By now, you’ve heard about and read the March 24th New York Times article, “Diary of a Surgery” by Angelina Jolie. In it, Jolie shares her decision to have a laparoscopic bilateral salpingo-oophorectomy because of her risk factors for both breast and ovarian cancer after having tested positive for carrying the BRCA1 gene mutation.
As I woke up that morning and scrolled through my emails where I have a daily google search on breast cancer so that I see any new articles that appear on the topic, Jolie’s article was the first I saw. As I read it, I began to tear up. As a woman who has experienced breast cancer myself, I immediately felt a deep sense of empathy for what she was going through. For me, this is not a discussion about a celebrity, about whether or not you like the way she lives her life. It’s a discussion about another woman, who like myself and many other women I know is going through a tremendously difficult life decision because of cancer.
What hit me the hardest was when she very matter of factly spoke of the fact that the procedure was going to throw her into early menopause at the age of 39. I hate to think of a woman at the age of 39 having to deal with the negative impacts of menopause. I realize that this could perhaps be considered a minor thing, given the important end benefit of extending her life, but menopause is not an easy thing for anyone to go through even at the typical age of 50-55 and to be thrown into it through this procedure at the age of 39 is quite difficult.
I was pre-menopausal until I started chemotherapy and then went into menopause literally overnight once I started treatments, with very immediate and intense results like hot flashes, night sweats, insomnia and joint pain. My oncologist told me that it’s much harder to be thrown into menopause via chemotherapy or surgical intervention, as your body goes from 0 to 1,000 immediately with these treatments, vs. when your body more naturally goes into menopause over several years without them.
The second piece that most hit me was when she spoke of meeting with her surgeon who also treated her mother, and how the two of them broke down as the surgeon told her that she looked just like her mother. I can only imagine what it would be like, to face the fact that her mother died of cancer and then use that knowledge to make the decision to test for the BRCA1 gene which in turn, is what ultimately informed her decisions for preventative surgeries which will hopefully allow her to live long past her own mothers life span. There’s something very bittersweet about that.
What surprises and disappoints me are the harsh comments on Facebook and in blogs about Jolie from other women. I’m saddened and surprised at those who don’t show empathy for her, whether or not they like her politics, celebrity or her lifestyle. It’s not about being a celebrity anymore, it’s about another woman faced with a very difficult choice who has chosen to share it with others in the hopes that she can help them by sharing what she’s learned from her own experience.
Wouldn’t a community of women who’ve gone through breast cancer empathize with someone else, no matter what their lifestyle, who has to undergo the same difficult choices we had to make?
I truly believe that because of Jolie speaking out so candidly about her experience, many more women will be aware of the BRCA1 and BRCA2 test. And also, by discussing her treatment options and choices, Jolie brings awareness to the fact that women have choices in their own medical treatment decisions and should be their own advocates. It’s also important that Jolie explains that because her mother, grandmother and aunt all died of breast or ovarian cancer, in addition to her BRCA1 results, she made the difficult decision to have the procedure. Her ability to share how she reached this decision can benefit anyone else going through this difficult choice.
When I was first diagnosed with breast cancer, I was very surprised because no one in my family, other than a cousin, had ever had breast cancer and no one in my immediate family ever had any type of cancer. It was only later as I did my research that I learned that in fact only 5-10% of all breast cancers are thought to be hereditary and caused by genes passed from parent to child.
I had the BRCA1 genetic testing when I was diagnosed over 5 years ago, well before Jolie shared her story, so wasn’t directly impacted by her story. I was lucky that my hospital had a breast care coordinator on staff who made me aware of the BRCA1 and BRCA2 test and other genetic tests like Oncotype DX, so that I could research them and learn more about whether or not they would be beneficial in my specific case.
Not only was I was fortunate to be advised by my hospitals breast cancer coordinator about the BRCA1 and BRCA2 test, but my hospital also had a team of genetic counselors who championed my case with my insurance company in order to get the test paid for, as the $3,000 cost was yet another worry and financial strain in the midst of all the other things that a breast cancer diagnosis brings.
I know there are many readers who would also have found the uncovered out of pocket cost for the test to be difficult and I would encourage you to ask your oncology team for help with options such as mine. I tested negative for the gene and so at least had the solace that comes from knowing that both of my sisters and my own children don’t have a genetic predisposition for breast cancer, which I found reassuring.
Even with all the awareness and information that’s out there about breast cancer, many of the women I’ve spoken to still don’t really know that they can take an active part in making treatment decisions in partnership with their doctors, vs. having their doctors dictate their treatment plans without any collaboration between doctor and patient.
It’s not just women like Angelina Jolie who have these choices. We are all capable of becoming our own health care advocate. Ask questions, do the research, read, talk to others who may have gone through breast cancer, get 2nd opinions and don’t back down until you are satisfied with your team of doctors. I’m not saying that it’s easy, it’s not, but it’s critically important in matters of health to be informed and to be an active participant in your treatment.