She chose to have both a hysterectomy and mastectomy to avoid cancer. She believes having surgeries are the only "cure" for BRCA patients.
She says she could not live with the continual anxiety of not knowing what would show on her next mammogram or breast scan. She says having the surgery allows her to feel relieved.
"Every day when I see my children at the breakfast table and am able to make them breakfast and get them off to school ... I am thankful and I know I made the right choice."
A few months after Cara Scharf graduated from college, her dad encouraged her to get tested for the BRCA mutation. Her mother died of breast cancer when she was 3, and her grandmother died of ovarian cancer before she was born.
When she tested positive for the gene, surgery seemed like a drastic move. She was 22. She decided it was best to undergo regular screenings and MRI scans to detect any abnormalities early.
"I think some people don't realize how serious of a surgery it is," Scharf says. "It is an amputation. Your body will never look the same and there is a high risk of complications. I wanted to keep my body the way it was and I was convinced that I had time to make my decision."
Three years later, her scans showed breast cancer.
The doctors were able to catch the disease in the early stages because she had been so vigilant about her screenings. But having breast cancer and undergoing chemotherapy at 25 was rough. Her brother got married that year, and she had to wear a wig to the wedding.
She, too, decided to have a double mastectomy to prevent the cancer from returning. She still lives in fear of a relapse.
"Young breast cancer survivors have a whole set of issues to deal with that are different from breast cancer survivors who are older," she says. "I'm not saying the following considerations are exclusive to young breast cancer survivors, but they are experienced differently: Fertility, relationships, long-term survivorship, body image, dealing with friends who don't understand."
She says she now finds herself asking a lot of existential questions like, "Why am I here?" and "What's my purpose?"
She doesn't blame herself for not having surgery when she was younger. She has joined a couple of young breast cancer survivor groups and says they have helped her through the process. Her focus now is how she can live out her dreams.
Lisa Fassnacht watched her sister, Christy, die from breast cancer when her sister was 34 years old. While Christy was fighting for her life, she begged her sister to get tested for the gene mutation and have the necessary surgeries so Lisa's children wouldn't have to watch their aunt battle a debilitating disease.
"My family, friends, sister and doctors all wanted me to have the surgeries right away," Fassnacht said. "I was very reluctant. I suppose I was still in a bit of denial. I was a single parent, working full time as a nurse, and spending my weekends driving four hours to help care for my sister. I didn't have time to think about me."
She eventually went for the test, convinced that the results would be negative.
After hearing the results were positive, she remembers feeling shocked. Since then she has undergone a prophylactic bilateral mastectomy and she is scheduled to undergo a hysterectomy later this month.
"It has been very difficult. Not only did I have to lose my breasts that make me look like a woman, but I also will soon lose my ovaries that make me a woman. I remember telling my sister 'Oh, they are just breasts. The doctors will give you new and improved ones when you are all done.' Now I know why that was the wrong thing to say," she says.
At the time of her mastectomy, Lisa was newly engaged (she is now married) and worried that cutting off her breasts and having a hysterectomy would change the dynamic of their relationship emotionally, physically and sexually. She says her husband, Dave Fassnacht, was -- and is -- absolutely supportive.
"She is my hero for making the very difficult decision to have these surgeries, while 100% healthy, to prevent cancer from taking a wonderful wife and mother from my life and the lives of her children," her husband says. "We will always be grateful for what she is doing."
Tobey Young, 54, believes you have to be positive when going through this journey. While there will be hiccups, staying positive is key for speeding along the recovery process, she says -- allowing you to be here for your childrens' weddings, the next birthday and your next anniversary.
It has been five years since Young's last surgery and she says she feels absolutely fabulous. Young has never had cancer and therefore identifies with the term "previvor." The term has been adopted by many carriers who have taken preventive measures -- surgeries, drugs or vigilant screenings -- to dramatically reduce their risks of developing the disease.
In 2007, Young's physician told her she was positive for the BRCA gene. The first thing she remembers saying was, "Cut off my boobs -- what, are you crazy?" She was aware of her family's history of cancer and was already vigilant in testing for breast cancer through screenings and mammograms.