BRCA1 Mutation Shapes Beineke's Future

Katie BeinekeTwo years ago a genetic test identified a mutation that profoundly changed Katie Beinke’s life. As she began the devastating process of acceptance and healing, she found strength in doing work she’d trained for her whole life: leading, educating, and caring for others. 

 

As the assistant athletic director at the University of Arkansas - Fort Smith, Beineke built her career creating environments where both coaches and student-athletes could thrive by empowering them to be their best in the arena and the classroom.

 

“I know how unique the experience is as a former collegiate athlete myself,” Beineke explained. “I know how dynamic and life-altering it can be, so I strive to make a difference in our students’ lives, serving day-in and day-out to ensure their experience as Lions is the best it can be.”  

 

Over her six years at UAFS, Bieneke has helped develop an athletics program in which young adults can prosper and continue their development. She attends student practices and camps, works every game, and accompanies her teams to every tournament, encouraging and supporting them every step of the way. 

 

“Katie means so much to me,” said Rachel Williams, a UAFS volleyball player from Mesquite, Texas, who works closely with Beineke. “She’s the first face I see when I walk into the athletics office, and she inspires me every day. She’s so easy to talk to, so calm and so accepting.”

 

“She’s the epitome of the woman I aspire to be,” Williams continued. “She’s strong, independent, beautiful and has a true joy that we should all strive to have.”

 

In September of 2017, that strength was put to the test, when doctors notified Beineke that she carried the BRCA1 genetic mutation. A tragic realization, geneticists went on to inform her that a BRCA1 mutation bears an 87 percent lifetime risk of developing breast cancer and a 54 percent lifetime risk of developing ovarian cancer - the disease that took her mother’s life when Beineke was just 14.

 

“I was not prepared to hear those results,” she said. Besides her mother, Beineke had never heard of another family member carrying the gene or either form of cancer. “I thought I was eliminating the possibility of it being genetic. I never thought I would be facing this reality.” 

 

“Losing a parent at such a young age turns your world upside down, and the battle with grief has been a lifelong struggle.” After her mother’s passing, Beineke’s father, John, took up the task of raising two teenagers, Katie and her brother Colin, on his own. “My dad is the strongest man I know. To this day I am astonished by his continuing love and support.”

 

After graduating high school, Beineke stayed close to home, playing collegiate volleyball at Lyon College, where she went on to serve three years as an assistant coach. When she was offered a position at UAFS, Beineke committed to moving four hours away from her family to pursue her dream.

 

Living hours away from her established support network, she began to build her new community in Fort Smith. She discovered a group called the River Valley Ovarian Cancer Alliance, where she was embraced in her grief and found new avenues to help others. It was through Beineke’s outreach and education efforts on behalf of RVOCA that she learned about genetic testing. 

 

“In the beginning I didn’t want to know if I had a mutation,” she said. “It’s a lot to process emotionally, but ultimately I realized knowledge is power and that I should take advantage of modern medicine.”

 

She sat down with a genetic counselor, reviewed her family history and sent off a blood test, tipping the first domino in what would be a rapid series of life-changing decisions. 

 

“The next logical step after processing that I had the mutation was to set up a meeting with a genetic counselor to create a plan of action. She sat me down and took two hours explaining and breaking down my results for me, answering my questions and concerns flawlessly.”

 

Though initially the pair set up a plan to monitor her health with comprehensive checkups every six months, Beineke quickly realized she couldn’t continue to put her life on hold, waiting to see if this was  the month she would find out she had cancer. After her first MRI, Beineke made the bold and challenging choice to undergo a prophylactic bilateral mastectomy at age 30. 

 

“After seeing what my mother went through fighting cancer, I knew that if I had the opportunity to decrease my chances, I had to take it. The statistics showed that the surgery would reduce my 87-percent chance of developing breast cancer to less than 1 percent.”

 

“There’s no way to prepare mentally,” said Beineke, “but I found solace in the communities I’d built with RVOCA and FORCE (Facing Our Risk of Cancer Empowered.)” Following other women her age who were both cancer survivors and cancer previvors gave her perspective. 

 

“You’re so attached to your breasts,” she said with a smile. “So much of our identity as women is wrapped up in this part of our bodies, so much of our beauty and self acceptance, but when I saw these women who had gone through the [mastectomy] process living their lives with such exuberance and passion, I felt comforted. I had a moment, surrounded by people like me, where I realized that I could do it.”

 

After making the emotionally taxing decision to proceed with the mastectomy, Beineke faced another task, one that for many people is difficult: informing her bosses and colleagues of her decision and the time she would need to recover.

 

“I was so lucky to have the support of my UAFS family,” she explained. “The way they supported my health decisions meant the world. I have a boss who fully supported my time away and empowered me on this journey, and my colleagues were behind me all the way.” 

 

“I never feared that I might have to choose between my health and my career," she said. "I had utter support, true, genuine support, and that’s powerful. That’s what makes UAFS special.”

 

On November 28, 2018, Beineke’s doctors performed the prophylactic bilateral mastectomy, removing her breasts, the tissue most likely to develop cancer, and preparing her body for reconstructive surgery to follow. The process was physically and emotionally exhausting, but Beineke found herself encircled in support. “My family were my caregivers, and my sweet stepmom was a rock star to whom I will forever be grateful.”

 

After just a month of recovery, Beineke came back to work in the UAFS Athletics Department full force, excited and ready to return to the 150 student-athletes she serves each year. “I’ve been given opportunity after opportunity to change lives while developing my experience and improving my skill set these past six years. And I was ready to get back to my students.”

 

Nearly a year out from the surgery, Beineke says she’s found a new normal. “I couldn’t have asked for a better experience. I am healthy, and I don’t have to worry.” Her new normal still includes serving the needs of her student-athletes and coaches at UAFS, but with renewed vigor and a new chapter of overcoming to share. As fall sports gear up, student-athletes flock to her office, more amazed than ever at her strength, asking advice and leaning-in to learn from a woman who inspires them. 

 

Beineke has also found herself embraced by colleagues and friends at UAFS who are cancer previvors, like herself, and survivors. And she’s found power in using her voice to educate everyone she can on genetic testing and the marvels of predictive medicine. 

 

“I know some may think my decision was extreme and radical, and honestly, it was, but I know I took this step to save my life,” Beineke explained, her brow furrowed. “I hope someday women won’t have to make these decisions and we will have a cure, but until then I will take advantage of the age I live in and make choices for my health that feel right for me. I have peace of mind, and I have time to do the work that impassions me. I have a story to tell, and I’m alive to tell it.”

 

Though Beineke drastically reduced her chance for breast cancer, the 30-year-old is still surveilling her ovarian health. “Doctors recommend removal of the ovaries (an oophorectomy) and complete hysterectomy by age 40,” she explained. 

 

Researchers with suggest that up to 20 percent of common cancers may be hereditary, caused by gene mutations acquired at birth. BRCA1 and BRCA2 are the two genetic mutations most commonly responsible for hereditary breast and ovarian cancer and can also increase the risk for pancreatic cancer, prostate cancer, and melanoma. The five genes most often responsible for hereditary colorectal and endometrial cancer are also known as Lynch Syndrome genes and can increase the risk for ovarian, stomach and pancreatic cancers as well.

 

FORCE explains that genetic testing can be complex and incredibly personal. The results of genetic testing may affect medical decisions, and the benefits and limitations of the results are varied and unique. The correct interpretation is critical, the organization explains, and it is essential for those who wish to seek genetic testing to consult with a specialist known as a genetic counselor.

 

  • Arkansas residents can find board-certified geneticists who diagnose, manage and treat complex cancer syndromes atthe University of Arkansas for Medical Sciences.  
  • FORCE provides extensive information on genetic testing and cancer treatment and prevention, as well as support for survivors, families and previvors at www.facingourrisk.org.
  • River Valley residents can find information and support for those facing ovarian cancer at www.rivervalleyoca.com

 

The RVOCA will host their eighth annual Teal Night in Tahiti fundraiser Aug. 17. Proceeds from the event go toward advancing the coalition’s goal of supporting local ovarian cancer survivors, previvors and family members through programs, awareness and assistance.

 

September is National Ovarian Cancer Awareness Month.

Credits: 
Rachel Rodemann Putman
Photo Credits: 
Rachel Rodemann Putman
Date Posted: 
Monday, August 12, 2019
Source URL: 
https://news.uafs.edu/0
Story ID: 
5152