The tragedy of my family story began Sept. 11, 1946. That was the day my mother died of breast cancer. She was 32 years old. In Sept, 2004 a CT scan revealed that I had metastatic ovarian cancer. Surgery followed in Oct. and showed that I had stage 3C ovarian cancer. This is considered late stage and survival is usually less than five years.
After six months of chemotherapy I went for genetic counseling and testing at the urging of my surgeon. The results showed that I have a mutated BRCA1 gene. This mutated gene greatly increases the risk of developing ovarian and breast cancers.
Because of the genetic nature of my disease, my two daughters underwent the genetic testing. They both tested positive for the mutated gene.
My younger daughter, Shari, aged 39, had what was supposed to have been prophylactic bilateral mastectomies and have her ovaries removed. The surgeries should have reduced the chance of her contracting either disease. During the surgery she was found to already have metastastic stage 3C ovarian cancer. She underwent two rounds of conventional chemotherapy and participated in two investigational studies all to no avail. Shari died Oct. 18, 2007 nine days before her forty-first birthday.
The last two years of Shari’s life were torturous. She was in and out of the hospital numerous times and was in constant pain from the treatments and the advancing cancer. The last month of her life was spent in a hospice. The realization that she would not see her children grow to maturity was agonizing for her. She left behind two wonderful daughters (who will have to be tested when they reach the proper age), a loving husband, parents, a grandmother, a brother and a sister, and many other relatives and friends whom she loved and was loved by in return.
Shari’s sister Ellen also tested positive for the BRCA1 mutated gene. She underwent the same surgeries and thankfully, was found to be cancer free. Her daughter will also have to be tested when the time comes.
Could this tragedy have been averted? No doctor prior to the surgeon that operated on me suggested genetic testing although they all knew my family history. Being of Ashkenazic Jewish ancestry increased the possibility of having this mutated gene which can be passed either maternally or paternally. Even my son and my grandson have greater than normal chances of contracting male breast cancer if they have the genetic mutation.
Some questions that come to mind about all this are:
Why has there been no definitive test developed for this disease that will alert people in its early stages? (The CA125 blood test is a highly inaccurate marker for this disease.)
Why is it taking so long for new drugs that combat this disease to reach the market?
Why do doctors pass off what might be symptoms as typical “women’s problems”?
Why is there so little media attention being paid to this killer of women?
Could part of the answer be that it is because of the poor survival rate among ovarian cancer patients as compared to breast cancer patients?
Genetic counseling and testing cannot be an option for women whose family histories include relatives with breast or ovarian cancers. A woman who ignores these concerns is gambling not only with her life but possibly with the lives of her children and siblings.
My name is Paula Klein. I did not have the genetic testing done until it was too late for my daughter and me.