I’m not a breast cancer survivor. I’ve never had breast cancer and I hope and pray I never hear the words, “You have cancer.”
Yet for someone who has never been diagnosed with breast cancer, I certainly have some pretty significant scars across the middle of my chest. Why? I’m a “previvor.” Like Angelina Jolie, and so many courageous, yet unknown, women before her, I elected to remove my breasts to save my life.
At the time of my risk-reducing bilateral mastectomy back in January 2003 (has it really been 10 years?) people thought I was nuts. They didn’t understand why a woman with “healthy breasts” would ever have them removed. Healthy is a relative term.
When I was a kid growing up, I lost three aunts to breast cancer. I always thought it was some type of pollution in the water or the land back in Ohio where my father and his family were raised. By the time I was 18, he had lost three of his six sisters to breast cancer.
It turns out it wasn’t the water, but the genes that contributed to their cancers. As Angelina referred to them in her NY Times Op Ed piece when she became public about her surgery, “faulty genes.” For me the faulty gene has a name: BRCA1, and the mutation has a number: Q1200X.
Like survivors who know the specifics of their diagnosis (stage 1, ER+, HER2-) I know my number, Q1200X. It’s that specific mutation on that particular gene that gave me an 85% chance of getting breast cancer and a 55% risk of ovarian cancer.
But it wasn’t the gene alone. What also contributed to my risk was family history. Not only did I loose three aunts to breast cancer, my sister and many first cousins have been diagnosed with breast cancer. In total honesty, I have now lost count, but the actual number is greater than six. One cousin has also been diagnosed with ovarian cancer. Fortunately for us, all have survived.
So yes, the breasts went in 2003, the ovaries in 2007 (a significantly harder surgery than I ever imagined, story to be told at another time).
And now, I call myself a “pre-viver,” a person who has survived the increased risk of inherited breast or ovarian cancer, a term coined by FORCE, Facing Our Risk of Cancer Empowered, a group dedicated to providing information to women at risk of these cancers.
I’ve never called myself a survivor. I don’t know what it means to hear those words or to face that diagnosis. Yet so many women I have met over the years say I am a survivor. When I attended my first “young survivor” conference (now known as C4YW) in Jacksonville in 2008, they told me I was a survivor. “You’ve had four surgeries in two years and a double mastectomy, of course you’re a survivor!” This from an amazing young woman sporting her multi colored leis indicating her status as a five-year breast cancer survivor.
I can’t possibly imagine what it is like to learn you have cancer and I believe I have done everything I can to make certain I never hear the words “you have cancer.” Full disclosure – I could still cut out the red meat and get more exercise. But I will never call myself a survivor. Out of respect to all the women and men who wear that mantle, I will always stay the simple “previver.”
You’ll hear from me from time to time as I have been invited to blog for The Plum.
I’ll be sharing my story, along with fashion tips on surviving beautifully including some posts dedicated to swimwear for survivors. Stay healthy and sexy!