The Best Prevention is Early Detection: My BRCA2 Story

A few months ago I met with a genetic counselor for the second time.

For those who don’t know, I’m BRCA2 positive, which means based on family history and this gene mutation I have, I will likely get breast and/or ovarian cancer by the age of 60.

Damn. That’s a lot to take in. That’s a lot to process.

Because when I originally found out, I was 22. I remember saying I’ll worry about this when I’m 30. It’s weird because back then, 30 seemed so far away. Like I’d never actually get there. Well, now I am and it’s real. I think that’s the hardest part to deal with. Because sooner rather than later, I have to do to something about it.

Do I undergo preventative surgery and remove my breasts and ovaries —the things that make me feel like a woman. Or, do I risk it and wait? I’ve always said I’d have the surgeries. It’s just time crept up and now it’s here. I have some big decisions to make and I don’t feel ready. Are we ever though? I don’t know.

The Back Story.

For those unfamiliar with this shit, everyone has BRCA1 and BRCA2 genes. Heck, every cell in your body has a pair of genes. Genes are basically a blueprint (genetic code) into why you look the way you do and how stuff works inside you. If you guys took seventh-grade biology, maybe you remember learning about dominant (active) and recessive (passive) traits. Maybe you recall trying to roll the lateral edges of your tongue together. If you can, you inherited a dominant trait.

And if you can’t, you have the recessive one. Genes also determine the color of your eyes, whether you have cute tiny dimples, a widow’s peak as well as how cells in your body grow, divide and die. In this case, though, BRCA genes regulate cellular growth and suppress the development of tumors. Mutations to either gene can result in uncontrolled cell growth —eventually turning into cancer. Experts estimate that 1 in 300 people carry one of these harmful mutations.

However, the prevalence is much higher in some populations. 
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Among Ashkenazi Jews (Jews who originated from Eastern Europe; Poland, Russia, etc), for instance —the type I am, have a 1 in 40 chance of carrying these mutations, according to the Texas Medical Association. 

That said, all genes are hereditary.

You receive a copy from each of your parents, which is also true for BRCA1 and 2. In people without the mutation, nothing really changes. Those genes do their thing within each cell of your body and life goes on. But if you have the mutation I have and you inherit it from both of your parents, your risk of cancer increases that much more. If only one carries it, your chances are cut in half (hopefully that makes sense). At the time, I didn’t know if either my mom or my dad were carries of this mutation.

Basically, before I got tested, I knew I had a 50-50 chance of carrying it. I remember my dad sitting my sister and I down for an important family talk. Because my aunt, his sister had just gone into breast cancer remission for the second time. That right there is how we learned about this BRCA gene in the first place. Because on her journey, she was tested. And when she called my dad with her test results, he learned that his side of the family was, in fact, a carrier for both mutations.

Fuck. Of course, this would happen.

I remember him saying to my sister Michaela and I, that we had to get tested right away. He’s always been a crazy overprotective dad, but this time his concerns held some merit. I remember thinking, she could have it and I wouldn’t, I could have it and she wouldn’t, neither of us could have it or both of us would. We didn’t want to second guess this shit. So I made an appointment that next week at the University of Miami with some big wig genetic counselor.

To Find Out Once and For All.

I remember arriving at this huge office building. The campus there is beautiful. But I didn’t have time to take in the sights. I remember being nervous and a bit confused. I was only 22, after all, and secretly addicted to prescription painkillers. Nothing was what it seemed back then. I was mostly pretending. Still, I didn’t really know what to expect. After I signed in, in the really nice waiting room, I remember hearing my name being called from a lady standing at the front desk.

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I recall her leading me into the second door on the left, and saying, “The doctor will be with you shortly.” I got comfortable. Or, as comfortable as one can be and waited.

A few minutes later, the doctor comes in. Off the bat, she was really nice. And warm. But then —shit got real. We eased into a discussion about why I was here and the possible outcomes of this impending test. What I found interesting is that I didn’t have to give blood. Instead, I was told to spit in a cup. I did my best to fill the container up. And once I did, this male tech came in to collect it. While we waited for the results, she asked me a bunch of questions.

She asked about my ancestry, personal medical history and a breakdown of who and when the members of my family got cancer —starting from my great great grandparents all the way down. She was asking these questions to better pinpoint when/ if I’d get cancer. So I gave her as much information as possible. And with that, she made some type of family tree —a visual diagram to show me what she was trying to explain. A few minutes after that, the tech walks back in.

I remember thinking, damn that was fast.

He immediately handed the genetic counselor I was sitting next too, a piece of paper. That’s when I found out. That’s when I was told, I, in fact, have this gene mutation. In my case, I tested positive for BRCA2 and negative for BRCA1 (there is a difference). And that’s when shit got even real-er (I don’t think that’s a word lol). Because this is when she says, based on family history and the test results now in my hand, I’d probably get breast or ovarian cancer around the age of 60. She said, “This is good news.”

Because she’s met with several other women with a family history of early-onset cancer. Meaning, my 60 was their 30. Still, I was sad. Really sad and even more confused. That’s when I started to cry. She hands me a tissue and tells me this will not affect my life right here, right now. But that I should use this information to be proactive. Meaning, I’d have to get bi-yearly testing (breast MRIs and mammograms) starting at the age of 25. For someone without this mutation, you normally don’t do those type of somethings until your 40.

She emphasized that early detection is the best prevention.
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Because if you catch this shit early enough, you have a better chance of surviving. Early detection, people.

And so, 30 minutes later, the nice genetic counselor hands me a copy of everything we spoke about. I say, “Thank you for everything” —give her a hug and just like that, I leave. I remember calling my sister nearly right away. I wanted to share my news and was a bit curious about hers. Because she got tested a few hours earlier. So we agreed, once I was done, we’d go over everything we both learned together. Honestly, I was scared. I was scared that I had it and she didn’t. Not that I wanted her to have it. It’s just, I’ve always been a bit jealous of Michaela.

I guess I thought this would be the cherry on top of why she’s better than me.

A few minutes later though, I learn she was BRCA2 positive as well. And just like me, negative for BRCA1. I think we both ugly cried a bit longer as I made my way into the car. I remember her saying to come over immediately. So I drive straight to her condo in East Boca Raton. After arriving and parking, I get in the elevator, walk down the hall and use the key I had when I lived there to let myself in. My dad was already sitting on the couch. He and my sister were watching some golf tournament on the main TV in the family room.

They wave me over. So I sit down on the couch, in-between the two of them and make myself at home. That’s when my dad grabs the remote and turns the TV off. From there, Michaela starts talking about her appointment and then, me about mine. He was sad. We all were. How could we not be? This is heavy shit. We end up discussing everything we learned for nearly an hour. We looked stuff up we didn’t understand —trying to get as much information as possible. Trying to wrap our heads around what are options are and what the future holds.

It was overwhelming.

A Few Years Later

If you recall, at the time all this went down, I was secretly addicted to opioids. So eventually that shit catches up with me. Timeline wise, a few months later, I end up in detox and then rehab for the very first time. Over the next three years, I’d be in and out of treatment programs. Eventually, though, I get it together. Because today, I’m six years clean. But that’s beside the point —at least in this case. Because another few years go by. I’m getting the bi-yearly exams and doing my best not to go there.

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Everything looked good though. But my head. Well, it would go to some really dark places. Because no one wants to be told they have the cancer gene.

So anytime I’d start to spiral, I’d try to keep busy with some random mindless task. Meanwhile, my strong AF sister creates a beautiful family. She was already married back then, to Reid, my awesome brother-in-law whom I love so much. The thing is, at that point, she was done having kids. She had three and was happy with the life she created. That’s when she decided it was time to do something about this BRCA shit. So that’s when she got a preventive double mastectomy.

For those who don’t know, a mastectomy is a way of treating breast cancer by removing the entire breast and all corresponding breast tissue through surgery. There are different reasons women choose to get this procedure done. There are also different types of mastectomies, but for now, this is what you need to know. In the case of women like my sister and I, who have a high risk of getting cancer because of the BRCA1 and 2 mutations, a considerable way to decrease that probability is to undergo a preventative double mastectomy —the removal of both breasts.

Because you can’t get cancer in an area you no longer have (if that makes sense).

A lot of people have a lot to say about this. It’s like why are you going to mutilate your body for something that may or may not happen. On the contrary, though, these mutations give my sister and I a 92 percent chance of getting breast and ovarian cancer. That’s nearly 100 percent. And you’re telling me that this preventative surgery is unwarranted? I beg to differ. Now, I’m not saying this surgery isn’t complicated or without risk. Because it is. There is.

It’s more complex than we even know. My sister said it was life-altering. I mean, you’re literally getting your chest removed. It looks weird and feels even weirder. Luckily, plastic surgery has come such a long way. You have the option, which my sister took to get them reconstructed through reconstruction surgery. This means, after they remove your breasts, you get new ones. But not without a cost. Because it happens in phases. And during those phases, you have tubes and drains and some really ugly shit attached to you. You can’t move, workout or have sex for like a year.

And during that year, it will hurt.
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My sister said the worst hurt you can possibly feel. Not to mention the toll it takes on you mentally.

I mean, right now I look down. I see two beautiful tear drop like boobs. But back then for her, they were weird and ugly. She basically lived at the doctor’s office. Because there’s a lot of moving parts that go into recovering. Except present day, it’s been years since that shit. And today, they’re beautiful. She said it was the best decision she ever made. Yes, her chance of getting cancer is still there. But it’s 2 percent instead of 92. And yes, it took some time to get there.

Which is what I’m most afraid of.

I’m afraid my surgery won’t go as well as hers. I’m afraid I’ll feel like I’m less than a woman. Because I was a late bloomer. I didn’t get boobs until my senior year of high school. I remember praying for them every single day before then. So they mean a lot to me. Not to mention what they mean to my significant other. If I can be honest, I’m most afraid that my boyfriend won’t think I’m sexy. Hell, I’m afraid I won’t think I’m sexy. Because I like feeling sexy. And I like my boyfriend to think my sexy.

Because as amazing, as he is, he’s still a man.

And in my opinion, men are visual creatures. They go off what they physically see. And for a while, as my sister said, you don’t want to visualize these things. So yeah, that scares the shit out of me. Not including the fact that it’s major surgery and I hate pain. Since I was addicted to painkillers, how will I recover without them? How would I recover with them? I don’t know. So yeah, that’s a big concern for me as well as my family. Because my sister said she needed those pills just to be able to breathe.

Besides the top surgery though, there’s also ovarian cancer risks. Meaning, I also have to consider getting a hysterectomy —the removal of a woman’s cervix, ovaries, uterus, fallopian tubes, and other surrounding structures. That also means I’d go into early onset menopause. Basically, the shit that keeps me young is no longer there to do its job. Because after the procedure, which my sister got a few years ago, a woman’s body goes through something known as surgical menopause. My sister experienced hot flashes and other menopause-like symptoms.

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As if she really was going through “the change.” Because in reality, that’s exactly what was happening. What will happen if/ when I choose to get it done.

Because the shit being removed controls and regulates hormone secretion. So after a hysterectomy, you no longer have menstrual periods. AND you can’t get pregnant. For my sister, she had her kids. She’s done. She has three beautiful ones. But for me, I have none. So without a doubt, that was the next and final thing SHE had to do. But for me, I don’t know. I will say, if you get the bottom surgery before the top, it actually decreases your chances of breast cancer by 50 percent.

But like I just established, it also means you can no longer have kids.

For me, I’ve always had this inclination I won’t be able too. No scientific proof of that —just intuition. Since I’m now 30 and my window to have kids is closing sooner than later, I wanted to find out once and for all which one was true. So I bought this at-home fertility test from a company called Everly Well. And damn. It was really cool. Basically, they have a bunch of at-home lab-tests —complete with instructions on what to do, the tools to do it and then a pre-paid shipping box to send your collection to their lab —where they test it and then email you a full report on what they found.

I originally used them several months ago when I found out I have a gluten and dairy sensitivity. So when I recently saw they now offer fertility testing, I just had to jump on the option. Turns out, my inclination was right. I was spot on. Because my chance of being able to have kids is pretty much non-existent. Like the fertility hormones most women have, I don’t. For reference, to have kids you want your number to be in the 90s. Mine is 2.  That said, I’m currently meditating on the fact that I may get the bottom before the top. She actually said the bottom one was easier than the top.

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But once again, that’s not without a cost.

Because I’m only 30. I don’t want to go through menopause any earlier than I have too. And even though I have a really low fertility count, that doesn’t mean I can’t try. But if I get the bottom surgery, that’s exactly what it means. So at this point, I’m still searching for my answer. I know what my sister did. But I need to make my own decision on my own time, which is where I’m currently at —figuratively and physically. Unfortunately, that means this article doesn’t get a happy ending.

I can’t offer a solution to something I don’t know for sure myself.

Like I said in the beginning, I always thought I’d have the surgeries. But now it’s real. It’s here and it’s hard and it hurts. But that’s the thing. Life happens whether we want it too or not. So I’m doing my best to enjoy every second of it while I search for the answer. I’m also trying not to compare my middle to my sister’s end. And for you, right here right now, don’t compare your life to anyone else either. I mean, there’s no comparison between the sun and the moon. They both shine when it’s their time.

So I think I’ll know when it’s mine.

xoxo,

macey bee

sources:

https://www.everlywell.com/

https://www.womenshealth.gov/a-z-topics/hysterectomy

https://www.mdanderson.org/publications/cancerwise/undergoing-genetic-counseling-and-testing-for-a-brca-mutation.h00-158990601.html

https://mysupport360.com/blog/the-difference-between-brca1-and-brca2/

https://ww5.komen.org/BreastCancer/BRCA1andBRCA2.html

https://www.latimes.com/science/sciencenow/la-sci-sn-brca1-brca2-mutations-cancer-risk-not-same-20150408-story.html

https://www.cancer.org/cancer/breast-cancer/treatment/surgery-for-breast-cancer/mastectomy.html

https://www.breastcancer.org/treatment/surgery/mastectomy/what_is

 

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