Why I'm saying ta-ta to my ta-tas

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A year and a half ago, I tested positive for the BRCA1 gene mutation, which means my lifetime risk of getting breast cancer is as high as 87%. Given my family history, I was expecting the result, but it still took time to process.  

For BRCA1 patients, the question of cancer is not if, but when. It was terrifying and empowering at the same time to know. I was forced to confront my risk head on, but I also had the power to do something about it. I got tested with the intention that I would take everything out if my results came back positive. When they did, I began planning a preventative bilateral mastectomy to reduce my lifetime risk of breast cancer to under 5%.

I am armed with knowledge largely thanks to the women in my family who came before me:

My Aunt LouAnn, who had breast cancer twice, in the 90s and during my freshman year of high school. When her hair fell out during chemo treatments, she asked us to paint her bald head like an Easter egg and have a photoshoot in the backyard - because why not?

My cousin Kristen, who tested positive for the BRCA1 mutation when she was 19 - yet her triple-negative cancer diagnosis at age 25 was still a surprise. She kicked cancer’s ass and is now over 6 months cancer-free. 

My mom, who is flying up to take care of me just months after her own mastectomy in March (which she crushed btw).

Even if something is good for you, it can still come with loss. I remember one of the first times it sunk in: watching a mom nurse her son to sleep before leaving him with us for the evening, as the dad looked and smiled. I felt a twinge realizing I wouldn’t be able to do the same for my children - having a mastectomy means you can’t breastfeed later. I know it will be ok, but it still makes me sad. 

There are other physical outcomes I’ve thought through - the surgery that takes out my breast tissue takes the nerve endings with it, which results in a loss of sensation. I don’t know what my body will look like during the healing process or when it’s all over in a year.

BRCA1 patients also carry an up to 50% lifetime risk of ovarian cancer, and it’s recommended to remove ovaries before age 35. I’m putting it off for now in the hopes that I’ll be able to have children naturally before then. So… I’ll cross that bridge when I get to it.

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I am scared, but confident that I’m doing the right thing for my health and future. I’m making a choice that will help me live without fear and be there for my family. Sometimes I think about getting cancer while pregnant, or while taking care of young children. Although the timing will never be perfect, right now is as good as it gets. The best part of doing this preventatively is that I can control many aspects of my surgeries. It’s more than a lot of people get.

On July 16, I will have my mastectomy. Basically my doctor will make an incision along the top of my nipple and scoop everything out from the inside. I’ll get to keep my nipples (whoo!) and the plastic surgeon will put in expanders, which are like empty sacks. After I’ve healed for a while, they will slowly fill the expanders with fluid over a few weeks. This will stretch my skin in preparation for permanent implants. When I’m the size I want we’ll let everything settle for a few months, and I’ll go back in for reconstruction toward the end of this year/early next year.

It was never a question for me that the pros outweigh the cons. If you are reading this, know that you are the only one who can make decisions about your body, but the best thing you can do is be informed. There are always options, and I encourage you to seek out knowledge and medical experts that will help you understand them.

I have a wonderful medical team that has been candid in response to all my questions, even to admit when they didn’t have an answer. My incredible mastectomy surgeon, who sings her patients to sleep, insisted I see a therapist to ensure my mental health was taken care of, too. Every Thursday my plastic surgeon holds new patient classes, in which he spends an hour explaining different reconstruction options so each patient can choose what’s best for her.

I talked to a few great women from the FORCE network and cried over the phone to complete strangers. I’ve read stories on the internet from other BRCA1 patients who made me feel less alone on the hard days. 

Most of all, I’m grateful that modern medicine and my own family’s knowledge gave me the chance to take my life into my own hands - and I’m grateful for precious community that has walked with me every step of the way. Here’s to perky boobs forever, and hopefully cancer never!

 
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