"Fox Chase Cancer Center’s team of doctors worked as a team to treat me."
I have always led a very busy life, between raising my children, working both as an art teacher and in the field of graphic arts, teaching religious school, and cantering and singing with the volunteer choir on Friday nights at my synagogue. However, extensive medical issues forced me to stop working and go on disability in 2013.
That same year, my OB/GYN suggested I get tested for the BRCA gene mutation that increases the risk for developing breast cancer. I met the parameters for genetic testing because I am of Ashkenazi Jewish descent, and I have first- and second-degree maternal relatives who had breast cancer, including my mother and her brother. In May 2013, I found out that I tested positive for BRCA1. I truly did not expect it to be positive. But, in retrospect, the break I received was getting tested and getting an answer. Otherwise, I would never have known or been able to be proactive—nor would I have found the team of doctors I did at Fox Chase Cancer Center.
After receiving my test results, I turned to my OB/GYN for guidance. He immediately sent me to the Risk Assessment Program at Fox Chase. His office arranged for me to be seen by a genetic counselor in a few days. The counselor was very informative and reviewed as much of my family history as I could provide. The counselor also advised that my children have a 50 percent chance of carrying the mutation and that they and my siblings and their children should be tested.
Learning I carried the BRCA1 mutation left me reeling. I wanted to be seen by a group of doctors with vast experience with this mutation. I have to admit that I was wary, so I sought several opinions. Because of my multiple health issues, doctors have often described me as “complicated.” I’ve been diagnosed with lupus, fibromyalgia, multiple cardiac issues, severe reflux, previous lung ulceration, chronic obstructive pulmonary disease (COPD), gastroparesis (slow motility of the stomach), colonic inertia (very slow motility of the colon), hypogammaglobulinemia (low gamma globulin levels), and severe osteoporosis. I was worried that I would continue to be considered a “problem patient.”
Even though Fox Chase is a cancer center, its staff considers the patient as a whole person, which is something I hadn’t encountered elsewhere, and, to me, it is a true miracle. Fox Chase Cancer Center’s doctors worked as a team to treat me.
Because of my compromised health, I most likely would have been unable to tolerate the aggressive chemotherapy used to treat patients with this mutation. Therefore, preventive surgery was recommended—specifically a prophylactic bilateral mastectomy and a salpingo-oophorectomy, removal of the ovaries and fallopian tubes. However, until many of my medical issues were resolved, I would not be able to have the surgery. Due to lung scarring, I was considered a high-risk surgical candidate, which makes it more difficult to have anesthesia. The cardiac issues were another concern.
I first met with a pulmonologist at Fox Chase. If I had any reservations about seeing yet another pulmonologist, they were completely dispelled after my experience at Fox Chase. My pulmonologist performed further pulmonary function tests and confirmed the difficulties I had with breathing, even while just sitting. Upon evaluation, we recognized that my gastrointestinal (GI) condition needed to be addressed first. I was so worried that I’d have to find another hospital to be treated for my GI issues, but the care team assured me I could be cared for at Fox Chase—even if I didn’t have cancer.
I was then referred to Dr. David S. Weinberg, a gastroenterologist at Fox Chase. Dr. Weinberg was patient and thorough with my care, and he is very knowledgeable about motility issues. He was attentive to my GI issues, and he referred me to surgeon Dr. Paul G. Curcillo. Dr. Curcillo and Dr. Weinberg worked collaboratively to develop an individualized treatment plan for me.
In April 2015, Dr. Curcillo performed a temporary ileostomy while his partner (and wife), Dr. Stephanie A. King, a gynecologic oncologist, performed a salpingo-oophorectomy at the same time. These were the first items checked off the list. One year later, in April 2016, Dr. Curcillo reversed the ileostomy, fixed the peristomal hernia, and created a temporary colostomy closer to the beginning of the colon. I am grateful to Dr. Curcillo who thought through my treatment plan and made my ostomies temporary so they could be reversed if the procedures did not remedy my medical issues.
My team of doctors worked extremely well together, in a way I hadn’t seen before. I continue to be seen every six months for checkups, including a mammogram and a breast MRI. Dr. Curcillo emphasized that I could call him at any time if there was a problem, day or night, and I did need to do so. He was kind, gracious, and understanding and was able to address my concerns.
As of May 2016, I am faring well and will be scheduled for a prophylactic bilateral mastectomy. My Fox Chase team now includes Dr. Sameer A. Patel, a plastic and reconstructive surgeon. He has offered me the option of getting an implant. Each of the doctors wants to be certain that the implants don’t hinder my breathing because they will go behind the chest muscle. Because I have COPD, it can be an issue.
I trust my team at Fox Chase. My doctors gave me my life back—in all ways, not only with the BRCA mutation risk. I know I’m in the best hands for my care.
In 2016, I turned 60 years old, but I tend to believe I am still in my 30s. I have two incredible and supportive children. My daughter was tested for the BRCA gene mutation and tested negative; my son will be tested for the mutation in the future. My friends and family continue to tell me that I haven’t looked this healthy in years. I am feeling more like I did many years ago. I still express my creative talent with my artwork, which is a huge part of my spirit, and I now create wire and bead kippot (yarmulkes) for women, jewelry, and Hamsas for wall art. I also love to read when I’m too tired to create.
I’m learning to pace myself but need to make myself happy. It gives me the strength to heal and to continue to move forward.