My Journey After Testing Positive For The BRCA Cancer Gene Mutation

All of these women are incredible fighters and survivors. And I don't think I'm brave like them. I don't believe I could go through it and be as courageous as they are.
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rear view of teenage girl looking through curtain
rear view of teenage girl looking through curtain

When I was a teenager, my mom miraculously survived ovarian cancer (at a time when most women didn't), and my aunt died of it. So once the genetic testing became available, my mom tested positive for the BRCA 1 gene mutation. Women with this gene mutation have a 50-85% risk of developing breast cancer by age 70, and a 40-60% chance of developing ovarian cancer by age 85. Given the family history, I always assumed I had the gene, and have consistently done the preventative screening and imaging as though I did. But I never wanted to take the test, because I felt the test results on paper would do me, personally, more harm and stress than good.

Why? For one, I knew what the doctors would say the best means of prevention would be once it was actually official; they had already been telling me to get my ovaries out since I was 29 because of my family history, even without the test -- and I have always felt the removal of my female organs to be very extreme and something I would not do at that point in time. I am also rather "woo-woo" in my thinking, and believe that our thoughts are powerful and have the ability to create things. My "woo-woo" concern has always been that once I knew for a fact that I had the gene mutation, all the fear that surrounds it from the medical community, media, people in my life, and even myself, would create a sickness in me that otherwise would not have occurred. I also greatly feared that having this knowledge on paper would send me down a tail-spin and into a depression. And it did.

Since getting the results in the early summer, the doctor and oncologist appointments have started, and the consensus, because of my age, is that I am running out of time to do the preventative surgeries. I have been urged, because of my age, to have a bilateral salpingo-oophorectomy (BSO), the surgical removal of both ovaries and both fallopian tubes, within the next year and few months. It is a surgery which "causes sterility and may trigger surgical menopause, causing long-term side effects because of the hormonal disruptions involved." Well, when it's put like that, what girl could say no?

My mom was diagnosed with early stages of breast cancer a few years ago and had a double mastectomy. So, I was urged to have a preventative double mastectomy ASAP. However, since it was ovarian cancer which showed up in my aunt and mom in their 40's, while I will be vigilant in my breast screening, for the time being, I am more concerned with deciding what to do about my ovaries, thank you very much.

Now, my life feels like a countdown, each day closer to losing my female identity, closer to the day of not being able to have my own biological children, closer to the day where my body will be different, and maybe even closer, God forbid, to getting sick because I waited too long to do anything about it.

But here's the thing that is really hard. Instead of feeling compassion for myself, I'm feeling anger at myself for the choices I have made in my life. I'm mad at myself for staying in relationships for too long that I knew weren't right, which then pushed back the timing of me finding the right man to have a family with. And that has brought me to this place -- childless. Yes, I'm now in a great relationship, but it is still relatively new in the grand scheme, and while it is clear we are committed to making a life together, we're not ready to have children yet. One day, we want that. But when that day comes, it may no longer be a biological option for me.

I am facing the prospect of not having biological children, which breaks every single piece of my heart. And I blame myself, because of the choices I have made.

The rabbit hole of anger goes deeper still. I am angry at myself for wasting my talents and passions, and not living my happiest, most authentic life. I have let fear run the show for most of my adult life, keeping me from what I have really wanted in my heart to do. I'm mad at myself for not living the life I have truly wanted, for playing small, and for staying in situations that were "fine" or "safe." I feel like I have failed myself.

Underneath the anger, I am scared. And since I'm being real here, I may as well just put it all out there- a lot of this fear has to do with vanity. I work very hard to be fit and toned, and I'm scared about what the surgeries will do to my body. With my ovaries (and hormones associated with them) gone prematurely, will there be weight gain and will my muscles become saggy, even with my working out?

And, again, since I'm being real, I love my breasts. If I do the preventative double mastectomy, I'm terrified that with my real breasts gone, I won't be sexy or attractive anymore. Even more specifically, I'm worried my partner won't want me that way anymore, and that fear is made even worse by the knowledge that I may suffer from low libido, a very common side effect of this procedure. I am a very sexual person and worry that in taking away my sex drive, the loss of my ovaries prematurely will also take away my sexual identity, a huge part of who I am. And what if it's not just the physical and sexual aspect of me that is taken away? What if the fake hormones I have to take make me depressed and cause crazy mood swings, creating a personality change?

But the biggest thing I'm scared of is that I'm not brave; I have seen my mom, people from elementary school and high school, and many other women go through ovarian and/or breast cancer -- the chemo, the radiation, the surgeries, the hell. And I have seen many BRCA positive women go through the surgeries like champs... All of these women are incredible fighters and survivors. And I don't think I'm brave like them. I don't believe I could go through it and be as courageous as they are.

On top of everything, though, I know how lucky I am to even have this choice, and I do feel gratitude. I can't imagine the amount of women who wish they could go back in time and have the option of doing the preventative surgeries, and I know that those who lost loved ones to these cancers would give anything for them to have had this opportunity. I know I'm lucky.... And I have felt horribly guilty for being so scared and whiney about this, when I am lucky I have a choice that many people didn't.

But then I realized, I can have gratitude and still be in turmoil. One doesn't preclude the other. Having these feelings -- and sharing them -- does not take away from either the gratitude I have or the empowered decision I can make.

Since getting the results, I feel like the crocodile from Peter Pan that has the clock ticking inside of him. I am living with that constant tick-tock inside of me, aware of each one counting down my time; it is there, underneath everything, and it manifests in many different surprising ways, apart from the aforementioned regret and fear -- isolation, social-awkwardness, indecision, being scatter-brained, and general malaise. (Fun times!) And so I can't even begin to tell the people close to those facing these decisions and weighing these options how important their support, love, and patience is while we decide how to proceed. We could use some gentleness, whether or not on the outside we seem like it.

This is only the beginning of my journey, and I have no idea what decisions I'm going to make. I still have genetic counselors to meet, research to do, and others who have gone through this to talk to. But most importantly, I have to start listening to my heart; I haven't been able to hear it amongst the chatter of fear and anger, and I have to get back to it. Because that is what will guide me.

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