Somehow I never thought I’d be writing a post about Angelina Jolie. And while I loved how tough her character was in Salt, I’ve never imagined lauding her in a public forum for her toughness. Last night I tried several times to start a post about my surgery—trying to figure out how to share the process. It’s a strange thing to share with a big audience. I’d type, I’d delete. I’d type again, let myself get distracted, then I finally gave up and headed to bed.
I woke up this morning to emails from two friends who’d already seen the news—the first complimenting me on being ahead of the trend yet again. The second, from a friend who walked this road before me, commenting that we have been preempted as the cool faces of breast cancer. Reading Angelina Jolie’s op-ed piece in the Times about her decision to have a double mastectomy and reconstruction left me in unfamiliar territory– I’m truly impressed by this celebrity. Granted, I’m sure someone helped her find the eloquent words to share her story. But still,it’s her story, and it’s not an easy story to share.
My story is not the same as hers. I did undergo the same genetic testing, not because of a strong family history, but because I was diagnosed with aggressive cancer as a young woman, and I was so thankful for the negative result. And the story of my surgery is not identical to hers, either. My trip to the surgeon was not by my own choice, it was a medical necessity. But while surgery was necessary, the decision to have a bilateral mastectomy was mine. It is not a decision to be taken lightly, but one that I never questioned. Last night I was searching for the words to explain what I went through without being graphic and without sugar coating it, either. It seemed important to share that first and foremost, reconstruction following a mastectomy is a process. The process is started during the original mastectomy surgery, but it’s not complete for months, after weekly or biweekly appointments with a plastic surgeon and between one and three more surgical procedures. In her piece, Angelina Jolie (what do I call her? Angelina seems too familiar, Ms. Jolie sounds ridiculous. AJ, maybe?) also debunked one big fear from years past. This surgery does not leave one deformed, it doesn’t steal a woman’s beauty or femininity. A talented surgeon can achieve great results but it takes time and patience.
I talked before about the fact that I did the genetic testing early on after my diagnosis. AJ mentioned the great cost of this testing and the fact that cost makes it inaccessible to many. While I don’t think that it’s fair for companies to make obscene profits at the cost of someone who is sick, I can appreciate the work that sequencing those genes requires, not to mention the cost that went into the discovery of the gene and the development of a test that can be run on nothing more than some mouthwash that’s been swished around a patient’s mouth for a minute or two. But what AJ failed to mention is that not everyone needs this test. In fact, not everyone whose mother or aunt or sister has died of breast or ovarian cancer needs this test. Many large cancer centers have genetic counselors on staff who spend hours discussing cancer risk and the implications of a positive test with patients before testing will occur. Some early fears of the implications of a positive BRCA test have dissipated (inability to get a job or insurance chief among them), but the decision to even be tested is not one to be taken lightly. And in the case of those who are truly at a high risk of being BRCA positive, many insurance companies will now cover the test.
Last night, as I struggled to write this post, I would have never imagined that Angelina Jolie would help me write it today. But I think given a difficult circumstance, she made a good decision for the right reasons, and I applaud her boldness to share it. Even as one who will never face the same circumstance, I appreciate that she had the toughness to share her story, and that she helped me share mine.