This post is the second in what will be a series, documenting my experiences with the BRCA gene mutations and pending medical decisions. Thank you for following me on this journey, and please continue to send me your stories via email or in the comments below.
Two weeks ago, I wrote a post about my conflicting emotions about whether I should undergo a preventative mastectomy and The Huffington Post published it — you can read that post here. Hundreds of people from all over the world have read it, hundreds have sent me comments and emails and I’ve been introduced to a new “sisterhood” of women. Turns out, there’s a word for people like me who are BRCA positive: We are “previvors.” I like the sound of that word: surviving something by preventing it from happening. Your support has been overwhelming and I will be forever grateful to the women — and men —who have reached out to offer their advice and have shared their experiences.
One of the comments I received was from a woman who said, “I had a preventative double mastectomy 8 months ago and I still second-guess myself. Yes, I know I had an 85% chance of developing breast cancer but that means I also had a 15% chance of not developing it. I’m glad I had the surgery and like my new breasts but I guess I will always wonder … did I do the right thing? There something about having a choice that makes this more hard.”
I agree with her. But that’s the thing about being given a choice … eventually, you have to choose.
It’s been a busy two weeks. I’ve had consultations with general and plastic surgeons locally and out of town. I’ve had a breast MRI and discussed the results with my gynecologist. I even got to meet with the President of the Hudson-Alpha Institute for Biotechnology, where a team of geneticists are working with Dr. Mary-Claire King and others to further study genetic mutations and cancer. Stay tuned for details on what I’ve learned from them, which I will write about in a separate post!
Bolstered by your comments and encouragement, I sought second and third opinions. I have an existing chronic health condition that requires regular infusions of a drug that suppresses the immune system, an important thing to factor in as I consider any possible surgery. In my hometown, I was told that my only option was to have three surgeries and that nipple-sparing was not an option. That didn’t sound right to me. And then two different doctors said things that I found objectionable, to say the least.
One doctor said that there was no reason to think that losing my breasts will have any impact on my intimate relationship with my husband, to which I replied, “The ‘girls’ have always been very involved in my intimate life with my husband, thank you very much. If we were talking about your penis, would you say a thing like that?”
And a local plastic surgeon — yes, a plastic surgeon (who probably makes piles of money every year performing cosmetic breast surgeries) — said, “Why would you be concerned with saving your nipples? If you are already going to mutilate yourself, why would you run the risk of leaving a nipple that might become necrotic?”
I think I’ll pass on a plastic surgeon who says breast reconstruction is mutilating myself.
Eighty miles south (but 25 years ahead of us) in Birmingham, Alabama is a highly regarded cancer center. I met with the surgical team who performed preventative mastectomies on two of my cousins who are also BRCA positive. Both of my cousins had nipple-sparing breast removal and reconstruction in one surgery and both of them are thrilled with the result. The breast surgeon told me that she wants to save my life by preventing breast cancer but she also wants me to be happy with the outcome. She was well versed in genetic medicine, explained the options in layman’s terms I could understand and did not minimize my fears or concerns. I have decided that she will be my surgeon and am waiting for my first consultation with the plastic surgeon who works in collaboration with her. Pre-op orders are starting to come in, I will travel to Birmingham several times over the next few weeks and we are shooting for a mid-February surgery date. I realize that it is a gift to plan this operation, as opposed to the rush to surgery required when cancer is present.
So, yes, I’m going to lose my breasts and no, I’m still not too happy about it.
I wonder if I would feel differently if I had to lose another body part … would it matter as much to me if it were an arm instead of my breasts? Because it does matter to me, a lot, even though I’ve made the decision and will not change my mind. And no matter how hard I try, I can’t seem to wrap my head around the notion that they will be gone. Women have told me that the entire process — the decision, the surgery, the recovery — takes a physical and emotional toll even greater than they anticipated. Which is exactly what I’m afraid of. Surely by the time of the surgery, I will be ready. I’ve come a long way in just two weeks so in another couple of weeks, maybe I’ll be a “rock star” level previvor. At some point, I imagine I will stop asking questions because there does come a time (for me) when too much information becomes overwhelming.
In just two weeks, I’ve come to terms with understanding that my genes long ago predetermined the fate of my breasts. The BRCA mutation is just one of the many flaws that were with me from the beginning, mapped out on my genome somewhere near the gene that gave me Crohn’s disease, maybe close to the gene that prevents me from being able to understand simple math and next to the one that makes me so impatient and impulsive.
But still, the first thing I think every morning is, “In about 8 weeks, I will be having major surgery to remove and reconstruct my breasts.”
I’m just one woman among thousands who is making this decision, a very personal one that is different for each woman. Writing about this process is helping me cope with it. Connecting with women who have been where I am is helping me understand it. Talking with my husband is helping me accept it.
Knowing I am not alone is making all the difference.