I received a lot of comments after last week’s blog which talked about choices people have in their medical care. I wanted to expand a bit more on this topic especially given the news about Angelina Jolie opting to remove her ovaries and fallopian tubes this week. Two years ago Jolie announced she was having a preventive double mastectomy because a blood test revealed she carried the BRCA1 gene. This inherited gene mutation put her at a substantial risk of developing breast cancer and ovarian cancer and she had lost both her mother and grandmother to related cancers. Her public announcement caused a lot of discussion and of course, any public figure opens themselves up for all types of judgement. Jolie’s medical journey created a stir and many women tried to determine whether they should be tested and then what to do with the results. Some people called her decision “brave” and “courageous” and others felt differently. Now, once again she is in the public eye as she decided to preventively seek surgery to remove her ovaries and fallopian tubes, another step in reducing the risk of developing ovarian cancer.
I have had mixed feelings as I listened to the swirling discussions around me. People asked me how I felt, what I thought and then they would tell me what they thought. I wasn’t sure how I felt. Did I think Jolie was brave? Courageous? I was struggling with what her message was and how people would interpret it.
Her situation is not one that most women will face. It is quite rare statistically speaking.
What strikes me is how complicated these issues really are and how simplistic people make them seem. Should everyone get tested? Should women think about removing their breasts or ovaries? Can only people with money have these surgeries? It is not really this simple.
We all want to take the risk out. If there were only a test or a procedure or a magic pill that would make that disease go away. The challenge is tests have their set of problems: expense, false positives, unnecessary surgeries and a whole lot of worry and weight of decisions of what to do with the information. Sometimes tests save lives and sometimes they don’t.
Removing one’s breasts is not an easy decision. And if it is, it shouldn’t be. I was faced with similar choices when I discovered I had breast cancer. There was cancer in one breast and not in the other. Because of other circumstances (that will come in another blog entry), I had a risk of developing cancer in the other breast. There were statistics thrown around and in the end, it was up to me to determine how much risk I was willing or not willing to take, understanding ultimately the risk, even after the most aggressive treatment, would not be zero. I learned that people I knew, friends and colleagues, were discussing my choices when I wasn’t around, and it struck me how they could make judgments when they were not personally faced with the many physical and psychological aspects of the situation.
The tough pill to swallow is that each choice comes with side effects. Removing one’s breasts and/or ovaries and fallopian tubes may seem clear-cut to some but in reality a hard choice with many lasting side effects that can make life difficult and uncomfortable. I applaud Jolie for bringing awareness to and creating discussion around very personal topics that years ago no one discussed. My concern is that people hear her message about taking control of their health and decisions but not think that there are easy answers. We cannot systematically remove organs that will guarantee a longer life. That is not what this is about. Jolie has a very rare genetic mutation. This type of elective surgery is not recommended for most women though in her individual case it made a lot of sense. Every woman or man who faces medical decisions like these should be educated and informed and ultimately there is no right or wrong answer other than what is right for that particular person.
To me, the bravery and courage Jolie has shown is not about having the surgery. Many of us have had to make surgical decisions we would rather not have. The bravery is in her decision to open herself up and talk about this very personal choice in order to educate both women and men. To talk honestly and openly about things that most people feel are pretty intimate. Celebrity or no celebrity, this is a big deal which will change her life with lasting effects. People can say what they want but truly there is no glamour in any of this. I believe she has created permission for people to talk more openly about sensitive topics and to become educated and feel supported to make decisions that make sense for them. And for that reason, I applaud her bravery and courage and wish her strength to deal with the physical and psychological side effects that lie ahead. I hope she continues to share her experience in the days ahead. We gain strength from those around us.