THE BLOG
04/14/2016 04:03 pm ET Updated Apr 15, 2017

My Ovaries Are Off the Table

Tuan Tran via Getty Images

The girls at Flushing High School are up out of their seats and giggling. I remind them, "Boys are stupid and they will never be able to tell if your boobs are fake. Your body is no one else's business." We angle our heads to take our third selfie.

I wish I could take my own advice.

I was diagnosed with the BRCA1 genetic mutation at 25 years old and immediately panicked. Being positive for BRCA1 means I have a much higher chance of developing breast and ovarian cancers in my lifetime. This knowledge made me go into shock, then to the nearest bar. The diagnosis alone felt like a death sentence.

After years of therapy, family discussions, and getting sober, I chose to have a preventative double mastectomy -- the same procedure made famous by Angelina Jolie. Being a comedian and writer, my experience of living with BRCA1 would inevitably be included in my work. So I teamed up with Glamour.com to co-create the docuseries "Screw You Cancer," and recorded my journey. Even then, there wasn't a ton of social awareness about the procedure, and I felt very alone.

Since then, I have been able to help other women who are feeling alone by sharing my experience as a public speaker, traveling to schools and health centers, and speaking to women of all ages. A large portion of my keynote focuses on encouraging women to be their own biggest health advocate. Whether it's getting a second opinion from a doctor or resisting pressures placed on them by family members, I encourage women to be empowered in their decision-making and stand firm in their convictions.

Last week I wasn't able to do the same.

I was attending a friend-of-a-friend's-cousin's dinner party and the discussion of my work with BRCA awareness came up. I was happy to share and answer whatever personal question was asked; I am an open book when it comes to my breasts. Ovarian cancer, however, is another story. I never enjoy when the topic comes up because, as someone with BRCA1, my risk of being diagnosed with ovarian cancer is much higher than the average woman. So, I gave the same polite response I always do: "I am not sure yet what my decision will be with my ovaries and I'm waiting to make up my mind after I have children." I am horrible at setting boundaries but this is one I'm proud of.

A woman I had been speaking to for less than 15 minutes quickly announced to the group, "Well you have to get your ovaries out at 35." She, like most healthcare professionals, recommended an oophorectomy or a salpingo-oophorectomy, the latter removing the ovaries and fallopian tubes to drastically cut risks of ovarian cancer. I have been aware of this procedure for some time and all of the benefits and risks that accompany it.

I respectfully responded with, "I'm not yet sure what I want to do and I'm still weighing my options." Unfortunately, that answer wasn't good enough. She then listed everyone she knew who died from ovarian cancer, and her friends who are having their ovaries removed. She questioned me about my future family planning decisions and gave further directions as to what I should do with my body. I was being attacked and challenged and I wanted to run and hide.

I already feel pressure to have children, but right now my husband and I are not ready. We just lost his mother and grandmother in the same month. He is in a rigorous master's program, and I am working multiple jobs, performing most nights, and recently booked a speaking tour in Europe and Israel for this summer.

After this stranger started asking me about genetically testing my unborn, unconceived children, I couldn't take it anymore. It all got to be too much and I did the worst thing imaginable: I burst into tears, like a girl. Then, I apologized for crying and making everyone uncomfortable, like a girl.

There is a price to being so open about my mastectomy. I have strangers constantly expecting me to adhere to whatever unsolicited advice they throw out, as if everyone's a mechanic and I'm getting my car fixed. Normally it doesn't bother me, but there I was in the exact same scenario I describe in all of my talks and not able to follow my own advice.

I am more than happy to let them feel my new fake boobies and I'll share my intimate details, but my ovaries just aren't up for discussion. Not yet. I understand my boundaries might be confusing to others, but they're mine. Each woman will have her own, and those deserve to be respected. That's what I tell the women I speak to: your body is your business, even when someone yells about your ovaries at a dinner party.

For more information on BRCA and Ovarian Cancer visit cancer.org or mskcc.org.