I’ve thought about doing this for a few days now, and the itch hasn’t gone away. I decided to put this down because I think it’ll make me feel better for no other reason than I did it and now it can’t bother me anymore. This is an open letter to Melissa Etheridge in response to her recent promotional appearances.
I don’t know you, and I can’t say that I’ve ever been a fan of your music simply because I’ve never really listened. Before last week, if someone had asked me what my feelings on you were, I wouldn’t have had an answer. You’re a strong woman who beat cancer, and no matter what, that’s awesome. I would say that even makes you an awesome person. But right now, even though you will likely never see this and probably never care, I find you abrasive and careless.
I am the first to admit that I don’t like the term “The Angelina Effect” when it comes to discussing BRCA or any other gene mutation, although that seems to typically refer to the prophylactic surgeries that go along with the gene mutation. That phrase makes it seem like removing my breasts is something that I did because it was trendy. It’s not. And, by the way, I did remove my breasts. My mastectomy, while now a defining part of me, is just that: a part. Let me tell you about myself so you get a better picture. I am 26, I’m unmarried, I have no children, I love to travel, I have friends scattered all over the world, my favorite band is Snow Patrol and my favorite weekend ever is when I saw them twice in New York City with my friends, and I want to become a pilot. I am a whole person who happens to have the BRCA2 mutation, just like you.
I am still home recovering, so I got the opportunity to see you on the Dr. Oz show. Now, I take anything that Dr. Oz has to say with a grain of salt since he doesn’t seem to have the shiniest reputation in medicine. However, he is charismatic and engaging, which makes him easy to watch. I was interested to see what you had to say, but I was turned off the moment you insinuated that women remove their healthy breast tissue out of fear. Not only was I turned off, I was angry. Irrationally so.
I’ve had an incredible opportunity to “meet” women from all over the world and from all walks of life since I found out I had the BRCA2 mutation. Before that I didn’t know anyone else who was BRCA positive, so I sought out support groups and communities of women who would understand, maybe help guide my path, answer my questions and quiet my concerns. Some women have opted for high risk surveillance because of where they are in their lives, while some have had surgeries to remove their breasts and/or their reproductive organs (plenty of whom were not nearing menopause).
There is not one woman that I’ve encountered or whose story I’ve read who made the decision to have surgery or postpone it without a lot of consideration. This is not a decision that is made lightly. You didn’t have a mastectomy as part of your cancer treatment, so I don’t expect you to understand, but let me try to explain the considerations that we face.
We live in a society that has so sexualized a woman’s breasts that breasts are almost a standard of femininity, of womanhood, of sexiness. So, when you are presented with surgery, you consider:
- The fact that yes, you can reconstruct but your new boobs will probably never look natural. You may even undergo numerous surgeries to get them looking good enough to live with, to look nice in clothes.
- With multiple surgeries comes more scars on top of the angry ones going across your chest where they actually removed the breast tissue and the scars on your sides where you’ll probably have drains.
- The limitations that come with surgery: lifting, stretching, driving. They’re temporary but no less of an impact. I mean, think of the moms who can’t lift their children, the loss of independence.
- As with any surgery, there’s also the risk of complications, of infections, which means there is no guarantee you’ll be back up and at ’em when you planned to be. You know that old adage about best laid plans? It’s true.
So, when you go on Dr. Oz’s show and say that “too many women don’t understand the choice,” I think you’re wrong.
I don’t know when you found out that you had the BRCA2 mutation. Maybe it was after you found out that you had breast cancer. If so, maybe you don’t know that when you get your results, the physician typically discusses three ways to move forward:
It’s not like we have a lot of choices when it comes to dealing with our mutation. For me, personally, surveillance was the worst option. Going for a mammogram, then a breast MRI six months later, then another mammogram six months after that seems like torture. Please don’t misconstrue that as being “fearful,” because it’s not. I just hate the idea of living my life in six-month intervals, or of having to find a new team if I ever moved away from where I live right now.
My doctor didn’t recommend chemo-prevention, and the idea of being tied to Tamoxifen for 3-5 years wasn’t appealing either. I’m sure you understand that because you opted to quit chemotherapy.
So I was left with surgery. Of course, I also could’ve chosen to ignore it, but ignoring it would be ignorant. I was given this information on a platter; I was given the chance to really maximize how I live my life. Since my mom was first diagnosed with breast cancer in her thirties, my doctor used that as a benchmark: it would not be unlikely that I, too, would be diagnosed in my thirties. That decade is coming quickly, which is why I made the decision to have my bilateral mastectomy now.
I know for myself that I did not do this to be called “brave,” and I am sure this applies to the choice of many, many other women as well. I did this because I am asserting myself over cancer, I did this because I made an educated choice, I did this after a lot of thoughtful conversation with myself, my mom, and my friends. I don’t need you to think this is brave, I don’t need you to agree with my choice, but I need you to stop spreading misinformation like when you said that stress can turn this gene on or off. I’m no scientist, but I’m sure that isn’t how DNA works at all.
And this is where my problem with you lies. You are a public figure, a celebrity, and you get the gift of having a voice that people listen to just because you are you. When you talk about BRCA and prophylactic surgeries the way you have recently, you are creating a stigma. I reread Angelina’s op-ed before writing this, and in explaining what she’d had done, she did something beautiful: she empowered women to make their own choice, to make the decision that fits their lifestyle. You, perhaps unintentionally, pigeonhole women as being fearful and making impulsive decisions regarding their health. I hope you realize the impact of your words and recognize how many women in the studio audience and at home may now turn a blind eye to something that they can control though risk management because they think of it as being fearful.
I know that your opinions are your own. I get that you think stress and fear can guide you to breast cancer and that you believe nutrition and an absence of stress can ensure that the gene isn’t triggered (although, the whole idea of the mutation is that the gene isn’t doing its job, but that’s neither here nor there), but so much of cancer is still unknown. Spreading misinformation and minimizing the the very difficult decision that many women have made and continue to make daily does not help anyone.
As Angelina said in her op-ed: “Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.”
That doesn’t sound rooted in fear to me.