I think it’s time to deal with the big bad question:

Why? Why would I have a mastectomy, as a perfectly healthy 21-year-old?

I’ve been avoiding this post for a while–not because I didn’t want to answer the question, but because I didn’t know where it would belong. It seems like something I should have written about a long time ago, before my surgery. And I did write about it, for myself, to justify the decision. But now I want to “go public” with my thought process, because people are right: removing all of my breast tissue at a young age is absolutely ludicrous.

This time last year I was driving home from work, anxiously awaiting the debauchery that would be the following evening: my 21st birthday. At that moment, I was just a normal college student. I was so excited to finally be free of my crappy fake ID, but before that magical first legal drink, I would have to make sure my camera was charged, my hair was straight, and my clutch was packed with the necessary lip glosses and eyeliners.

Celebrating my 21st birthday last April. From left to right: Marissa, Danielle, Rachel, Katy.

Six months later, everything was different. I felt nothing like that girl who was excited to go out to bars with her sorority sisters to celebrate another year. My BRCA test results were in, and it seemed that I would never be the same again.

I was suddenly resentful of my body. I felt so betrayed! My relationship with my body had never been perfect; there were certainly a wonky few years during high school. But since starting college, I’d finally become comfortable being me. And then, when things seemed to be going great in life, my body just threw me under the bus. “Oh hey! You’re gonna get cancer!” No, I guess it wasn’t my body–it was my DNA. That’s what made it even worse, at least at the time: the very essence of my being was flawed.

Oh no…not an awkward photo from high school!

No one could see that I was broken, but I knew it. I just didn’t know when it (cancer) was going to strike. My breasts were–you guessed it–ticking time bombs (oh so that’s where the name comes from!) Every time I caught a glimpse of them in the mirror while changing, I shuddered. I hated them. I didn’t trust them. What if there was a cancerous cell lurking in them already?

The BRCA test results felt like a death sentence. But maybe that’s the wrong way to describe it…I never thought I was going to die…but I never thought I was going to live, either–at least not happily and cancer-free. It was a death sentence for my normal, relatively simple life. It was a sentence for cancer. I read up on the numbers, and I knew how BRCA had played out in my own life: my mom had been diagnosed with breast cancer twice. The fact that I, too, was BRCA positive meant that I was going to get cancer. There wasn’t hope that it would skip me or that I could diet and exercise my way out of it. No. If I lived long enough and had enough breast tissue, I was going to get breast cancer.

These two thoughts–resentment toward my body and belief that I would eventually have cancer–were what drove me to my decision to have a prophylactic mastectomy.

I really hate being depressed. I hate hating myself. I wanted, so badly, to get back on track with my self-esteem and self-image. You can only truly love someone if you love yourself first, and I really hated myself last October when I found out about my BRCA mutation. Imagine how poor Bryce felt?

It’s true that I could have waited one year, five years, ten years–any period of time, perhaps–before having a mastectomy. And I think that if I had waited a few years, I still would have been doing it by choice, not by necessity. But I know that I would have felt so much self-loathing during that time. I was not prepared for those feelings. The drama of my teenage insecurities was hard enough; I did not want to repeat any of that. The sooner I got on with my mastectomy, the sooner I would have reconstruction. The sooner I would have reconstruction, the sooner I would love my breasts–and myself–again.

A mastectomy and reconstruction would give back what the BRCA mutation had taken: my self-esteem. But it would also give me peace of mind. Many women who are at high-risk for breast cancer opt for the surveillance option instead of surgery. They are diligent about their mammograms, MRIs, and breast exams and join special hospital programs for high-risk women.

This was certainly a choice I could have made, but it was too passive. Yes, I could screen the heck out of my breasts, but that wouldn’t stop a tumor from forming. And let me tell you: I’m a worrier. If something hurts (my eyes, my ears, the space between my toes), I go to the webMD Symptom Checker and diagnose myself (and it’s always terminal). Imagine me at a yearly MRI or mammogram? I just know I would be freaked out for days waiting for the results.

Remember when I thought I had esophagus cancer? Thanks, webMD Symptom Checker.

And the way I saw it–again, based on the numbers–was that eventually one of those MRIs or mammograms would come back with a spot. I would get the spot biopsied, and then a doctor would tell me that I have cancer. The doctor, knowing that I have a BRCA mutation, would then strongly suggest a double mastectomy, followed by chemotherapy and maybe radiation.

I would not get to pick when this happened. Cancer would not care if I had a career and children to think of; it would just strike. I would have to halt my life for surgery and a very difficult treatment; I would have to explain to my family what was wrong with me. My mom didn’t get to pick when she was diagnosed with breast cancer. It just happened to her, and at a really sucky time.

When I found out that I had a BRCA mutation, I was given a choice–the choice my mother never had. I could choose when my life would be inconvenienced. I could decide if I wanted it to be because of cancer, or because of me. I decided to stop my life for a few weeks because of me–because of a decision I made myself. If I had decided against a prophylactic mastectomy, I would have to have one at some point, anyway…and it wouldn’t be prophylactic anymore. It would be because I had breast cancer.

My brother Michael put it best in an email to me a few days before my surgery: “Doing this [a mastectomy], or not doing this, are each big decisions.  One choice is potentially fatal, and one is just fucked up.  You chose fucked up, which is clearly the right choice.”

He’s right. It is “fucked up.” It’s ridiculous. It’s upsetting. I was distraught for weeks before my mastectomy, and sometimes now, even after, I get angry and sad and insecure. But it was the right choice. I didn’t cause the stop codon that screwed up my BRCA2 gene. Nothing I ate, drank, said, watched or smelled affected it in any way; it just happened. I couldn’t control it. But now I am in control of my body and health again, and I have my prophylactic mastectomy to thank for that.

I know blogs are supposed to be concise…and that certainly wasn’t. But I hope it made sense. I hope that at least one person out there understands my decision a bit more…I hope it doesn’t seem so crazy and extreme.

I want YOU to get tested for the BRCA mutation in 20 years so you can take control of your health again, future self!

Tomorrow’s my 22nd birthday, and I’ve given myself the gift of life! So cheesy, and so true.


Twelve years ago

Twelve years ago, I was a carefree nine-year-old who had just moved from Boston to San Francisco. School was going well, my parents promised to buy me a dog for Christmas, and I’d joined a soccer team.

Rachel and Madeline, early 2000

My head was in the clouds. I don’t remember much about my mom having cancer; I just knew she was sick. It didn’t mean very much to me.

In October of 1999, while getting dressed for work in the morning, my mom found a lump in her left breast. An October 14th mammogram and ultrasound revealed a “9 x 11 mm mass with ill-defined, indistinct margins.” An October 22nd biopsy confirmed it as a “grade 2 infiltrating ductal carcinoma.”

Rachel and Mom, Halloween 1999. Mom made me that Sgt. Pepper costume!

My mom was given two options: a mastectomy or a lumpectomy (at the time, doctors didn’t know she had a BRCA mutation.) Either option would require chemotherapy and radiation.

She opted for the lumpectomy. Her first round of chemotherapy was on January 17th, 2000. By December of 2000, her mammograms were clear.

Where was I in all of this? I’m not really sure. I have no recollection of the moment she told me she was sick. Apparently she sat me down and explained, as best she could to someone who would prefer to ride a bike than to talk about medical problems, that she was ill but she was getting treatment and would be okay in the end. After she was done talking, I asked for a cup of tea.

Either I absorbed the news so well that I was going to reflect on it with a nice cup of Earl Grey, or I had no idea what to do with the information and was looking to change the subject.

One day we went shopping for wigs. It was a lot of fun, but boy, was it overwhelming. There was so many styles. At the time, my mom’s hair was a curly ash brown, styled in a short, almost cropped cut. But the wig she picked wasn’t like her hair at all: it was auburn, a shoulder-length bob. And she never actually wore it–why did we pick it?

“Why?” Those were the type of questions I remember.

“Why is your mom bald?” That was the worst one, my most vivid memory of my mom’s breast cancer. I was in my fourth grade class giving a presentation about animal abuse. I’d invited a local newspaper columnist who wrote about animals to speak to the class. My parents were so proud of me; they came to watch my presentation and to meet the columnist.

Mom wore a green, flowery dress that touched the floor and a purple knit hat. It was obvious that she had no hair: even the shortest of cuts would have had at least some strands poking out the back. The hat was a way of protecting the rest of the world from cancer, of shielding the problem and letting everyone ignore it.

So when a boy named Michael asked why my mom was bald, I was taken aback. Didn’t he know he wasn’t supposed to ask that kind of question? Had his parents not taught him any manners? What was his deal?!

I don’t remember how I answered him. I’m sure I said something snarky.

That incident was honestly the most traumatic breast cancer-related moment of my childhood. By the time fifth grade started, breast cancer seemed like a thing of the past. Mom was done with chemo and radiation, her hair was growing back, life had resumed as normal. Breast cancer, it seemed, had only been a minor hiccup.