I have to believe our collective experiences -- good and bad -- occur so that we may learn and perhaps even help others avoid or handle circumstances better. If my harrowing experiences with BRCA didn't net some sort of positive, I could have wallowed in self pity for years to come. I have always craved to do something, ANYTHING, to help other women avoid what I have encountered. So when Dr. John Jain of the Santa Monica Fertility Center and I sat down and he discussed his study, which focused upon preventing the transmission of the BRCA gene to the next generation, I fervently stuck my hand in the air and asked "where do I sign up?"
His idea is to identify whether or not the gene is located in the egg proper. This would allow women to only make use of eggs that were without the gene. The feasibility of identifying "geneless" eggs, making sure they were safe and useable, and only utilizing those, would be the way to eliminate future generations, including my children, from having to endure the path my family did. Although there was nothing I could do for those who had the gene already, I was ready to be the first guinea pig to help the next generation.
Dealing with this gene has effects that extend way beyond the person afflicted with cancer. Growing up with the BRCA mutation looming overhead caused an enormous amount of strife within my family. Everyone approached the possibility of having this gene differently. Many kept their heads in the sand and simply went along with life as if there was nothing wrong, only to one day at the age of 40 develop breast cancer. Others refused to get the test, thinking if they did not know the truth, they would somehow remain impenetrable. Family members with children who tested positive had a double whammy. They had to decide what to do about their breasts and ovaries while facing the deep remorse of possibly having passed this mutation to one or all of their children.
My mother felt a large degree of responsibility for potentially passing the gene on to me. Accordingly, she remained close-lipped about her breast cancer, telling me only after her lumpectomy and chemo were finished. Her attitude was always, "why not me, why somebody else?" By this point, I had become so desensitized to death, sickness and chemo that my reaction was almost emotionless. I learned to shut up, suit up and show up. I knew with cancer permeating every single branch of my family tree, I was going to have to be my own advocate; my well being and life were solely my responsibility.
There weren't many options out there. I was getting breast exams and mammograms by the time I was 21. I had trans-vaginal ultrasounds to examine my ovaries too. It was unbelievably depressing and I didn't even have cancer. I had "nothing to complain about" ... yet, I was just checking on my ticking time bomb. Through all of the tests and biopsies, I remained completely disconnected. The only option I had was to try and catch it early.
Somehow I intuitively believed that I would end up with breast cancer and then have to undergo chemotherapy and lose my hair. I loved my hair and losing it was not an option. It sounds ludicrous, but that played a large role in the decision that most people considered a drastic measure. I had witnessed so many of my relatives go through such horrible treatments to spare their lives, and they all ended up having to get double mastectomies anyway. They had children, jobs and homes, and had to go through chemo when they left work. I would not have that life. I was determined that if I was BRCA positive, I would take absolutely radical measures to avoid what I believed would be the inevitable outcome.
In February of 2005 I got tested for the BRCA gene. I was positive. Within one week I had an appointment for my prophylactic double mastectomy. At 28-years-old, I decided to take what was destined to be a life sentence and turn it into a positive.
In Los Angeles, a town where women are going in droves to plastic surgeons to enhance their breasts, I was electively going to remove mine. People thought I was insane. They gave me unsolicited advice from holistic options to quitting carbohydrates and sugar to stave off the fate of this gene. I was steadfast in my choice: My breasts were not going to kill me. I would not be a statistic. I could not take any more biopsies and I would not live with the knowledge that one day I would end up being like the rest of my family -- a survivor. I didn't want to "beat" anything -- I didn't want it to be part of my story.
There was still the question of the ovaries. The fear of getting ovarian cancer terrified me. It has a much higher fatality rate than breast cancer. It is my understanding that there is no real way of detecting ovarian cancer early because this type of cancer tends to hide, and it is usually in stage 3 or 4 when it is finally detected. This fear paralyzed me. It was too much to risk. As a 34-year-old childless woman, the idea of having a prophylactic oophorectomy (the removal of the ovaries and fallopian tubes) was heartbreaking. Although it wasn't my life long dream to be a mother, I always thought that I would have the option. I was at a crossroad. I could date like it was a job, get a husband, get married and get on the fast track to starting a family. That would put pressure on a potential suitor and me. I didn't want my dating life to become interviewing appropriate "matches" in the hopes of beating the time clock in order for me to have my ovaries removed by 38, as suggested by my doctors.
I had been so proactive with my breasts, to a point that was shocking to most. However, the idea of not being equally proactive about this threat was unbearable. After researching every possible way of preserving my reproductive freedom, I found Dr. John Jain at the Santa Monica Fertility Center. He was at the forefront of the egg freezing movement. A fairly new alternative, it became the option that would allow me to remove this fear from my body that had owned me for years.
Upon meeting him I was quickly put at ease. He was all too familiar with the BRCA situation. In fact, he had made part of his life's work finding a way to eradicate this gene. We talked about how hard it was to go through life with this sort of tough exterior, all the while knowing that you were fairly powerless over your own destiny. He understood my challenge. He knew the risks. And he was set on helping future generations, and my children, never having to face this threat again.
This is the second article in a series about the BRCA gene in my family and one doctor's efforts to eradicate the transmission of this mutation to the next generation. To see the first article, please click here.