In 2004, Stephanie Nelson Robin was living in Boca Raton, Florida. She was the mother of two young children, Coby (4) and Skylar (2). One morning, while playing, Coby accidentally kicked Stephanie in the breast near her armpit. It was sore and she felt something hard and assumed it was just a bruise. After the bruise persisted, she went to a doctor and was told it was probably a hematoma and to wait a month to see if it disappeared. Stephanie had recently been made aware of a family history of breast cancer and advocated for herself. She requested a breast exam, even though she had a clean mammogram six months prior. The results from the mammogram were bad. At age 36, cancer cells were found in her breast and a large tumor was identified. A biopsy confirmed the devastating news. Stephanie had Stage IIB breast cancer. Due to her young age and family history, she was advised to test for the BRCA gene. No one had ever mentioned this gene to her before. She tested positive for BRCA1. More bad news followed as she learned her tumor was invasive, aggressive and triple-negative, which ruled out most standard breast cancer treatments at that time.
The next few weeks were a blur and an emotional rollercoaster consisting of multiple doctor visits, different treatment options and trying to absorb the impact on her small children. Because of Stephanie’s young age, BRCA1 gene mutation, triple-negative tumor, size of the tumor at 5 cm, and discovery of cancer cells in the lymph nodes, Stephanie opted to undergo a double mastectomy with reconstruction, a full hysterectomy, oophorectomy and months of dose dense chemotherapy at the Lynn Cancer Center in Boca Raton. Stephanie opted for the most aggressive treatment for herself and her family.
Once treatment was completed, Stephanie followed a protocol of full body scans every three months. In 2006, almost two years from the original diagnosis, she received more devastating news. A small spot was identified on her lung. She prayed it was a new primary lung cancer and not a metastasis of the breast cancer. She went to Memorial Sloan Kettering in NYC for diagnostic lung surgery. It was determined that the breast cancer had spread to Stephanie’s lung and her diagnosis became Stage IV metastatic breast cancer.
Stephanie immediately started a new chemotherapy regimen at the University of Miami Sylvester Miller Comprehensive Cancer Center. After 14 months, the cancer returned to Stephanie’s lungs. After two additional failed chemotherapy treatments, she was advised that she was likely going to die and told to get her affairs in order. The five-year survival rate for Stage IV breast cancer was less than 20%.
In December 2007, Stephanie’s brother learned of a Phase 2 clinical PARP-inhibitor trial study at Memorial Sloan Kettering in NYC led by Dr. Mark Robson. Fortunately, Stephanie’s cancer fit all of the criteria to be admitted into the trial. Within six months, the tumors in her lungs shrunk. Within a year, her doctor told her she was NED (no evidence of disease). Remarkably, Stephanie has continued on the same clinical trial for the past 15 years and is doing great! She remains the only active participant on the trial out of 72 women who initially enrolled. While deeply saddened about the loss of all of those other women on the trial, she feels extremely blessed and lucky. She continues to support other men and women affected by breast cancer through Think Pink Rocks.
Beneficiaries include Memorial Sloan Kettering Cancer Center and the Breast Oncology Center at the University of Michigan’s Rogel Cancer Center