I’m a Mutant, Now What? Being Diagnosed with BRCA2

I was told I had a genetic mutation and Professor X did not come to my house. I’m torn up about it.

What happens when you have BRAC2? Nothing, really. Let me explain.

When my mom found out she had BRAC2, I went with her to her genetic counseling session. It was at the Levine Cancer Institute. I do not do well with anything medical. As soon as I saw other women in the waiting area — some with no hair, I started panicking and crying. Could this be real? It was just the gene, not the cancer… but definitely, the cancer was coming to get us, for sure!

During the genetic counseling, we drew out our family tree and identified all those who had or may have had cancer. My grandparents are from the Philippines. Even if they had the best medicine, back in the day, there was no telling if someone died from breast (or ovarian) cancer. So, we did a lot of guessing. During the visit, they talked about my mom’s options and set her up with a surgeon. The counselors convinced me that I needed be tested as well. Did I want to know? Better question – Did I want to be stuck with a needle?!

Once they convinced me the test would only involve mouthwash and spitting, I was on board. A week later, I got the call. It went something like this:

Counselor: “I’m sorry, you have the gene… are you okay?”
Me: Oh, I do? Good to know. I’m fine!
Counselor: Are you sure you’re okay?
Me: [cold sweat] Yes, of course. This is going to be great. I gotta get back to work. Thanks for calling. Byyyyeeee!

The weeks that followed, I was buried in anxiety. I told a few people like it was no big deal. “Yeah, I have the breast cancer gene. At least I know now so I can… well, so I can know. Because knowing is half the battle…?”

Now, you know. What’s next? Once I had my genetic counseling session, I was a bad patient.

I met with a breast surgeon, had one mammogram, and fell out of the plan they set for me. I think I was lost in the “system” and I made no effort to get myself back into it. Plus at the time I was a new mom, we were building the foundation of our company, and I was in a little bit of denial.

A good patient would follow a plan each year that includes a test or in-person exam every THREE months. EVERY THREE MONTHS I was either going to have a breast exam, a mammogram, another breast exam, and an MRI with dye (that means needles).

The point of each one of these checkpoints is to make sure cancer is not present. To me, that’s 4 times a year I’m waiting to hear bad news.

Did I mention, my chances of getting cancer are 85%? I’ve never been a gambler.

Just this year, I entered myself back into the “system” with the hopes I could trade that MRI (needles, remember the needles?) for a nice ultrasound every year (a suggestion/trickery by my regular gyno). Unfortunately for me, my surgeon gave it to me straight and put her foot down. She really brought me down to earth and gave me my options.

“Look, if you’re so anti-plan, you should think about having the prophylactic mastectomy surgery. You have options for reconstruction. You will reduce your chances of getting breast cancer to lower than the regular population. Did I mention there’s a type of reconstruction that includes an insurance-covered tummy tuck?”

She sold me. I have the power to take control of my life and make this decision. Why would I follow a plan waiting for bad news when I could prevent my odds and never have another mammogram or MRI (needles)?

I left and agreed to take a couple steps. I would meet with the plastic surgeon, schedule my one and hopefully only required MRI and call my insurance company to find out how much the surgery would cost.

On March 13, 2017, my friend Cecilia died from colon cancer. She was only 32 years old. From diagnosis to death was a long, hard 18 months. She gave me the strength I needed to make my decision. How could I sit here not doing anything, knowing my odds and having the means to lower them? It seems almost insulting not to take action knowing how much she would have given to have the chance to grow old. I couldn’t peace out on the world and leave my daughter without a mom because I selfishly was afraid of surgery (and recovery).

Knowing and doing are two different things. I chose to use my knowledge to DO something. Follow me here on the blog to keep up in real time!

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8 thoughts on “I’m a Mutant, Now What? Being Diagnosed with BRCA2

  1. Hi! Your sister-in-law and I share a mutual friend, and she shared your blog with me. I’m BRCA2 positive. You CAN do this!!!! I found out when I was 42 during my mom’s long and hard battle against Stage IV ovarian cancer (thankfully she is right at 2 years no evidence of disease). I immediately elected to have hysterectomy and removal of tubes and ovaries (where they found and removed pre-cancer cells). I say that the decision to have a prophylactic double mastectomy was a harder decision, but I think I always knew it was the best option for me. No way I could do all that monitoring! The mastectomy procedure was much less painful than I anticipated (nerve block in my upper back or something). The worst part is the drains. They are yucky and bulky. How something better hasn’t been invented yet baffles me! You know your husband will love you forever if he changes them more than once! I took full advantage of my recovery period (caught up on all the tv I’d been meaning to watch, absolutely no work, had my family waiting on me, etc.) Long story short, I’m very happy with the end result, and I never have to wear a bra!!!! I did have some down times before my surgeries- sometimes you just need to have a pity party, but like you – I knew what I needed to do. I needed to do whatever I could to stay healthy for my family- my daughter was 7 at the time, and I needed to do it on my terms. When it gets tough just remember- the surgery may take pieces and parts of you and change your appearance (at least when naked) but it doesn’t take away your heart and soul or change who you are! Your family and friends will still love you, and you will still love yourself! I’ll send my info to you via my friend and your SIL – please feel free to reach out anytime, for any reason! Keep that BRCA+ attitude!!!

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    • Kim, Thank you so much for your message. I’m tearing up reading it. Sometimes the experience does get real. Last night my dreams were filled doctors visits, surgeries and recovery rooms. How exhausting! I am so thankful to you for sharing your experience and positive attitude. I’m so glad to hear your mom is clear! That is wonderful. I’m not too upset about the changes to my body. I’m actually excited to see what I look like with a flat stomach. I’ve never known such a time – especially after having a baby. 🙂 Would love to keep in touch and learn about your journey. If one good things comes from this it’s all the connections with awesome people! I’m feeling the love and support of everyone surrounding me and it humbles me.

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  2. Thank you for sharing your story. I too am BRCA 2 positive. I like to find other women who too document their journeys. It’s nice to hear you are not alone in your journey and how we are feeling. I too have a blog on here if your interest. Stay Strong! & thank you for sharing!

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  3. Thank you for sharing your story. I too am BRCA 2 positive. I found out right before Thanksgiving last year. It is nice to hear other women’s journeys. I did not realize how many women there actually is out there with this gene. Stay Strong! and thank you again for sharing your story. I started a blog on here too, it has helped me get out things that is hard to talk to about to people because they don’t understand how I feel or what I am going through.

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