Tough choices in fight against breast cancer gene

Story highlights

  • Certain gene mutations increase risk for breast and ovarian cancer
  • BRCA1, BRCA 2 account for 5% to 10% of breast cancer cases, 1 in 7 ovarian cancer cases
  • Gene carriers face tough decisions about preventive surgeries, treatments
When Erin Molenhouse went in for a physical this year, a nurse practitioner urged her to get tested for the BRCA gene mutation. It was a difficult moment for the 37-year-old mother.
"Why would I want to know that I am going to get cancer?" she remembers thinking. Her mother died of the disease when Molenhouse was 22.
Her nurse explained there were benefits to knowing, even if the test came back positive. Molenhouse learned that having the mutation didn't have to be a death sentence, but could be an empowering piece of knowledge.
"If the results do come back positive then I will have the edge," Molenhouse said before receiving her results.
Molenhouse is one of more than 40 CNN iReporters who shared their experiences with testing for the BRCA gene mutation and the choices they were faced with as a result.
Thanks to advances in genetic testing, many women are finding out if they are predisposed to breast cancer and making life-altering decisions at young ages. While people with the gene mutation may never get cancer, carriers are at significantly higher risk of developing breast, ovarian and other cancers -- and passing on the mutation to future generations.
Mutations in the breast and ovarian cancer susceptibility genes, known as BRCA1 and BRCA2, account for 5% to 10% of all breast cancers and one in seven ovarian cancer cases.
If the results of the BRCA gene test are positive, there are options. Some women will have preventive mastectomies, remove their ovaries, take anti-cancer drugs or change their lifestyles entirely before ever developing the disease. Whatever their choice, genetic testing can have a profound ripple effect throughout families.
A big decision
Testing positive for the BRCA gene wasn't the hardest thing that Eryn Powell heard from her genetic counselor. It was hearing, "What's your time line?" The genetic counselor meant her time line for getting married and having kids. This was all before Powell knew whether she had the gene. She says at that moment, it became real.
Women with the BRCA gene are at high risk for having aggressive types of breast and ovarian cancer. In order to prevent ovarian cancer, women are advised to have either a hysterectomy or oophorectomy (removal of the ovaries), both of which will eliminate all chances of having children biologically.
Powell broke down in tears. Here she was, 24 years old, needing to plan her life as it was just getting started.
After reading blogs, medical journals and speaking with doctors, she opted to have a preventive mastectomy to remove both breasts. Her gynecologist was very sympathetic to her situation and advised her to wait on the oophorectomy or hysterectomy because she is young and will most likely want children in her future.
As a 20-something in a serious relationship, one of her biggest concerns before her mastectomy was: Would her new breasts be cosmetically appealing? She didn't want to look different from other women.
Her family was absolutely supportive of her decision, but some of her friends asked, "Why would you cut off a healthy part of your body?"
The answer was simple. Powell had seen the effects of cancer firsthand, watching her aunt die from the disease.
"If I have to cut off a part of my body so that my future husband and family won't have to go through that, then I will cut off anything," she says. "No questions asked."
Recovery
"Waking up from my mastectomy/reconstruction surgery, I felt pressure," Amy Shainman remembers. "It goes from feeling like an elephant, to a rhinoceros, to a lion, to a cheetah, to a large dog. It then feels like you have a heavy log on top of you. Eventually the pressure turns into feeling like there is lap dog on your chest, then a small cat."
Shainman says it took her about two weeks to feel somewhat normal after her surgery and six weeks for a ful