By Kelly Miyahara
First my sister, then my mother, then me
Having no family history of breast cancer, I was shocked when my older sister, Trina, was diagnosed with bilateral stage 2 breast cancer two days before leaving for vacation. My family felt the need to be together, so my mom, dad and I bought last minute tickets and joined her with my seven-month-old baby boy. Shortly after, Trina tested positive for the BRCA2 genetic mutation. We had no idea how all our lives were about to dramatically change. I was informed that I should be tested, too. The doctors assumed that since my mom was 71 and never had cancer, the mutation was passed down by our dad. We soon learned that both my mom and I were also BRCA2 positive.
Trina had a double mastectomy, followed by chemotherapy, and later a hysterectomy and reconstructive breast surgery. It was shortly after she began chemo, and just three months after her diagnosis, that we received more news. Two months shy of my mom’s 72nd birthday she, too, was diagnosed with breast cancer. Thankfully, it was caught early, Stage O DCIS. Mom ended up deciding against a mastectomy and had a lumpectomy, followed by radiation and an oophorectomy. Throughout this cancer journey with Trina and mom, I was aware that it would soon be my turn to make some decisions; however, it was easy to put off while focusing on their health first.
I did meet with a breast surgeon and a gynecological oncologist to understand my options. At that time, I wasn’t considering preventative surgery any time soon. It was enough to try to accept the need to stop breastfeeding so I could have my first proper mammogram. I could not imagine not being able to carry my baby for months while recovering from surgery, nor did I want to give up the chance to breastfeed again if we decided to have a second child. It wasn't until the following summer that I started to rethink my future plans and made doctor appointments to reassess my options.
My preventative double mastectomy may have saved my life
I eventually scheduled my preventative double mastectomy. Everything became crystal clear when I got the call from my surgeon three days after the procedure. "You made the right decision. We found cancer in your pathology." Thankfully, we caught it in time. It was DCIS and still contained. One month later, I met with my oncologist to discuss post-cancer treatment and three months after that I had breast reconstruction. I am waiting until I decide if I will have another baby before having my ovaries removed. In the meantime, I have a pelvic ultrasound and a gynecological oncologist appointment every six months. I have check-ups every three to six months with my breast and plastic surgeons.
The BRCA2 genetic mutation extends beyond my immediate family
We have alerted everyone in our family who could be impacted by our BRCA2 genetic mutation. Of the family members we know who have been tested, my mom's two older sisters, her two cousins (one of whom was diagnosed with breast cancer) and my first cousin have tested positive. Only two other family members have tested negative.
My mom's cousin, who was diagnosed with breast cancer, and her side of the family, were not particularly close to the rest of the family. Thanks to cancer, a line of communication has opened and we are all now in better touch! It's amazing how something so ugly can turn into a beautiful thing.
How FORCE has impacted my life
I first discovered FORCE after my sister's diagnosis. However, it wasn't until I began my own journey, that I looked into it more. I felt compelled to start a fundraising page in an attempt to feel empowered to do something positive. This year, I revived the fundraiser and reached out to personally connect and become more involved. My parents, my husband and I attended our first FORCE meet-up this past October. It was not only eye opening and educational, but it was also emotionally moving. I had never been surrounded by other people, like me, who were BRCA positive, who have undergone mastectomies or are considering it. I loved talking to others, hearing their stories, and being able to relate to, support and connect with families, like mine. It also provided a better understanding for my husband, who was not able to attend my doctor appointments and didn't really have an understanding of what I had experienced. It was a relief that he could learn about it from someone other than me, as trying to put it all into words was often a challenge.
Turning a negative into a positive can be a wonderful thing
The empowerment of knowing is priceless. Cancer is a horrific disease, and it is hard to imagine any good in it. However, I have learned that with difficult challenges often come the best things in life. I could not imagine my family being any closer than we were before our cancer journey, but we are. Cancer has also brought a new family of wonderful humans into my life. Having the chance to bond with and support others through their journeys has been the best feeling.
From my family’s cancer journey comes a film with a human touch
When my family's world was turned upside down, I felt like it could not be in vain. I knew that our story could empower others and possibly inspire hope and togetherness. I wanted to use my story to create something with a human touch that people could relate to and would learn from. We are now on our way to making a full feature length documentary movie and I look forward to sharing it with hope to not only create awareness about hereditary cancer, but possibly even save a life.
Kelly Miyahara, BRCA2 Breast Cancer Survivor