Voices of FORCE

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Santina Stone, United States

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My journey

Forget the Boobies, Save the Woman by Santina Stone

Click clack, click clack. My shoes echo down the corridor almost loud enough to cover up the beating of my heart. I want to throw up, but instead, I walk up to the desk and let them know I’m here for my MRI breast biopsy. My mammogram was suspicious, so now I find out if I have cancer. I only wait a few minutes before they call me back to change into a gown. “Put it on so the opening is in the front”. I’m escorted into the MRI room and instructed to climb on the table face down and place my breasts in the holes on the table. “Don’t worry we’ll numb you up before we do anything.” It didn’t work. It was excruciatingly painful the whole time. Painful and humiliating and that’s just the test. The next few days I’m haunted by the same snippets of thoughts circling in my head like a tornado waiting to destroy my life. My mammogram was suspicious…. My aunt died of breast cancer at my age… I have young kids… I have an 85% risk of breast cancer…. My kids are too young to lose their mom…. My cousins lost their mom…. My cousins…. My heart breaks for them, still. I miss my aunt…. I miss my Gran… These thoughts spin around and around until the doctor calls. “You’re clear! No cancer! Now forget about it and don’t worry for the next six months”. I hang up and breathe a sigh of relief. I dodged the bullet this time, but the chamber is loaded and spinning. Where will the bullet stop next time?

Six months later, I’m sitting in my car in the parking garage. I’ll go in when the song finishes. That’s what I told myself two songs, ago. I don’t want to go in. I don’t want to face my mortality, again. I think I’m going to throw up. Why the hell didn’t I ask for a valium?! And, then…. My aunt never knew she was BRCA positive. What if she knew? What if she got screenings? Maybe she’d still be here. I miss her. I step out of my car and walk inside.

A few years ago I found out I was BRCA positive when I took a 23&me test, (before there was any controversy with the FDA and the BRCA test) to look at methylation pathways. But, I learned much more than my methylation pathways, I learned how I was going to die. A BRCA mutation carries up to an 85% lifetime risk of breast cancer and a 65% risk of ovarian cancer. My breast doctor poignantly told me I needed to decide if I want to avoid cancer treatment or not. Preventative surgery is currently the only way to prevent this invasive cancer.

I’ve learned that even talking about preventative mastectomies causes people to spew hateful diatribes about removing body parts. I’ve been told to think positive and focus on the 15% chance that I won’t get breast cancer, instead of having a mastectomy with implant reconstruction. Focus on the happy and forget the bad. Focus on the happy, until I have no choices or options? Do you know what shocks me? It shocks me that I live in a society where it’s okay to get implants for vanity, but it’s not okay to get implants to save my life. Imagine I give you a gun that’s 85% loaded so we can play Russia roulette. On the plus side, it’s 15% empty so think positive! Ready, set, go!

I hate even the thought of having a mastectomy. I hate everything about it. The drains, the pain, the expanders, the risk of necrosis, the multiple surgeries. But, getting a mastectomy is only the second worst thing I can imagine and I’ll do it to avoid the worst thing I can imagine.

Besides, my body has never defined who I am. My breasts are not so important that I would risk my life or put my family through my chemo and radiation treatments. They are not important enough for me to sacrifice my life for the chance to keep them one second longer. I mourned for a second. I mourned until I realized I’m not dying, I’m being given a chance at life. After all, I can get new boobies, but I can’t get another life.

If I could do it over again

If I could do it again, I would never have allowed potentially deadly expanders to be implanted. Fortunately, I found out the risk of implants before my exchange surgery and am now waiting for my upcoming DIEP flap.

My participation with FORCE

My participation with FORCE gave me knowledge about what being BRCA means. Not just medically, but personally - physically and spirituality. Knowledge is power, but power is not free of roadblocks. Preventative surgery is highly controversial and not an easy decision to make. I was inspired by others’ stories and I hope my story helps others in their journey.

FORCE:Facing Our Risk of Cancer Empowered