Since the discovery of genetic mutations BRCA1 and BRCA2 in the 1990s, testing for the genes has become a common course of action among patients and families with a history of certain cancers.
According to the National Cancer Institute, the lifetime risk of breast cancer for a woman with a BRCA mutation is as high as 70 percent, while the ovarian cancer risk can reach over 40 percent.
Resources that offer education and support to patients and families, like the Hoag Breast & Ovarian Cancer (HBOC) Prevention Program, play a critical role in navigating preventative care.
“The idea behind the program is that patients do all the imaging, blood work, therapy, nutrition counseling, mammograms—everything—all in one place,” said Dr. Lisa Abaid, who is the co-director of the HBOC Prevention Program. “It’s a unique program that is amazing for the families that need it.”
Hoag patient Elaine Miller joined the program in 2019. Her three daughters soon followed. Below are their stories.
Note: Names have been changed to protect patient identities.
Elaine Miller
When Elaine’s brother, who had been battling breast cancer, told her he was getting tested for the BRCA gene, Elaine knew she needed to get tested too. Their mother and sister had also battled the disease. Though their sister had tested negative, and their mother had passed away before she could receive the test, the prevalence of the illness throughout their family’s history was becoming difficult to ignore. After she and her brother discovered they were BRCA carriers, Elaine went in search of the best physicians, expertise and patient-centered care she could find.
“I was trying to digest and accept the news,” she said. “And in trying to educate myself, I wasn’t getting the information I needed from other providers. That’s when my daughters recommended I go to Hoag.”
Elaine, then 63 and a mother of four, found solace as a patient of Dr. Abaid. Given her elevated risk and because ovarian cancer is extremely difficult to detect—especially in its earliest stages—Dr. Abaid advised Elaine to undergo removal of her fallopian tubes and ovaries, and to consider a hysterectomy as her first step in preventative care.
“Dr. Abaid has an incredible wealth of knowledge and goes above and beyond for her patients. She laid out all the information and research in front of me, which made the decision to do the surgery an easy one,” she said.
Since the procedure, Elaine has continued to undergo breast cancer surveillance and annual exams with Dr. Abaid, alternating between 3-D mammograms and breast MRIs every six months. “It’s the promise I made to myself because I chose not to have a preventative double mastectomy,” she said. “I want people in a similar situation to know that though it’s an unfortunate gene mutation to have, it’s not the end of the world. There is a ton of research happening, and there are doctors that care and are ready to advise you on what to do.”
Olivia Miller
Elaine’s eldest daughter, Olivia, was the first of her sisters to get tested for the BRCA mutation following her mother’s positive result. She discovered that she too was a carrier.
“It’s definitely not the situation I anticipated myself being in,” she said, “but what the physicians at Hoag’s HBOC Prevention Program have made clear to me from the beginning is that knowledge is power.”
Now 40, Olivia sees Dr. Abaid and Hoag Breast Surgeon and Gynecologist Dr. Heather Macdonald a minimum of twice a year for preventative care. Dr. Macdonald is also the Medical Director of the Hoag Early Risk Assessment (HERA) and HBOC programs. The HERA program identifies a patient’s risk for breast cancer and personalizes their surveillance and imaging plan accordingly.
Olivia and the team continue to remain aligned on next steps, including when she should undergo removal of her ovaries and fallopian tubes, “which is still down the line for me, and not something I need to make a decision on quite yet, but they’re very informed and work with me on my timeline.”
And her commute from her home in Los Angeles hasn’t been a deterrent from getting the care she needs.
“Hoag is very good at combining appointments for us and doing them all in the same day,” she said. “I do my imaging in the morning, and then I meet with the physicians an hour or two later to discuss the results. They’re very accommodating.”
For those who have just been told they too are BRCA carriers, “you’ve just won the lottery,” she said, “because now you have the power to plan for the future.”
Charlotte Miller
“As soon as I found out our mom was a carrier, I was asking how soon I could get tested for BRCA myself,” Charlotte, 38, said. “I never had any hesitancy in knowing.”
Her eagerness soon turned to shock when she tested positive for the mutation. “I had been hanging on to the odds that I didn’t have it, so when I got the call, I was pretty stunned. And the first person I thought about was my daughter.”
Charlotte began seeking guidance on preventative health measures from Dr. Abaid and Dr. Macdonald, and currently receives multiple imaging examinations every six months, including mammograms and ovarian ultrasounds.
“I’m truly blown away by the HBOC Prevention Program at Hoag,” she said. “Dr. Abaid and Dr. Macdonald are at the forefront of the latest research, clinical considerations and therapies, and they are the epitome of patient-centered care.”
With support from Dr. Abaid, Charlotte had her fallopian tubes removed during the cesarean birth of her second child and plans to remove her ovaries between the ages of 40 and 45, which is consistent with current guidelines.
As for those struggling with the decision to test for the BRCA mutation, “It’s so much better to know, especially when you have the right care,” she said. “Whenever my sisters and I discuss the latest study with Dr. Abaid and Dr. Macdonald, they offer a perfect balance of quantitative analysis, expertise and humanity. I know we are in really good hands.”
Sarah Miller
Sarah is the youngest member of her family to discover she is a BRCA carrier.
“It’s just probability,” she said. “And yes, it’s a challenging boat to be in, but my family and I are in it together, and the doctors at Hoag have been wonderful at guiding us through this process.”
At 28, she isn’t receiving the same number of screenings as her sisters, and preventative surgeries won’t come into focus until she is closer to 40, but she remains proactive when it comes to her health care.
“There are so many medical advancements and developments on the horizon and Dr. Macdonald always shares the latest with me,” she said. “The doctors I’ve been working with are thoughtful and empathetic, and their knowledge and expertise has made a difficult situation feel a lot less daunting.”
To learn more about the HBOC Prevention Program, click here. To learn more about Hoag’s Early Risk Assessment Program, click here.
