Home > Get Involved > Your Stories > Shirley: Taking charge of your own care

Since September 2003, I have been living with metastatic breast cancer.

 

My experiences underscore the importance of taking charge of your own care. When my metastatic disease progressed, I did not give up on myself. I educated myself and became my own advocate. Because I was able to find the right doctor for me, get the best treatment for my tumor, the course of my disease changed.

 

Six years ago I was given 1 year to live... and here I am today... standing strong!

 

I was first diagnosed with primary breast cancer in 1991. I was told the cancer was ductal carcinoma in situ and ER/ PR positive. When my doctor called me on the phone with my diagnosis... my mind went wild with worry about who would raise my two young sons if I died. That was an awful phone call, an awful way to hear such devastating news. I knew nothing about cancer and I was terribly frightened. The doctor was leaving on vacation and wanted me to make an appointment for when he returned.

 

Instead of waiting, I found a doctor who was not on vacation... and I chose the most aggressive treatment. I wanted my cancer to be gone forever. Even though my cancer was not invasive, I wanted aggressive surgery, a double mastectomy. I believed that I was rid of the disease. I thought I was safe. I thought I was cured.

 

Twelve years later, I began to feel really tired. I was working a 10-hour days and juggling career and motherhood. It made sense to me that I was tired. Then I developed a pain in my rib. First I had a
bone scan and then a biopsy. The breast cancer had metastasized to my spine. I took a deep breath and tried to move forward.

 

Because my primary cancer was ER/PR positive, the doctor prescribed Arimidex, a treatment for ER+ breast cancer. After ten months of Arimidex, a suspicious lymph node in my neck appeared. Scans showed the cancer had spread throughout my skeleton and into my liver. My oncologist recommended I receive a taxane chemotherapy along with the arimidex.

 

I knew things were bad... but instead of giving up, I got to work... educating myself. First, the internet searches... then reading the information... and reading it again and again... making contacts... asking questions... meeting up with different doctors at different medical centers. My efforts paid off. I found a different oncologist who told me she wanted to learn as much as possible about the biology of my tumor before she selected a treatment.

 

A liver biopsy was done.... and we learned the cancer was hormone negative and Her2 positive. That was EXTREMELY IMPORTANT! That's when everything changed for me. With an accurate diagnosis for MY tumor, my treatment could now be personalized for me. I knew this would make a difference.

 

After six weeks of treatment, my largest liver tumor was greatly reduced. After ten months of treatment, there was NO EVIDENCE OF DISEASE in my liver or in my bones on radiological scans. It has remained that way to this day. I know that I am not cured, and I continue with regular treatment. I have been blessed. Every breast cancer patient should educate themselves about their particular type of cancer and seek out a doctor who will offer them personalized treatment.

 


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