At 46, my mom felt a lump in her breast, which turned out to be breast cancer. I knew breast cancer at that age was kind of young, and her doctors asked about family history, but she had been adopted as a child, so we didn't know it. She had a lumpectomy, chemo and radiation, and that was that.
A few years later a letter arrived from her biological cousin saying she had tested positive for a mutation of the BRCA2 gene (which causes hereditary cancer), and suggesting our family might want to get tested too. My mom and my sister concluded pretty quickly they weren't interested in knowing whether they had it or not, which ended the discussion. The subject changed, and it didn't come up again. Only I couldn't stop thinking about it. Not all the time- a week or three would pass between when it would cross my mind, but eventually my curiosity won out, and I started Googling. The statistics vary, but lifetime risk of developing breast cancer for a woman with a BRCA mutation is as high as 87%, and her risk of developing ovarian cancer is as high as 42%. (Comparatively, the lifetime risk for the average woman of developing breast cancer is about 12%, and ovarian cancer around 1.5%.)
After seeing the statistics and learning more about just how high my cancer risk may be, I decided I definitely wanted to know whether I carried this gene mutation. You guys can guess where this is headed, right?
I can't say I was surprised when my test came back positive. I mean, my mother had already had breast cancer at a young age, my sister had recently passed away from leukemia- something had to be going on here, right?
So I listened while the genetic counselor discussed my options for preventing breast cancer:
-increased surveillance. Breast exams every six months, and alternating mammograms and breast MRI's every six months. Hope that if/when I get breast cancer, they catch it early. Discuss treatment options at that point, which could include chemo, radiation, and mastectomies.
-chemoprevention. Taking drugs that some studies have shown may decrease the risk of developing breast cancer in high risk women by as much as 50%. Potential side effects include blots clots and uterine cancer.
-prophylactic mastectomies. Remove my healthy breasts before they develop cancer. Decreases risk by about 95%.
Looking at my options, it was clear the ones that reduced my risk the most are also the most drastic, invasive, and permanent. I would like to say the decision was easy for me. In some ways it was; I had watched too many people I love battle cancer. Some had won their battle, and some had not. It's excruciating to sit helplessly by watching someone you love fight for their life. I had sat with my mother, and my grandmother, and my sister while they went through chemo; as they lost their hair, and their energy, and their appetite (but never their sense of humor). My grandmother beat her breast cancer for 15 years before it came back in her lungs, and her bones, and despite a courageous effort on her part, this time the cancer won. She died the day before my high school graduation.
My sister battled her leukemia for two years. As a result of her treatments she gained weight, developed diabetes, her bones degenerated, her hips cracked, and she lost the ability to walk. Still, it never crossed her mind to stop fighting, no matter what side effects she had to endure. She simply refused to leave her children without a mother. She made it through their birthdays- her son's 5th, her daughter's 8th- which we celebrated at her bedside at the hospital. She died a week later. She was 32.
If there is any chance that I could spare the people that I love from going through that, that was what I wanted. When presented with the same information and options, I know that other people may choose differently. The thing is, we are all living realities hewn from our past experiences, and any new information we receive is processed via those filters. If those personal experiences with cancer hadn't left such an impact on my worldview, maybe my choice would have been different. I can speculate, but I'll never know for sure, because I can no longer look at cancer -and cancer risk- with clinical objectivity. My experiences with cancer have been that it is destructive, disruptive, unfair, inhumane, and devastating. Nothing about it leaves me feeling warm and fuzzy. Cancer isn't like the tooth fairy, giving you something good in exchange for what it takes. Instead it comes in to your home, kicks your puppy, uses your toothbrush to scrub the toilet, and pees in your coffeepot. So when I heard cancer, my gut reaction was to do whatever it took to avoid it.
I came home from that meeting and made an appointment with a breast surgeon to discuss having my breasts removed. And then I made appointments with a few plastic surgeons to discuss my reconstruction options. I chose the double mastectomy, with immediate breast reconstruction using silicone implants. On Christmas Eve, I got a letter with my surgery date. And then the reality of what I was doing set in. And I cried. And I grieved. And I wondered if I would ever be the same. I alternated between a zen-like certainty that I was doing the right thing, to a borderline hysterical fear that by removing my lady parts I would suddenly feel like less of a woman. That I would somehow be less of a woman. That I would wake up in the recovery room in an instant, full-blown identity crisis.
Breasts are personal. They nourish babies, they attract potential partners, they are a cultural fixation. They are often intricately tied into our self esteem. We wish they were larger, smaller, rounder, perkier, fuller. That our nipples were larger, smaller, rounder, darker, lighter. We buy lingerie to lift, separate, flaunt, minimize. As girls, they are a visible, physical marker of crossing the threshold from adolescence to womanhood.
That was 9 years ago. Now that I'm on the other side, I can say that it is different. Not asexual, end-of-the-world different, but it's definitely been an adjustment.
Two years ago, I started having some pain. It persisted for months, and then one day I felt a lump. I didn’t have health insurance at the time. It was months before I could see the doctor.
The good news was, it wasn’t cancer. The bad news was, my implants had ruptured. I wanted them out.
Last year, I had surgery to have them removed, and this time the surgeon built new breasts using tissue from my belly. Or tried to...there were some complications. Because of that I’ve had 8 surgeries since last year, and honestly, my chest is still a hot mess. But I’m waving the white flag, and giving my body a break.
Even with my breasts and ovaries removed, I have a lifetime of increased surveillance for skin cancer, and pancreatic cancer, and some obscure cancer of the eye. All of that being said- and certainly if given the choice I would never have chosen to have the gene mutation- I am extremely thankful to be able to know that I do have it and be able to make proactive decisions to reduce my risk, than to have been blind-sided with a cancer diagnosis in the future.
Some days, all I can do is take one more breath. Some days I’m so tired the future looks impossible. The weight of it crushes my chest and chokes my breath. On those days I’ve learned to stop looking far and focus on what’s right ahead. Celebrating it all? I’m not there yet. But I’m closer to embracing the asymmetry and imperfection that is my body, my life, this journey.
I started a photography project called Beauty and the Breast to help show women who have had or are facing mastectomy that there is life after this surgery. If you, or someone you know would be interested in participating, please get in touch with me.