My Mastectomy Decision

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. 

————————————

Dear Readers:

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.

With gratitude,
Debra

 

Repost: 4 Reasons Why I Don’t Want to Lose My Breasts

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%.

Me, my mother, and my daughter in 2008.

Me, my mother, and my daughter in 2008.

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:

  1. 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?
  2. 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.
  3. 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?
  4. 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.