS) and I was advised to have the breast removed. Having an extensive family history of breast cancer, I opted for a bilateral mastectomy and immediate reconstruction. After a 21 hour operation and months of recovery, I returned to my full time job and to my part time gig as a fitness instructor at the YMCA.
Among women with successfully treated early stage breast cancers, 30% will suffer recurrence. Breast cancer can recur, even 20 years later. It often returns as metastatic disease.
A pink crescent appeared near my left armpit in March, 2009. It looked like irritation from my sports bra. Then it began to spread to my left breast. My Primary Care Physician diagnosed mastitis, and placed me on an antibiotic. A breast MRI showed thickening of the skin. A punch biopsy, where a small area of the skin is removed, was sent to pathology. Diagnosis: Inflammatory Breast Cancer. IBC is a rare and aggressive type of BC. I was also Stage IV, as the cancer had metastasized to my lower right spine. Inflammatory Breast Cancer is never diagnosed before Stage III or Stage IV. It invades the dermal lymphatic system, where it can easily spread. Unlike more common forms of breast cancer, there is often no lump. It is not detected on a mammogram.
I was fortunate to have a complete response to my initial chemotherapy. In late 2009 I had my reconstructed breasts removed, followed by six weeks of radiation in 2010. Since then, the IBC returned on the right chest wall. I am now on my fourth chemotherapy regimen.
Chemotherapy has numerous side effects. Fatigue, hair loss, lymphedema, peripheral neuropathy, digestive problems (diarrhea, constipation, heart burn, reflux, gas) and loss of libido are common. Treatment accelerates aging and can decrease cardiac efficiency. I have lymphedema, neuropathy and digestive problems. Fatigue is constant. My body has aged considerably. My arthritis is significantly worse. I have mild diarrhea daily. I am bald.
Metastatic patients have scans every three months. Waiting for the results almost always causes anxiety. If the results are clear of new disease and if known areas have not progressed, we are considered "stable". My recent scans have shown progression in several areas on my spine and pelvis. After over three years of chemotherapy, my cancer is not responding to treatment as well. Subsequent treatments are expected to work less well than the one before.
Metastatic breast cancer causes 40,000 deaths in the U.S. every year. The number of deaths have decreased little over the past twenty years. Yet MBC receives only about 5% of the available research dollars. The only way to stop breast cancer deaths is prevent it, or stop the metastatic process.
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