Being BRCA brave: My flat and fabulous life

When I was 28, I found out my aunt had breast cancer and I learned about something called the BRCA1 genetic mutation. Me being in a family of primarily girls — the only boys in this family are the ones who married in or I birthed — I was told we all needed to be tested to see if we had this genetic mutation because it would mean a higher chance of cancer in our lives.

Well, there was one small hitch: I didn’t have medical insurance.

I was a stay-at-home mom and I was relatively healthy so up until this point, not having medical insurance didn’t bother me, until it did.

A month or so after finding out about this BRCA1 gene mutation, my mom tested positive for it. So something I kind of brushed off just got a little bit more real.

My mom is amazingly tough and she decided she was going to be a previvor meaning she chose to not get cancer by having preventive surgeries. She was on a waitlist for the next surgery date to have a mastectomy with reconstruction, until everything changed in late April.

My mom had a routine mammogram and discovered she had breast cancer. Not just that, she had grade three, triple negative breast cancer in the same spot as my aunt. 

At this point, my sisters and cousins had all tested negative for the gene. So in my mind, our generation was in the clear. I got a job with medical benefits June 1. So I got tested thinking my results would come back in three to six weeks just as everyone else in my generation. Ten days later, I got the call from a very peppy genetic counselor who told me I shared the same genetic mutation as my mother.

I thought “this must be a joke because she sounds too happy.” I believe I actually said, “No, you’re joking right?” She informed me she wasn’t joking and I broke down crying. 

I ended the call saying I would call her back. I cried for a few more minutes and called my husband who was out of town at a training for his job.

The call sounded similar to this “Dey crawled me end guy jab da deen.”

In case you didn’t catch that, I said, “They called me and I have the gene.” Don’t worry, I had to say it again for him a few times before he caught it. But, when he caught it I felt his heart break with mine. We had tried to remain positive that I would be lucky like my sisters and cousin. 

After that call, I called my sister who I love with all my heart and soul. My oldest sister Adrienne is perfection wrapped with a bow on top. She’s truly the best gift in the form of a friend and sister. Even though we haven’t always been close, adulthood made that possible. Adrienne cried with me. She said she wished she could take this from me. I would’ve never wished this on her, but I appreciate that she loves me enough to wanna carry this weight for me. Adrienne, before even getting tested had said if she had the gene she would just do monitoring. 

I called the genetic counselor back and asked to be a part of the genetic clinic to discuss my options regarding a mastectomy with reconstruction. After the call, I spiraled through a slew of Instagram hashtags and google searches. I found women who had preventative procedures like Caitlin Brodnick, Paige Previvor & Erica Stallings. They all became a great help to me without ever speaking a word to them. I read what felt like a million books, absorbing everything I could and went to what seemed like a million appointments. My dream position with the state became available and I decided I’m twenty-eight so postponing surgeries would be OK as long as I did my monitoring in the meantime. 

My mom completed chemo and had reconstructive surgery and my aunt had done the same. I was beyond proud of them but the prospect of cancer loomed over me like a storm cloud every second of the day.

One day, I found a lump. I called my doctor immediately and had a mammogram, an ultrasound and a biopsy. A few long days later, it came back as a macro calcification which I was told can be a “warning sign” for cancer but not cancer.

I cried for days knowing my aunt and mom had cancer in the same location that my macro calcification was found in. I buckled down and decided with the support of my department, I was going to proceed with my surgical options sooner rather than later. 

Due to my weight, I did not qualify for reconstruction. So I decided I would do delayed reconstruction.

I was worried about being flat and wondered things like, “Would my husband still be attracted to me,” "Would people think I looked like a man,” and “Would I hate my new body.” Those thoughts plagued me in both my sleeping and waking hours.

I suffer from major recurrent depression along with anxiety so staying on top of my mental health was very important, which I did and I’m glad that even on days when I didn’t feel depressed, I made sure to take my meds and do little things to make sure I could get through each day — living in each moment that was presented. 

I savored the last days with my breasts and in December 2018, I had them removed. I cried a lot but I also smiled a lot at little things like my breasts no longer hurting during “that time of the month” and no longer having to wear bras.

Thanks to my great medical coverage, I left the hospital only paying a $15 outpatient copay and the costs of my prescriptions which was under $30. I was also able to get prosthesis along with three bras for free and I was extremely lucky.

I discovered not long after getting my prosthesis that I hated them though, they were heavy and hot. I discovered if I had to have “foobs (fake boobs),” awesome breast forms were my jam! They were knitted with love which made them light-weight and breathable, but they are only worn once in a blue moon. 

The biggest revelation for me was that even though I loved having breasts and was used to having huge God-given ones, I was still whole. I always knew my breasts were a topic of discussion and became an identifier for me early on. So to no longer have them was frightening and liberating all at once.

With the support of my husband who loves me unconditionally, I decided that I no longer wished to pursue reconstruction. Many were shocked that as someone who is under 30 and can get boobs again that I would choose to not have them.

I understand anyone who has confusion on the topic, but this is where I stand firm:

  • My breasts were mine.

  • They had an extremely high chance of causing me to have cancer.

  • I hate having surgeries and I do not need boobs to be whole or to be a woman.

  • I am happy and I am alive, what could be greater than that? 

This past March, I had a hysterectomy where I lost all except one ovary, but I feel I have gained so much more.

My chances of cancer have diminished drastically by these two surgeries and because of my one “little ovary that could” I will not be going through menopause.

I document my day-to-day along with my journey on Instagram in hopes of helping anyone who is sitting where I once sat or just needs to know that the light at the end of the BRCA tunnel is real.

If that’s you, just know I’m rooting for you! 

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Meet the breast cancer baddie

Diedre Nilmeier is a 29- year-old civil servant by day who lives life fearlessly and fabulously after showing BRCA who is boss. In her spare time, she loves to soak up every possible moment with her two sons and husband.