I used to get so frustrated when the few news articles that talked about the BRCA mutations focused primarily on healthy women choosing to get prophylactic double mastectomies. Willingly, these brave (crazy?) women in their 40s, 30s and yes, even 20s were choosing to remove their breasts; not because they had been diagnosed with breast cancer, but because of their 80%+ chance of getting it thanks to a gene mutation.

I used to get so frustrated, because I felt they were focusing more on women “disfiguring” themselves when they didn’t actually have and may never even get breast cancer and ignoring the fact that they also had a greatly increased ovarian cancer risk. Why was this the case?

Was it because you can’t see our non-sexualized ovaries? Or was it because they are our baby makers and of course, removing them meant never giving birth to a biological child and, um… “every woman on earth” should want to experience that?

I used to get so frustrated that if those articles or tv features even mentioned those same women also deciding to remove their ovaries, it was usually but a footnote. An afterthought. Not the real story, which was women were cutting off their breasts!! It’s mass hysteria I tell ya!

But of course it’s not hysteria at all. In fact, it could be the exact opposite. Maybe one of the most sane things a woman can do when faced with odds you’d never want to play in Vegas. Never mind that many of said crazy women were discovered to actually have early-stage breast cancer when they did have their breast tissue tested during their mastectomies. Thankfully, I was not one of them.

I used to get so frustrated that these women had to make such drastic decisions for their health. I truly felt for them, for I also knew I would be one of them one day. 

At age 31, just when I finally felt like my life was starting to hit it’s stride—Bill and I were planning our wedding and seriously thinking about changing careers and photographing weddings professionally—I had to watch helplessly as my Mom fought Stage 4 ovarian cancer. She suffered through rounds & rounds of chemo, losing her beautiful bottle-blond hair, completely losing her appetite for her favorite foods and experiencing extreme fatigue just walking to the bathroom, yet not wanting to fall asleep for fear she may not awake again. She eventually would vomit green bile as her liver and other organs began to fail and experience spiritual distress while floating in and out of semiconsciousness. Ultimately, six days before Bill and I were to say I Do on September 16, 2001 (what would have been my parents’ 39th wedding anniversary-Dad passed away in 1991) her body gave out and she passed away from ovarian cancer at 62. 

Several years later and after I had tested positive for the gene mutation known as BRCA2, my oncologist who specialized in hereditary cancers strongly advised me that she’d feel much more comfortable for me to have my ovaries removed by age 40 or “whenever I stopped needing them”. (I gave her until I was 42 after Bill and I decided we wouldn’t be pursuing further having children. We could no longer afford it financially and more importantly, emotionally.) She was all for me getting a mastectomy, as well, but because breast cancer is often much easier to detect, wasn’t as concerned that I was still carrying those ticking time bombs around on my chest. 

I used to get so frustrated because it’s impossible to describe what it feels like to make such life changing decisions for your health when you’re not sick. And may never actually get cancer.

But, women can and do, unfortunately, get ovarian cancer at any age and often in hereditary cases, not only can it show up much earlier, it’s often stronger if it does. Same with hereditary breast cancer. So why then do they recommend we wait at all? They generally don’t suggest we wait until a certain age to have a mastectomy. Oh, wait, yes they do. Whenever you’re done breast feeding. 

Why do so many doctors suggest putting off potentially life saving surgeries? So that you can be a mom? Is being a parent so important that you should choose parenthood over your life? What if putting off those surgeries then threaten your very existence to be around for any children you may have?

I wanted to yell at all those (often male) journalists that ovarian cancer was a silent killer. That it’s so tricky to discover until it’s more advanced, that for many people, it’s often a death sentence. Now don’t get me wrong, I’d never wish breast cancer on anyone either—I just wanted these news stories and articles to be more even-sided (and maybe be written by women.) To remind people that both can kill you and especially if you have a gene mutation, you should be getting screened for both cancers every 6 months until you make a decision on what, if any, preventative surgeries you want to have.

I used to get so frustrated because while an oophorectomy can be a much easier surgery, dealing with the significant physical changes that accompany that surgery was and continues to be incredibly difficult. If you’re a lady and curious, buy me a cocktail sometime and I can certainly elaborate. I wish I’d had someone around to do that for me. No Mom, no aunt, no older sister, not even a friend who was going through the life change. At least not any that were openly talking about it.

Because yes, removing your ovaries means instant menopause. Instant. I awoke from surgery in 2011 and along with some choice pain meds, immediately began taking hormones. This in itself is another difficult and ironic decision if you still have your natural breasts because hormone therapy can increase your chances of getting breast cancer. Even if you don’t have the mutated gene. In addition, medically-induced menopause can lead to greater health issues such as increased heart risk, increased chance of Alzheimer’s and decreased bone density and osteoporosis, all at an earlier age than if you go through natural menopause. I actually have osteo’s precursor, ostopenia, so I’m trying to eat well the majority of the time, get extra calcium and do weight-bearing exercise to increase my chances of it not advancing until I’m much, much older, if at all.

But removing your breasts? They were primarily at their core, just erogenous zones, right? NBD.

Well, that’s what I thought before my mastectomy & subsequent reconstruction. Not only is the initial surgery to remove all your breast tissue much, much more difficult and recovery quite painful, but it’s so much harder emotionally to lose such a visible part of yourself. I won’t go into all the reasons why again here, though since they’re practically the reason this journal even exists! (It is really amazing though to see just how far I’ve come from how I was feeling emotionally a few weeks after the removal of my breasts.)

I do find it slightly ironic that at mid-life, my life truly feels divided in half: before mastectomy and after.

What I’ve come to realize? Even though part of me believed that I would never get breast cancer, no matter my chances, I wanted to take control of my destiny in any way I could. In my brain, I certainly know that having the BRCA gene and having cancer are most definitely not the same thing. But, my body, my spirit, my soul, I don’t think knew there was a difference at all. I may not have had cancer, but I felt as though I already did.

Suffice it to say, I can now better understand why so many of those articles focused on breasts. Not only is a double mastectomy a more serious and difficult surgery/recovery, but because they’re not hidden away, you see and feel reminders of what you’ve lost. Every. Single. Day.

Bottom line: both surgeries are life-altering. I’m still me, but I also don’t feel like me. I think Annie 2.0 is in beta testing. Or maybe, she’s already here.

I used to get so frustrated. Now? Now I get it.

Mom and I a few short months before she passed away.

Photo by Michael Woodward