The following post was originally published on my blog at The Huffington Post. I am reposting it here for archival purposes. After testing positive for BRCA1 gene mutation,, I decided to write this post – and have subsequently been inundated with stories and personal accounts of hundreds of women just like me.
Because of this, I will be chronicling my medical journey — and ultimate decision about whether or not to opt for an elective mastectomy to remove breasts — on this blog.
Please follow me on my path, and continue to send me your stories via email or in the comments below.
The surgeon and I talked for a long time.
He looked carefully through the surgical notes from my previous breast surgery and at the films from my most recent mammogram. Then, he crossed his arms over his chest, leaned back in his chair and peered at me over the top of his bifocals.
Firmly, but with compassion, he said: “Your breasts have to come off.”
He saw the tears welling up in my eyes, tears that surprised me because after talking with a genetic counselor and five other doctors, I knew this would be his verdict.
He leaned forward, took my hands in his and said: “When is the best time to remove your breasts? The day before you get breast cancer. We know you will develop breast cancer, but since we don’t know exactly when that will happen, we need to take them off now.”
I found out in July that I carry the BRCA 1 gene mutation. My mother also has the mutation and is a 13-year breast cancer survivor. I pray daily that when my daughter’s results come in, they will be negative. I had my ovaries removed three weeks ago, but I’m having a hard time with the decision to remove my breasts.
And so, like thousands of women today, I’m offered a choice: alternate mammograms and MRI’s every six months or undergo an elective mastectomy, which would reduce my risk of developing breast cancer from its current 85% before I turn 60 (in a mere six years) down to about 5%.
Somehow, I had the impression that an elective mastectomy was different, less invasive than one performed when cancer is present. I convinced myself that the surgery would be more like the cosmetic breast reduction I had four years ago.
Well… I was wrong.
I do plan to talk with other surgeons, but the picture this doctor painted for me included drainage tubes and extenders, multiple procedures over an 8-12 week timeframe, and nipple reconstruction or tattooing. The conversation and pictures he showed me — and what I interpreted as his opinion that reconstruction should be a low-priority concern — was not what I had anticipated.
Given the odds, I will probably have the mastectomy within the next six months. But I don’t want to do it and here’s why:
- I’m scared. And I feel so guilty for feeling scared because I know dozens of women — including my mother — who have survived breast cancer thanks to a mastectomy, radiation and/or chemotherapy. I see them now… cancer-free, strong and proud, grateful and resilient… and feel like a jerk that I’m even questioning the gift of having an option they didn’t have. And then I think of the beautiful women I know who lost their war with breast or ovarian cancer, women who would have given anything to have the choice I have and wonder…what the hell is the matter with me?
- I’m frustrated that there aren’t better options for reconstruction and I’m angry that we don’t have a cure yet. If big pharma can come up with drugs that give men erections for up to four hours, why can’t they do better for women? Our mothers, daughters and sisters are battling cancer in record numbers, but the scientific community can’t seem to keep up… or maybe issues like erectile dysfunction are higher on the priority list. People around the world are donating money, running in races, wearing pink ribbons, lighting luminaries and advocating for women’s health issues. The scientific and medical community should lead us in this fight and step up their game… or at the least, come up with better options than what we have now.
- I’m worried about what my husband will think of me. Which is silly, because we’ve been married for nearly 30 years and I know he wants me around for at least another 30. Whether my husband will still find me attractive should be the last thing on my mind. I should feel empowered to have information that could save my life and yet… I’m hung up by vanity and pride. Alan says he wants me to have the surgery… but he wasn’t with me at the surgeon’s office. What if he feels differently when he’s fully informed?
- My breasts are an integral part of my sexuality and my identity as a woman. The thought of losing them is sad because it means that an important chapter of my life is being closed forever. When my breasts first developed, they told me I was becoming a woman. For about 30 years, they reliably signaled each month that it was time for my period. Before I had any other symptoms, my breasts told me that I was pregnant. My breasts nourished my babies. I’m not a beautiful or sexy woman, but my breasts make me feel feminine and attractive. They have done their job well all of my life and I will miss having them… and then here come those guilty feelings again. Every woman who has a mastectomy probably feels this same way… but they also have to cope with life-threatening cancer at the same time.
I tell myself to get a grip because I’m acting like a wuss. I remind myself of what my students who are medically fragile have to endure on a daily basis and realize I’m being selfish.
I think of all the women who didn’t have this heads-up that disaster was looming just around the corner and I know I’m a fool for hesitating for even one second.
I don’t like to gamble and yet, that’s exactly what I’m considering. I’m thinking of rolling the dice and hoping I get lucky… and don’t develop breast cancer. If I’m right, the prize is that I get to keep my breasts and if I’m wrong … well, I lose everything. If I wait until I get breast cancer, there won’t be any choices … only toxic drugs and radiation and desperate attempts to save my life.
How can I be trying to come up with reasons why it would be OK to keep my breasts instead?
So, today, I’m going to let myself cry, because I’m scared and ashamed of myself.
I will cry because even though I thought I knew what women with breast cancer have to endure, I didn’t have a clue.
I will cry because I am in awe of their bravery and resilience.
I will cry because I’m afraid I’m not woman enough to do what they have done.
Today I will cry because I don’t want this gene to be a fault that I unknowingly handed down to my children.
Tomorrow, I will give thanks for this chance to control my own fate. Tomorrow, I will ask my friends who have gone through this for their advice. Tomorrow, I will begin the search for other surgeons who might offer better options. And tomorrow, I will remind myself that I am not defined by my physical appearance or my breasts and that nothing can take away or diminish my womanhood.
If you are considering or have already had an elective mastectomy and are comfortable talking about it, please comment below. Your experiences, your advice and your input could help me and the thousands of women who read this blog.