A Sister's Survivor Story
FORCE Outreach Coordinator
On December 22, 2010 at 8:30 AM, I received an unexpected wakeup call from my sister, Carolyn. She informed me that she had taken a test to determine if she carried a genetic mutation for the Breast Cancer gene called BRCA. She explained that she was, in fact, a carrier of the BRCA1 gene mutation, which causes as much as an 85% lifetime risk of breast cancer, and a 60% chance of ovarian cancer.
Carolyn insisted that all of the women in the family be tested as soon as possible. Our mother was tested and learned that she didn’t carry the gene mutation — so it was our late father who was the carrier. With that one phone call, she saved my life.
As a member of Hadassah, I volunteer with the Check It Out program which promotes breast cancer awareness for both adults and teens. The day after Carolyn called, I contacted the nurse and genetic counselor who facilitated the Check It Out presentations. She squeezed me in on January 11 for genetic counseling. My sister, Sherry, and Carolyn’s daughter, Eva, joined me for the session and test. About three weeks later, we learned that Sherry was in the clear but that my niece and I carry the BRCA1 mutation. Given my age and stage in life, the recommended protocol was two risk-reducing surgeries: a bilateral mastectomy and a salpingo-oophorectomy to remove my ovaries and fallopian tubes. I decided to begin below the belt.
The day after receiving my genetic test results, I made an appointment with gynecologic oncologist and surgeon, Annette Bicher, who received part of her training at MD Anderson. I figured she must be good, plus her office was located next to DSW! At that office visit on February 3, I opted to take the first surgical date available since I wanted to be in good shape for my son’s college graduation in May. Six weeks later, I had the surgery. Dr. Bicher told my family that the surgery went well and that she saw no evidence of disease. On April 7, at my first follow up appointment, however, Dr. Bicher informed me that I had cancer in my ovaries and fallopian tubes. Sherry rushed to tell Carolyn, who later underwent the same surgery.
The rest of April was busy with lab work to determine the type of cancer. After two rounds of tests, the lab still couldn’t identify the specific type of cancer, so in May, my slides were sent to Johns Hopkins University School of Medicine. On May 20, while we were enjoying my son’s graduation luncheon, I received a call telling me that it was fallopian tube cancer, Stage II C.
On a Wednesday in mid-June, my husband Daniel and I drove to Johns Hopkins to meet with Dr. Deborah Armstrong, who recommended that I have a staging operation immediately to determine whether the cancer had spread and to complete the hysterectomy. Dr. Armstrong contacted Dr. Bicher during our session, and by the time we left her office, we understood that the operation would take place on Monday. The surgery went well; I received great news; there seemed to be no cancer. I spent July recovering.
In early August, I commenced weekly chemotherapy, which lasted into December. My good luck continued; I did great. The year 2011 ended on a high.
I spent the first half of 2012 recovering and catching up on work. I felt so strong and encouraged that I pressured my doctors to agree to the bilateral mastectomy six months early so that I could complete my risk reduction. In mid-June, I had a prophylactic bilateral mastectomy with reconstruction. Six months later, I began reconstruction of my nipple complex. As 2012 ended, I was relieved that I was done but for quarterly surveillance.
So you see…Carolyn saved my life and her efforts may save your life or the life of someone you love. We challenge you to reach out to one person each week. The first question to ask is: “Do you have a family history of cancer?”
Following are the three most common mistakes that I have encountered since becoming an outreach coordinator for FORCE...
1. The women on Dad’s side of our family had not died of cancer. What women? We had no family history from the old country. My father was one of three brothers. Both of his brothers had sons. But my father had prostate cancer at 55; his eldest brother died of pancreatic cancer at 47; and his other brother had prostate cancer. In addition to female cancers, increased risk of melanoma, prostate and pancreatic cancers are associated with BRCA mutations. When you consider your family history, please understand that hereditary female cancers may be present even though there is no known family history of those cancers. It is astonishing but my gynecologist did not know that! Better-informed physicians and medical histories that go beyond the immediate family will save lives.
2. It is critical to know whether female cancers are hereditary. It matters because of what it means for one’s screening and treatment plan, which may include additional surveillance, chemoprevention, risk reducing surgeries, and specific drugs. It matters because there is a 50% risk of passing the mutation on to your children. Removing my ovaries reduced my breast cancer risk by half, but the risk is still significantly higher than for the general population. Even after all of my surgeries and chemo, I still have a 30% risk of recurrence and a risk of getting additional primary cancers.
3. As Carolyn discovered the hard way, the BRCA test has improved, so anyone who tested before 2006 should consider retesting. The test for cancer-causing gene mutations is becoming increasingly sophisticated, but there is still much progress to be made.
It’s important to note that there are other hereditary cancer mutations such as Lynch Syndrome and Cowden’s Syndrome.
We offer the guides on this site to you in celebration of Carolyn’s life to educate families about life-saving steps that you can take now. Please accept our challenge and join our commitment to saving lives. Thank You!
Photo: Francine with her sons, AC and Reuben – by Judy Licht Photography