Rockville Centre mom, 35, has breasts, ovaries removed to avoid cancers, part of growing number

Beth Gary lost her grandmother and her mother to cancer — and she is determined to break the cycle.

Once the 35-year-old Rockville Centre mother of two found she has a gene mutation that gives her a greater chance of getting cancer, Gary over the last 2½ years had two surgeries to remove her breasts, ovaries and fallopian tubes.

She has never had evidence of cancer, and she is hoping these measures will help it stay that way.

“Every day I can ensure I’m healthy is another day I'm here for my kids,” Gary said.

Experts say more women who have a family history or genetic predisposition to ovarian and breast cancer are opting to have preventive surgery, even if they have not shown any signs of the disease.

For those with certain genetic mutations, preventive mastectomies "prevent the vast majority of women from developing breast cancers,” said Dr. Arnold Baskies, chairman of the American Cancer Society’s Global Health Advisory Council. “It’s not a guarantee, but it certainly is in the over 90% range.”

Studies also have shown that removal of the ovaries and fallopian tubes can help reduce the risk of ovarian cancer in women who have specific gene mutations that put them at a higher risk for cancer, said Dr. Rebecca Stone, director of gynecologic oncology at Johns Hopkins Medicine in Baltimore.

Doctors emphasize that extensive preventive surgeries, also known as prophylactic surgeries, are generally most effective for people who are at the highest risk of developing cancer due to gene mutations. Family history also can be an important factor when considering these options, experts said.

Two of the primary gene mutations, known as BRCA 1 and BRCA 2, are found in about 1 in every 500 women in the U.S., according to the Centers for Disease Control and Prevention.

'Angelina Jolie effect' contributed to increase

The rate of prophylactic mastectomy has “increased tremendously,” according to Baskies, a surgical oncologist.

Bilateral mastectomies, in which both breasts are removed, more than doubled in people without cancer between 2005 and 2013, according to a statistical brief released in 2016 from the Rockville, Maryland-based Agency for Healthcare Research and Quality.

Another study published, in 2017 in the journal Annals of Surgery, that included women with cancer in one breast who opted to have both breasts removed showed that between 2002 and 2012, the number of women who had contralateral mastectomy increased from 3.9% to 12.7%. A contralateral mastectomy is the removal of an uninvolved breast in women with breast cancer.

Since then, experts said, preventive surgeries have continued to increase.

“It’s known as the Angelina Jolie effect,” said Baskies, referring to the actress who in 2013 went public with her own decision to have a preventive double mastectomy. Jolie’s mother had both breast and ovarian cancer. The actress said she has the BRCA gene mutation, which greatly increases the chance she could develop breast and ovarian cancer.

The revelation led to more women seeking genetic testing and considering preventive surgery, experts said.

Jolie's op-ed in The New York Times led to a "statistically significant increase" in both genetic testing and risk-reducing double mastectomies among women without a previous diagnosis of breast or ovarian cancer, according to a study published in 2018 in the journal Breast Cancer Research and Treatment.

Learning they have mutations in their BRCA1 gene, short for breast cancer 1, and BRCA2 gene are the most common reasons women might consider surgery before a cancer diagnosis, experts said.

Greater cancer risk with gene mutations

Women with BRCA1 mutations have a 65% to 80% chance of developing breast cancer in their lifetime as opposed to 12.5% of the general population, said Dr. Noah D. Kauff, chief of cancer genetics at the Northwell Health Cancer Institute.

Kauff said while the chance of getting ovarian cancer is about 1.2% in the general population, it’s 40% to 50% for women with the BRCA1 mutation.

Those with a BRCA2 mutation have a 60% to 75% chance of developing breast cancer during their lifetime, and about a 15% to 25% chance of developing ovarian cancer, Kauff said.

The child of a parent with a BRCA gene mutation has a 50% chance of having the mutation as well.

"BRCA is the gene mutation where you have to get patients to the operating room between the ages of 35 and 45," said Stone, referring to the specific risk of ovarian cancer. "There are other gene mutations where you can wait a little later, until they're in their mid- to late-40s, potentially. We're talking about the removal of an endocrine organ, which is really different than breast cancer."

The surgeries also come with risks. Younger women who have their ovaries removed can go into early menopause, which can lead to other health issues. Removing breast tissue often can cause a loss in sensation. And most women with relatively small cancers in one breast, depending on their risk, do not necessarily need to remove the other one, according to Baskies.

Stone said promising research shows that cancers might be starting in the fallopian tubes and not the ovaries. This research may eventually allow younger women to keep their ovaries so they do not have to go into early menopause.

Ovarian cancers in the family

Beth Gary found out she had the BRCA2 gene mutation about 10 years ago, after her mother was diagnosed with — and recovered from — ovarian cancer. Her sister suggested they get tested.

Her grandmother had died from ovarian cancer when Beth was just 5 years old.

“My sister is negative; I’m positive,” Gary said, recalling the first time she heard the news. “I cried and then I said, ‘Let’s make a plan.’”

She was dating her now-husband at the time and decided she would have the preventive surgery after having children. In the meantime, Gary, a former broadcast journalist and communications director with Northwell Health, said she made sure to keep up with cancer screenings and follow the advice of her doctors, who included Kauff.

Gary, who has a daughter, Callie, 5, and son, Wes, 3, had the surgery to remove her ovaries and fallopian tubes in 2021. A little more than one year later, she had a double mastectomy, and then breast reconstruction.

Gary’s mother, Fran Croughan, also had her breasts removed in 2015 after finding out she had the BRCA gene mutation, and continued regular cancer screenings. But in 2022, just a few months after Gary’s surgery, Croughan was diagnosed with pancreatic cancer. She died of complications from the disease just eight weeks later.

“That hit me like a ton of bricks,” Gary said through tears. “She was so proactive … I lost my maternal grandmother when I was 5 and now my daughter is 5 and she is going to grow up without her Nana.”

BRCA 2 increases pancreatic cancer risk

People with the BRCA 2 gene mutation have up to a 5% to 7% increased risk of getting pancreatic cancer, Kauff said.

Gary now is screened regularly for pancreatic cancer with an MRI or an endoscopy.

“I know I have to find a way to break this cycle,” she said. “I can't die in my 60s like my grandmother and my mother.”

Both Baskies and Kauff emphasized that women with the BRCA gene mutations or with breast cancer should discuss all the various treatment options with health care providers.

“This is a very individual choice," said Baskies, who pointed out that data shows there's often no medical need for women with small cancers in one breast to have either breast removed.

Kauff said there also has been an increase in people with other cancer gene mutations electing to have preventive surgery.

He said not all cancer gene mutations are associated with the same high risk of developing breast cancer as the BRCA gene mutations. People with those other mutations, which include ATM and CHEK2, should evaluate those risks with an expert before making any decision about surgery.

“Intensive screening is also a good way of preventing advanced breast cancer,” he said.

By Lisa L. Colangelo

lisa.colangelo@newsday.com@lisalcolangelo

Lisa joined Newsday as a staff writer in 2019. She previously worked at amNewYork, the New York Daily News and the Asbury Park Press covering politics, government and general assignment.