Saving My Own Life

My name is Sarah and I am a proud previvor. I know there are a few different definitions for the word "previvor" out there, but I think of it as saving my own life. Merely being born with the BRCA1 gene mutation didn't make me a previvor...I felt like it made me a sitting duck. But facing the terror and having the guts to save my own life is what makes me a previvor. In February of 2010, I had a prophylactic bilateral mastectomy to reduce my risk of breast cancer from 80%-90% to less than 1%. This decision did not come quickly nor did it come easily. So, I am writing this blog to help get the word out there about the BRCA1 & BRCA2 gene mutations (which drastically increase a person's risk of breast and ovarian cancer) and share my story of being a proud previvor.

A Little Background
Breast cancer has infected my life in a suffocating way. My aunt was diagnosed with breast cancer at age 30 & fought three valiant battles. First round had one breast removed, second had the other breast removed, & third showed up in her chest wall. She lost her third battle in her 50's. My older sister was diagnosed at age 27. I'm proud to say she hit her 5 year survival mark in November of 2010 & is recently engaged to be married. My cousin was diagnosed at age 24. I'm happy to report that she is a survivor and is currently expecting her first child. One of my best friend's sister was diagnosed at age 26. Three years later, my friend, herself, was diagnosed at age 26. She was just diagnosed in early June...an hour after her sister passed from the disease...at age 29. What kills me about my friend is that her diagnoses could have been prevented. But that is a story for later.

When my sister was diagnosed in late 2005, she was fortunate enough to live on the east coast & have super educated & up-to-date doctors who knew about the BRCA gene mutations. (They are relatively new, having only been discovered about 10 or 15 years ago, I think. I swear some of us know more about this stuff than some doctors I've met.) One of her doctors tested her & she was positive for the BRCA1 mutation. Because the family history (my aunt & cousin) is on my father's side of the family, both he & I were tested. I sort of thought my sister got the rotten deal on this one (as I have had other health problems & the chances are 50/50 if only one parent is a carrier), but we were both positive. So, my father was the carrier. Just three months after my sister's diagnosis, my father was diagnosed with & lost his far-too-short battle with cancer. Though it was not breast cancer that took my father's life, men CAN get breast cancer.

My Story
I was 25 when I learned that I have the BRCA1 gene mutation. I signed up for a clinical trial that kept me "safe" for a year (age 26 to 27). After that, I tried to closely monitor myself. It's difficult for young women, because our breasts are dense & can be lumpy & there are often changes due to hormones & such. We just have to familiarize ourselves with our own breasts & their changes so they don't freak us out. But eventually, I started freaking out. So, I stopped doing self exams because I was terrified every time that I had found something. My sister pushed for me to have the prophylactic bilateral mastectomy. She presented information, put me in touch with some people she'd met in support groups who offered me their personal stories, & was very supportive. But I also had people in my life who told me that having the surgery was all sorts of bad things...crazy, drastic, immoral, unnecessary, against God's plan, was mutilating my body, would make it harder to find a husband, etc. All of that on top of my refusal to do self exams due to panic was overwhelming. So, I didn't do anything. And I lived in that denial for about a year & half.

In late 2009, at the age of 29, I found a lump in my left breast that turned out to be nothing. However, it shone some light on the realities of the BRCA gene mutation I have & prompted me to make one of the biggest decisions of my life. I'm a strong girl, but there was no way I was signing myself up for a battle with cancer! And I felt that by not taking action, I was doing just that...waiting for cancer. So, in early 2010, I took preventative measures & had a prophylactic bilateral mastectomy. Breast reconstruction began immediately & is almost totally complete (just need to get color tattooing to fill in my reconstructed nipples). Because being BRCA1 positive means my risk of ovarian cancer (the silent killer) is increased to about 50%-60%, the next step will be an oophorectomy (removal of the ovaries). Doctors recommend this surgery for women with the BRCA1 gene mutation be done around age 35, with close screening until then. A trans-vaginal ultrasound is recommended once yearly, if not every 6 months.

Some may think my decision to be drastic, but to those people I say, "Well, I'm here. So it's worth it." It's been almost a year & a half since I started this journey & I'll be 31 next month. I'm becoming more & more comfortable telling people about what I've done & feel an obligation to educate & reach out to others. I saved my own life. People in my position should know that they can do the same.

I'm what's called a previvor. And I'm a proud previvor. There is a huge community of us who have faced our risk of cancer, been empowered by information & inspired by the stories of others, & told cancer exactly where it can go!

I hope sharing my story is somehow helpful. I am more than happy to answer any questions, share photos of my experience, or simply talk to anyone who is BRCA positive, knows someone who is BRCA positive, thinks they might be BRCA positive, is or has chosen to become a previvor, or is simply interested in this topic. My name is Sarah & I can be reached here on this blog or privately at proudprevivor@gmail.com.