I was laying alone in a foreign country in a foreign bed when I found out I had tested positive for the “breast cancer gene,” or what most of you probably know as “what Angelina Jolie has.” It’s September 2013 and I’m at the Toronto International Film Festival promoting my film PROXY and I have what is more formally known as the BRCA 2 mutation—as my test results so lovingly called it: a “deleterious mutation” in the human genome that allows cancer to attack the breasts, ovaries, pancreas and even skin cells at a higher rate. I like to put it this way: Most women have a 12% chance of developing breast cancer in their lives. I have up to an 87% chance. Right.
At the time, I had no idea what that meant or the gravity of the situation. We all know someone who has been diagnosed with breast cancer. In my family, both of my grandmothers died from it and my aunt on my mother’s side is a survivor. So the idea that I may carry some mutation connected to breast cancer was no surprise. It was actually the occurrence of so much breast cancer in my family that qualified me for the gene testing with insurance coverage. Normally, the extensive BRCA tests can cost up to $3,000. For me, it was basically free… monetarily.
What I didn’t understand is what it would cost me emotionally. My first piece of advice is: Prepare yourself psychologically and create a support system before getting this test. If there was a warning on the prescription bottle, it would read something like: Side effects of finding out you are BRCA positive may include depression, anxiety, heart palpitations, feelings of loneliness and extreme fear.
For three years, I volunteered for a breast cancer charity called Bowling for Boobies where we raised money for cancer survivors and women currently in treatment in Los Angeles. I used to joke: “Some day you’ll be raising money for me!” Well, it was a joke until it became reality. Because when you are diagnosed with a gene that tells you exactly what the (terrible) odds are of you getting cancer, it’s all you start thinking about. Unlike being diagnosed with actual cancer, where there is a protocol for treatment, being diagnosed with a “gene” is somewhat of a “choose your own adventure.” Pick the wrong door and well… just hope you don’t make the wrong choice.
What on earth does it even mean to have a genetic mutation and what’s the difference between BRCA 1 and BRCA 2? Honestly not much—they both suck! The role of the BRCA gene is to help repair damaged DNA or destroy cells when DNA can’t be repaired. It acts like a brake pedal in the cell to prevent uncontrolled growth (of “bad” or cancer cells). If the BRCA gene itself is damaged, it cannot function properly and allows the damaged DNA cells to duplicate without control.
BRCA 1 is what Angelina Jolie has. BRCA 2 is what I have. Having a BRCA gene mutation means you are not only at higher risk for breast cancer in a lifetime (87% versus 12%) but also ovarian (54% versus less than 1%) pancreatic (up to 7%) and skin cancer. As Kristi Funk, MD (Jolie’s surgeon) explained to me, the important thing to remember is that there is an incremental increase in the likelihood of developing it. Funk has a very helpful fact sheet she hands out to her patients dissecting the exact numbers. For example, my risk by age 40 is 17% versus 0.46% for the general population. Age 50 is 34% versus 1.86%. Age 60 is 48% versus 4.26%. And so on.
To complicate things even more (did you actually think talking about “deleterious gene mutations” would be simple?), since I have not yet developed breast cancer, my risk has been reduced. Instead of 17%, my risk is reduced to 9%. If I’m still cancer-free by age 50, my risk is 26% instead of 34%. I like to call it beating the odds. Having a BRCA mutation also suggests there is the rare possibility that in cases such as my aunt’s, who just passed away and who I’m supposing had the gene (her doctors in Germany wouldn’t test her which in my opinion is negligence and is a major problem with the German healthcare system), you develop a rare non-malignant cancer that no one knows how to treat but that grows at a very rapid rate and ultimately kills you. The name of it is gastroenteropancreatic neuroendocrine tumors. Hers started in the pancreas. Red flag.
After burying my head in the sand for four months after testing positive (yes, I decided that enjoying TIFF, shooting a film in Montenegro, jet-setting to Spain to promote my movie there and completely ignoring the information I had received was the thing to do because how bad can a little gene mutation really be?), my little utopian bubble abruptly ended when my mom suggested we see a genetic counselor in January 2014. This is usually the first thing you do when getting diagnosed because they help you understand the information you’ve received and come up with a Plan Of Action (list of doctors, books to read, support groups, etc.). She was also the first person in a string of medical professionals to scare the shit out of me.
The genetic counselor I went to at Weill Cornell Medical Center in New York City, Ann Carlson, MS, was free and the first thing she did was ask about my family history to try and figure out from which side of the family the gene came (ended up being my father’s—he got tested as well). This is very important because the patterns and age at which other members of your family got cancer inform at what age and what kind of cancer you are most likely to get. Usually, the next generation gets cancer 10 years earlier than that of their relatives. If your aunt or mother was diagnosed with cancer at 45, you most likely will get it around 35. This is not an exact science but that’s the general rule of thumb, according to my doctors.
I’m not going to lie. My life after January 2014 changed. For the next year, I went to doctors, read about cancer prevention, listened, cried, listened again, researched, cried, researched again, spoke about my predicament, cried and wrestled with my options. With an 85% likelihood of getting breast cancer in my lifetime, the first decision I had to make was: What are my breasts worth to me? Are they worth taking the chance that cancer might develop in them and, if it does, could spread to other places in my body? But will it be OK to never have sexual pleasure from your nipples being aroused again? Will it be OK to never breastfeed? Being single, what would that first hook-up with a new guy be like? In my business as an actor, what would happen if I ever had to do a love scene again?
During this time, I was offered a role in a musical, The Devil’s Carnival: Alleluia, and one of the scenes required me to be topless while Paul Sorvino, playing God, fed me grapes (yes, this really happened). For the first time in my career, the idea of being topless in a movie didn’t concern me one bit. In fact it was an exciting prospect: My breasts would get a last hurrah in their natural form!
The fear surrounding this decision was oftentimes incapacitating.
To put it in context, this time was right around when Angelina Jolie was very vocal about getting her double preventative mastectomy. In my mind, according to the media and popular belief, there was no other choice. I would be dumb (I was actually called this by one surgeon when I asked if I could prevent cancer through nutrition and holistic methods like acupuncture) if I decided not to get rid of my breasts. In fact, I went to see three surgeons and two plastic surgeons, one in New York City and the other in Los Angeles, and there was no dissent as to what my best option would be—it was a definite bilateral removal. The only surgeon who was a bit more liberal was UCLA’s Helena Chang, MD, who said I could wait a few more years to make my decision, as I did not have any breast cancer in my immediate family.
A double preventative mastectomy involves removing all breast tissue and having reconstructive surgery of the breasts with artificial implants—saline or silicone. There is the possibility of having nipple-sparing surgery which makes the breasts look much better and more natural, but of course this means that you are keeping some of the at-risk cells. I looked through albums upon albums of reconstructed breasts at the plastic surgeons’ offices and all I could think (as they boasted of their great work) was, “These look horrible—I don’t want any of these breasts!” Not to mention it’s a very invasive surgery and takes a minimum of two months to recover. People never seem to tell you that the process is extremely painful and quite traumatic for the body. Again, better than cancer… but worth it preventatively?
No. Not for Me. Not Right Now. After a year of research and soul searching, my decision was that I would re-evaluate getting a double preventative mastectomy when I’m 40 and until then alternately get an MRI and mammogram every six months as preventative measures. I also get tested for the CA-125 marker every six months when I get my blood work done. And I get a transvaginal ultrasound every three months to monitor my ovaries. This way, if cancer develops, I will find it at a very early stage.
There is no easy answer. There is no perfect choice. And my decision to keep my breasts for now is not a popular or suggested one. I was rather sadly confronted with its unpopularity at a support group for BRCA-positive women this past February, where out of five women, I was the only one who hadn’t had a preventative operation—and boy could I feel the judgment. Because it’s such a difficult decision to remove your breasts, I felt the other women were upset that I had decided to keep mine. Because what if I never got cancer? What if they would have never gotten cancer?
I felt they had gone the route the doctors most advised and it was hard for them to understand that I had decided to find my own path. How could I take such a chance at death? There was recently an article in The New York Times written by Elizabeth Wurtzel called “The Breast Cancer Gene and Me,” in which she says “I am not sure why anyone with the BRCA mutation would not opt for a prophylactic mastectomy.” And I guess my only answer to that is because I believe I can beat the odds, as “dumb” as that may be.
Getting the BRCA test is an incredible scientific advancement and I suggest everyone get it if they have history of breast or ovarian cancer in their family. It’s what you do with that information that I’m suggesting you take your time deciding. Make decisions that are right for you. Don’t be bullied or fear mongered by your doctors. They are correct in being cautious but remember their interest is to prevent cancer at all costs without the consideration for the emotional toll this has on a woman. An emotional toll that in and of itself could lead to cancer in other parts of your body if you are already prone to get it.
Doctors would argue that I’m being irresponsibly New Agey here. Again, make your own decision and most importantly listen to your instinct. I’m just living one day at a time, appreciating the moment. The only thing my breasts are upset about is that they didn’t quite get their last hurrah in The Devil’s Carnival: Alleluia because the producers ended up wanting the movie to be more PG rated. We’ll just have to find another project for them to shine.