Jewish cancer gene impacts families

April Levison, left, of Chesterfield, served as a surrogate and delivered twins, a boy and a girl, for her sister-in-law, Michelle Rosch, right, after Rosch was diagnosed with breast cancer at age 27 and tested positive for the BRCA 2 gene mutation.

By Ellen Futterman, Editor

After Marilyn Levison was diagnosed with cancer, first in one breast at age 48 and then, a year and a half later, in the other, she told her doctors she wanted to undergo genetic testing.

“They didn’t think it was necessary. They said so many people get it in the second breast after the first,” says Levison, 59, of Chesterfield, a preschool teacher at United Hebrew Congregation. “So I said, ‘OK, humor me then and do it.’ ”

When the results came back, Levison found out she had tested positive for the BRCA2 gene, which significantly increases the risk of breast, ovarian and other cancers. One in 40 Ashkenazi Jews — descendants of Jews from Central and Eastern Europe — carry a BRCA1 or BRCA 2 gene mutation. That rate is nearly 10 times that of the general population, making Jews more susceptible to hereditary breast and ovarian cancer. 

That reality has touched off myriad concerns – not only about whether to be tested, but also the impact a positive result could have on an entire family. In addition, as medical technology advances, other gene mutations linked to inherited cancers are being identified, which are likely to affect future generations.

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“As soon as I learned I had tested positive for BRCA2, I called every relative I could to urge them to get tested,” says Levison, an Ashkenazic Jew. After having a double mastectomy, she had a preventive ovarian and tube removal with hysterectomy to decrease her risk of developing ovarian cancer.

Nevertheless, deciding to undergo genetic testing, even if a close relative has tested positive for a hereditary cancer gene mutation, is an extremely personal decision. Most certified genetic counselors don’t even like to test unless the person knows what he or she will do if the outcome       comes back positive.

In Levison’s case, several relatives did get tested. Some learned they, too, had the BRCA2 mutation, including Levison’s mother, now 82, who never had breast or ovarian cancer.

However, Levison’s daughter Michelle Rosch decided not to get tested then, despite her mother’s pleading. She was 22 at the time, in a serious relationship and “didn’t really want to deal with (testing) then,” Rosch says. “I said, ‘Mom, I promise, I’ll get tested eventually.’ I just wanted to wait until after I had children.”

Five years later, Rosch was diagnosed with Stage 3A breast cancer. Like her mother and grandmother, she, too, had the BRCA2 gene mutation. She was 27 years old and eight months pregnant with her first child.

It’s in your genes

Although BRCA mutations were first identified in the 1990s, these “Jewish breast cancer genes” made international headlines when, a year ago to this day (May 14), actress Angelina Jolie announced in the New York Times that she had undergone a double mastectomy because she had tested positive for a “faulty” BRCA1 gene. She explained that her decision dropped her chances of developing breast cancer to under 5 percent from 87 percent. 

Jolie underwent genetic testing in the first place because her mother was diagnosed with ovarian cancer in her 40s and died from it at 56. That piece of information was critical: The fact that her mother was diagnosed with ovarian cancer at a relatively young age. 

Jen Ivanovich, a genetic counselor at the Washington University School of Medicine, stresses the importance of knowing the medical history on both sides of your family.

“The greatest predictor of risk is a family history of cancer,” said Ivanovich, referring not only to breast and ovarian cancer, but to other hereditary cancers such as colon, pancreatic and melanoma.

When Lynne Kipnis’ sister was diagnosed in 1996 with breast cancer at the age of 37, Kipnis knew that increased her own risk. 

“But since there was no known family history except for a maternal grandmother who died of breast cancer in her late 70s, everyone was dismissive,” says Kipnis, 58, of Clayton, who is of Ashkenazic Jewish ancestry. “Nothing about my ethnicity, my religion, came up.”

A few years later, Kipnis’ mother was diagnosed with breast cancer but did not test positive for the BRCA gene mutation. The next year she developed ovarian cancer.

“So the assumption now is that she had a gene mutation that had not yet been identified,” says Kipnis, a clinical psychologist.

With her sister, mother and grandmother all having had breast cancer, Kipnis didn’t want to take any chances or play a waiting game. So she had a preventive bilateral mastectomy in 2000. A year later, she had a hysterectomy and an oophorectomy (removal of the ovaries). By doing so, doctors say, she reduced her risk of getting breast and ovarian cancer to less than 10 percent.

“This isn’t the best decision for everyone, but it was the best decision for me,” Kipnis says. “I didn’t need my breasts. I didn’t need my uterus. I had had my children. I’m not being cavalier,  but for me it was an easy decision. And I had a very supportive husband.”

A labor of love

Decisions, though, are not always easy, especially when you receive a breast cancer diagnosis at age 27 and test positive for the BRCA2 gene mutation when eight months pregnant.

“I was a hot mess,” says Michelle Rosch, who grew up in Chesterfield and now lives in Naperville, Ill.

Feeling that she had no other choice, Rosch delivered her baby at 36 weeks; thankfully, son Aiden was fine, weighing 5 pounds 10 ounces. A week later, she had a double mastectomy. Doctors then informed her she was estrogen positive, which was thought to increase the risk of the cancer returning if she had more children (much more recent studies say that is not the case).

“My doctor suggested that before chemotherapy, I consider harvesting my eggs,” Rosch says. “Honestly, I didn’t know what to do.”

She called her mother and then her brother in St. Louis. As soon as she hung up, her brother’s wife, April Levison, called to say she would carry Rosch’s next child.

“I didn’t have a sister growing up, and neither did Michelle,” says April Levison, who had delivered twin boys three months earlier, in 2008. “Michelle must have told me 100 times that I didn’t have to do this. But my husband was on board, and it was something I really wanted to do for her. There was no hesitation.”

Rosch immediately started receiving daily hormone shots to harvest her eggs, knowing she had only three weeks to finish the process before starting chemotherapy. She had chemo for the next three and a half months, then took two weeks off before starting six weeks of radiation.

“After that, I decided to give myself a birthday present and have a hysterectomy,” she says, laughing. “I wanted to get all the estrogen out of my body to prevent another breast cancer occurrence. Then, a month later, I started reconstruction on my breasts.”

Meanwhile, April Levison had another child, a boy born in 2010. The following year, she was ready to carry the fertilized embryos, which were to be transplanted into her through in vitro fertilization.

Rosch explains that she had harvested 21 embryos, all of which were tested for the BRCA2 gene mutation, at a total out-of-pocket cost of $8,000. About half of them tested positive.

“We implanted two healthy ones, then quickly found out neither of them took,” Rosch says. “I was beyond depressed. But I so wanted to have another baby, and April was like, ‘Let’s try this again.’ ”

The next time, three embryos were implanted and two survived. In June 2012, April gave birth to a set of healthy twins, a boy and a girl, for Michelle and her husband, Mike.

Although, as Rosch puts it, she is “cleaned out,” she still sees her oncologist, radiologist and surgeon every six months.

Marilyn Levison says, “From darkness came sunshine for my daughter.”

Awareness isn’t enough

Susan Merrick wishes doctors would have asked about her family history or that she would have known to tell them before she was diagnosed with Stage 3C ovarian cancer in 2011.

Although today it appears that primary care doctors and their patients are better educated about hereditary cancer risks and the criteria that may warrant genetic testing, that wasn’t — and still isn’t — always the case. A study published in April 2013 by researchers at the University of Pennsylvania showed that nearly half of 2,258 breast cancer patients at high risk of carrying BRCA mutations did not receive genetic testing recommendations from their physicians.

Merrick, 63, of Clayton, says: “My mother died of breast cancer, my uncle had melanoma twice, my sister had melanoma, and we were Ashkenazi Jews. My family doesn’t have a long history because of the Holocaust. My sister and I are first generation. But no one suggested genetic testing based on my family history.”

Merrick explains that when she first didn’t feel well, she was sent to “G.I. (gastroenterologists) doctors who thought I might have an ulcer or a bad reaction to (an antibiotic) as I got sicker by the minute.” 

Finally, a transvaginal ultrasound revealed ovarian cancer. At that point, her gynecological oncologist suggested she consider genetic testing, given her diagnosis and background.

“The minute I was diagnosed, my sister, who lives in New York, ran out and got tested,”  Merrick says. “As it turns out, we both tested positive for BRCA2.”

Merrick knows there is no going back, but she can’t help but think “what if.” What if she had been tested earlier?

“Had I known I had the BRCA gene mutation, I would have had the option to do what my sister did, which is have prophylactic surgery and basically avoid what has been a life-changer,” says Merrick, who after ovarian cancer, was diagnosed with breast cancer and had a bilateral mastectomy. 

“Thankfully now, there is more awareness,” Merrick said.

Still, Rochelle Shoretz says, awareness alone isn’t enough. In 2001, Shoretz founded Sharsheret, a national nonprofit supporting Jewish women and their families facing breast and ovarian cancer. Today, the organization educates people about hereditary cancer risks through hundreds of outreach programs, including ones on college campuses urging students to learn about their family’s medical history. 

In St. Louis, Sharsheret has partnered with Nishmah, a Jewish empowerment group for women and girls.  Nishmah is currently hiring a resource person to provide hereditary cancer support and education.

“There is much more awareness about issues relating to genetics and genomics, but there is not a correlated increase in knowledge,” says Shoretz, who is a breast cancer survivor but did not test positive for a BRCA mutation. 

“Words like ‘genetics,’ ‘BRCA, ‘hereditary cancer,’ are in our heads, but we haven’t taken the next step as a community to increase education about the implications of those issues for us and for our families.

“There has to be a joint communal effort among Jewish organizations that address health issues, health care professionals working with Jewish populations and major medical centers with genetic research centers to find meaningful ways to move the needle forward, to educate, so that the information out there becomes knowledge and a source of empowerment.”