Decoding Annie Parker: My Journey from Patient to Advocate
Note: This post is written by Annie Parker, President and founder of the Annie Parker Foundation. Annie has been interviewed in multiple publications about her cancer experience, including Forbes magazine, Entertainment Weekly, and others. Since her diagnosis in 1980, she has been a fierce advocate for cancer awareness and advocacy and is a frequently sought public speaker on cancer-related issues.
This may seem strange to some, but getting the news that I was BRCA-positive was actually a huge relief! I’d lost my mother, sister, and cousin to cancer, and in my gut, my heart of hearts, I always believed this had to be more than just “bad luck”; there had to be a medical explanation. I became so obsessed with the notion, people started thinking I was losing my marbles! I religiously checked my breasts for lumps or bumps, and when I found one while coming out of the shower one day, I knew for sure that I was on to something. The news didn’t scare me; in fact, if my results had been negative, I would have asked them to re-test me. I was convinced that something was amiss in our gene pool.
After learning I was a carrier, I felt incredibly empowered because now, I was able to make educated decisions about my health and felt an overwhelming sense of validation. I had a double mastectomy and had my ovaries removed once I learned I had ovarian cancer as well. I also chose to be very open and honest with my diagnosis. I was 14 years old when my mother passed away and no one talked about what she died from. I didn’t even know she was sick. Cancer was very much a closet disease in our house. I didn’t want another member of my family, or anyone for that matter, to be left in the dark like I was back in the 60’s. I had so many unanswered questions, with none of the resources that we have today. We were dependent on professionals who, frankly, did not have all the answers.
As many people know, cancer is an extremely isolating disease and it doesn’t just affect the sufferer, it impacts the whole family. Your loved ones have to deal with the ominous “Big C” hanging over their heads, and they’re filled with fear and confusion. But even in the worst of times, hope remains. One of my coping mechanisms was to laugh. You can’t change your circumstances, but you do have control over your attitude. Yes, cancer sucks but life doesn’t have to.
My next step was to help other potential mutation carriers get through their testing. As one of the first Canadian women to be tested for BRCA, I would eventually have tools such as the film “Decoding Annie Parker” (based on my cancer journey) and my personal memoirs that I could use to introduce my story to others. However, when I first wanted to begin helping others, awareness of inherited breast cancer was still low so, I wasn’t sure how I was going to relay my story to the public. I ended up volunteering for different cancer organizations until I had Hollywood come knocking. Decoding Annie Parker offered me a louder voice and created greater awareness for BRCA and genetic testing. And of course, Angelina Jolie’s bravery and openness about being a BRCA carrier also helped spread the message that testing is available. It also confirmed that cancer can happen to anyone. Cancer doesn’t care if you’re a famous Hollywood actress or a 24 year old college student. Knowing the likelihood of it coming into your life gives you a potentially life-saving heads up.
October is Breast Cancer Awareness Month, and like many, I reflect on my personal experience over the years with breast and ovarian cancer. Today, I am grateful to say I am cancer-free and live a very full life. I have my health, a family that loves me, and I laugh every chance I get! My story is not unlike many others, which is why I continue to share it.
Once you’ve educated yourself on your personal genetic information, you’re no longer at the mercy of other people’s experiences or hypothetical scenarios. You’re able to have a balanced and fair conversation with your doctor about your health and the options that are available to you. And to me, that’s power; you’re playing with a full deck of cards. And one decision is not better than another person’s decision. It’s personal, it’s yours, and no one can tell you what’s better for you than you.