Tough choices in fight against breast cancer gene

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.

My preventive mastectomy: Staying alive for my kids

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 full recovery.

Breast cancer awareness: Not so pretty pink

As an outreach coordinator for the organization FORCE (Facing Our Risk of Cancer Empowered), Shainman provides resources for women who grapple with the tough decisions they are facing after finding out they are BRCA gene carriers.

Having traveled this path, she is very honest in telling women how the surgery will alter their bodies and change their life. She believes education is key among doctors and patients to prevent, treat and conquer cancer in BRCA gene carriers.

“Hereditary cancer needs to not only be on the radar of all women, men and families – but on doctors’ radar, no matter their specialty,” she says. “The medical community as a whole needs the training/education on hereditary cancer so they can look for hereditary cancer signs in their patients, ask their patients the right questions and then advise those patients that fit the criteria to get genetic counseling.

“People make hugely important health decisions based on this one test, so the pre-genetic test counseling and the post-genetic test counseling are essential.”

Shainman has a history of cancer in her family and knew she needed to be tested for the gene. Once the results came back positive, she did a lot of research and used the FORCE organization to help her make the decision.

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.”

Readers: Less pink, more cures for breast cancer

Early detection

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.

Breast cancer prevention: what every woman should know

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.

Heartache

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.”

A bra that could detect cancer

Thriving

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.

But, she says, after being in denial for about 20 minutes, she made the decision to have her breasts, ovaries and fallopian tubes removed.

“I was a ticking time bomb with an 87% chance of getting breast cancer and a 44% (chance) of ovarian cancer,” she says. “(I) didn’t like the odds.”

She still gets screenings, although she has been told the chances of her developing cancer are slim. She no longer needs mammograms and describes her breasts as beautiful. She is also no longer in fear of developing cancer and is very involved with the organization she founded after being tested, previvorsandsurvivors.com.

She created the organization to offer support to women who are BRCA gene carriers.

“While I was going through my previvor experience, I was invited to join a group of women breast cancer survivors,” Young said. “I can certainly empathize with the breast cancer community, but those of us who have never heard the words ‘You have breast cancer’ are not the same.”

Have you or a family member been tested for the BRCA gene mutation? Share your story on iReport or join the discussion on our Facebook page.