What's next after a positive BRCA test? North Syracuse mom shares journey

'Men and women should consider testing for the BRCA gene'

NORTH SYRACUSE (WSYR-TV) - Watching her mother and aunt both battle breast cancer at young ages, 28 and 31, respectively, Jill Smith knew she had to do something to find out more about her risk for cancer.

Smith, of North Syracuse, decided to get tested for the BRCA gene when she was 32 years old. As an only child, she says it was important for her to know her risk.

The BRCA gene test is a blood test that uses DNA analysis to identify harmful changes or mutations in either one of the two breast cancer susceptibility genes.

Smith's test was positive. A positive result for a mutation of one of the BRCA genes means Smith has a higher risk of developing breast and also ovarian cancer in her lifetime.

According to the Center for Disease Control and Prevention, about 3 percent of breast cancers and 10 percent of ovarian cancers result from inherited mutations in the BRCA1 and BRCA2 genes that are passed on in families.

"If there's any male breast cancer...it's really important for people to know that the BRCA gene mutation affects both men and women," Smith said. "If men have it, they can pass that gene on to their daughters and their daughters will be at risk for breast cancer, ovarian cancer and some other cancers."

As a wife and mother of four children, Smith says the test was important to her.

"Just having four children, them depending on me," Smith shared. "I just didn't want to take the risk."

Smith's mother and aunt not only battled breast cancer once, but twice.

Her mother, Susan Kelley, did not die due to breast cancer, but after a fight with lung cancer and multiple brain tumors. She was only 47 years old.

"She unfortunately passed away before Syracuse started talking about BRCA gene testing or BRCA genetic testing," Kelley shared. "That's why I decided to get tested because I have a family. I didn't want to get cancer. I didn't want my children to watch me go through cancer and treatment how I did with my mom."

After Smith tested positive, she decided to take action. 

"I had a prophylactic bilateral mastectomy with reconstruction to reduce my risks of breast cancer," Smith shared. "A couple years later, I had the prophylactic surgery and had my ovaries and fallopian tubes removed to decrease my chance of ovarian cancer."

Smith says she knew it would be a difficult time undergoing the surgeries, but in the end -- it was the right decision.

"Everyone's different. There are different choices," Smith said. "You can choose surveillance and then you would go every six months, get MRI, mammogram. The problem is there's no real test for ovarian cancer."

Currently, the two tests used most often to screen for ovarian cancer are transvaginal ultrasound (TVUS) and the CA-125 blood test, according to the American Cancer Society.

Even with support from her husband, Frank, and her family -- Smith says she needed to talk to other men and women who have tested BRCA positive and others who tested positive for other gene mutations.

With the help of Hope for Heather Ovarian Cancer Awareness, Smith helped launch Positively BRCA this past January.

"Going through these stages together -- when do we tell our kids," Smith says. "What do we tell our kids? A lot of it's trial and error too. I feel like I made these decisions for my daughter, so that we can see what works and doesn't work to prevent cancer."

Smith says this is an emotional journey because it's possible group members "don't have cancer and these are big decisions to make especially at young ages." 

When her children get older, Smith says she will have more conversations with them about BRCA gene testing. Although she will encourage them to get tested, she says it will be a choice each of them will have to make.

Positively BRCA meets on the third Thursday of each month from 6 to 8 p.m. at the Maplewood Suites Extended Stay in Liverpool.

The meetings are free to attend for anyone who has questions or concerns, and wants to provide support to others.

Learn more about Positively BRCA by visiting the Facebook page.


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