In case you didn’t notice from the sea of pink surrounded by all of the autumn and Halloween decorations, October is Breast Cancer Awareness Month. As women, this month is important to Jenny & me, but especially because I am the daughter of a breast cancer survivor. I am also a previvor. What is a previvor? A previvor is someone who is predisposed or has an increased risk of inheriting a disease such as cancer. In my case, I am at an increased risk for developing breast and ovarian cancer (along with a few others) because I have the BRCA2 genetic mutation. **FYI: Everyone has the BRCA1/BRCA2 genes. There are actually over 100 genes associated with breast cancer. Unfortunately, some of us, myself included, have mutated genes. Some famous people with a BRCA mutation: Angelina Jolie and Christina Applegate are both BRCA1+ (with Angelina being a previvor and Christina a survivor). As a part of Breast Cancer Awareness Month, I thought it would be important to share my story in case it can help someone to know their risk.

At the young age of 34, my mother was diagnosed with breast cancer. I was in 3rd or 4th grade at the time of her diagnosis. My sister was younger and doesn’t have a ton of memories of that time, but I have very vivid memories. I remember all of our family and friends coming together to help care for us (my uncle doing my hair in the morning for school, going to a friend’s or neighbor’s house after school, etc.). I also remember staying up late at night listening to my mom spend her nights in the bathroom because she was so sick from chemo, sleeping in a recliner because laying flat hurt so much, her beautiful black hair falling out, the wigs she wore to cover it up, the scars. Even back then, I had a voice in the back of my head that naggingly made me worry about whether or not this would be my future.

Luckily, my mom recovered and we didn’t talk too much of it for many years. When my sister and I were in college, we were both initially drawn to the medical field. I might not have lasted long in my pre-med program, but my sister became a nurse. In talking with our gynecologists, red flags were raised due to our mom’s young age at time of diagnosis. My maternal aunt also because diagnosed with breast cancer at a young age. We began discussing genetic testing, but didn’t understand too much about it and there was the looming question of whether or not insurance would cover it. The discussion didn’t really go anywhere, and the idea of genetic testing got placed on the back burner.

Fast forward several years to a happily engaged me. At 34, I was having the time of my life planning my wedding. I had been getting mammograms from the age of 30, and it just so happened that I was due for my next annual screening right before the wedding. And that’s where the happy planning hit a slight bump in the road. My mammogram came back abnormal. I went for the diagnostic mammogram with the possibility of needing an ultrasound, and my sister and I revisited the genetic testing discussion with our mom. In talking with my doctor, insurance was more likely to cover my testing if my mom, the cancer survivor, tested first. She agreed (though I think with some hesitation...it felt a bit like a don’t ask, don’t tell situation. If I don’t test, then I don’t find out the answer). Needless to say, her test came back positive for the BRCA2 mutation. My aunt, sister, and I also tested (as did another aunt and cousin who were negative) and we were all positive.

My sister is one of my best friends. She has always been by my side, no matter how moody I was. To have her go through the diagnosis at the same time was almost a relief. We both agreed that our boobs were ticking time bombs, and that if we were positive for the gene mutation, we would undergo preventative double mastectomies. So having been a newlywed for 5 months, my husband and I prepared for my preventative surgery. My friends were absolutely amazing, throwing me “Ta-ta to the Tatas” and “Boob Voyage” parties. It was a way to help me have a little fun while grieving the loss of something I believed defined me as a woman. And while the decision to have the surgery felt easy, it came with struggles, including the loss of the opportunity to breastfeed my future children.

Only a few months after undergoing a preventative double mastectomy, my husband and I began the process for in-vitro fertilization (IVF) and had a successful frozen embryo transfer (FET). With the delivery of my first son, I went through the grieving process all over again. The emotions that came along with the realization that I wouldn’t get to experience breastfeeding with him came flooding back. My nurses flagged my file, and my husband was on guard at the door so I wouldn’t have to encounter any lactation consultants. Who knew it would be a blessing in disguise. While I wasn’t formally diagnosed until my second pregnancy, I definitely experienced symptoms of postpartum mood disorder with both deliveries. The ability to have anyone grab a bottle and feed my babies was incredibly helpful. My husband was actually the first person to feed both boys immediately after their entrances into the world (their eventful entrances into the world as they were both pried from my body lol).

By the delivery of my second son, I was much more confident in my decision to have the preventative mastectomy. I was prepared for anyone that wanted to pressure me into breastfeeding (though I was lucky to never have to experience any negative comments). I proudly displayed a poster that was made for me by a breast cancer survivor that notified anyone that walked into my hospital room of my choice to formula feed. I got so many compliments on the poster! Too bad I accidentally left it in the room when it was time to head home!

My previvor journey isn’t over. As stated earlier, I’m also at a higher risk for ovarian cancer. With the emergency c-section I had with my second delivery, the doctors and I made the decision to also preventatively remove my fallopian tubes as newer research is showing that ovarian cancer often starts in the fallopian tubes. By the time I turn 45, my ovaries will have to be removed as well. Until then, I get my ovaries checked quarterly with a transvaginal ultrasound and CA-125 blood test.

I know that preventative surgeries aren’t for everyone. I respect everyone’s individual decisions to take control of their health. However, I do encourage everyone to know their risk. Find out your family history. Talk to your doctor. This will allow you to make an educated, well-informed decision when it comes to your health.

And ladies (and gentlemen that may have an increased risk), don’t forget to Feel It on the First! It’s important to do your monthly breast self-exam, so do it on the first of every month so you don’t forget!

Resources

**Not all of resources listed below are specific to breast cancer.**

FORCE - A great resource for hereditary cancer.

Bright Pink - An organization committed to educating women on knowing their risk.

Susan G Komen - Breast cancer research and support organization

Liv & Let - A breast cancer support and information hub. You can also order curated gift baskets and other items from the Giv Shoppe to send to your loved one.

Imerman Angels - Provides peer-to-peer support for cancer fighters, survivors, previvors, thrivers, and caregivers.

Pickles Group - A new organization whose mission is to support children navigating their parent’s cancer journey.