What men should know about hereditary breast cancer

Cancer kept Angel Moses busy. Before even completing the five-year treatment for breast cancer after she was diagnosed in 2003, the disease recurred in the original breast and a new cancer developed in the other.

The Chicago resident first found she had the disease when she was just 38. Her age and the occurrence of her second cancer were factors that suggested Moses had hereditary breast cancer. She opted for testing and discovered that she did indeed carry a so-called Jewish gene mutation — BRCA2 — which dramatically increased her risk for both breast and ovarian cancer.

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How One Orthodox Jewish Community in Detroit Raised Awareness about Breast Cancer Screening

Having grown up within the Orthodox Jewish enclave of Midwood in Brooklyn, Rifky Tkatch, a social psychologist, knew that many in her community did not like to talk about cancer.

Yet it wasn’t until she conducted focus group interviews with Orthodox Jewish women in Detroit in 2011 that she uncovered barriers to screening that stunned her. Many participants believed that God was more likely to perform a miracle related to a disease that had not been diagnosed. Once a disease, such as cancer, was detected, they said, the likelihood of a miracle healing was significantly reduced.

Read more at The Jewish Daily Forward

Genetics Lab Refuses To Share Data That Could Save Lives

Myriad Genetics may have lost its singular hold on the market for BRCA1 and BRCA2 testing in May 2013 when the Supreme Court ruled against the patenting of genes, but few outside the science and medical communities are aware that Myriad continues to possess a repository of patient data from BRCA testing that it does not share with researchers outside its own lab.

After testing for a genetic mutation related to BRCA, some people — around 3 to 7% of cases — receive the result “variant of uncertain significance.” This indicates that the lab found a genetic change that may be linked to cancer risks but was unable to determine whether the gene change is a “deleterious change,” which increases the risk for cancer, or a variant that does not. Until the Supreme Court ruling which allowed other labs to begin conducting BRCA testing, Myriad had been for 16 years the sole commercial provider in the United States collecting those variants, which are important tools for interpreting results. It stopped contributing those results to the public database Breast Information Core, the largest database for BRCA mutations, in 2004.

Read more at The Jewish Daily Forward.

Why millions of women may soon pay out of pocket for breast cancer screenings.

A coalition of politicians from both sides of the aisle are deeply concerned about new recommendations for breast cancer screening. They, along with patient advocates, say the new guidelines from the United States Preventive Services Task Force will fail to protect populations with a hereditary predisposition, including Ashkenazim, one of the groups at higher risk for the BRCA 1 and 2 genetic mutations linked to breast, ovarian and other cancers.

Read more at the Jewish Daily Forward

Should All Ashkenazi Women Get Tested for BRCA Gene Mutations?

No family history of cancer? Get tested anyway suggests a recently published study, but medical experts are deeply divided. 

The study indicates that even Ashkenazi women with no family history of the disease but who test positive for a cancer-causing genetic mutation have high rates of breast and ovarian cancer.

At the heart of the dispute is the question of whether all women of Ashkenazi Jewish descent should now get genetic testing to determine if they have the mutations of the BRCA1 or BRCA2 gene. And, if they do get tested, what should they do if the results show mutations?

Read more in the Jewish Daily Forward

How Angelina Jolie Changed Things for People With BRCA Mutations

"I can tell my children that they don’t need to fear they will lose me to breast cancer,” said actress Angelina Jolie last May when she announced that she underwent a preventive double mastectomy. Describing her pervasive family history of breast and ovarian cancer in a New York Times op-ed, Jolie said that she had inherited a faulty BRCA1 gene, which significantly increased her cancer risk.

A month later, the U.S. Supreme Court ruled against gene patenting, effectively breaking the monopoly one laboratory, Myriad Genetics, held on testing for genetic mutations in two genes, BRCA1 and BRCA2. These events have had far-reaching and troubling implications, say experts in the field. While the interest level in learning about hereditary cancer has increased, there is still a lot of ignorance and confusion about risk factors, which could potentially lead women to undergo unnecessary surgery.
 

Read more in the Jewish Daily Forward

BRCA 'Jewish' Cancer Gene Mutations Often Go Untested — At Deadly Cost

When Marcia Watson-Levy was diagnosed with breast cancer in 1997 at age 58, she suspected that heredity played a role: Her sister Rhoda had died of breast cancer 12 years before, at 52. 

Yet Watson-Levy, who then lived in San Francisco, said that none of her physicians — her primary doctor, her surgeon or her oncologist — suggested during the years of her treatment that she be tested for a mutation in the BRCA1 gene, which carries a 50 to 70% lifetime risk of developing the disease, or a BRCA2 mutation, linked to a 40 to 60% risk. Watson-Levy knew about the screening test for the BRCA mutations, then a couple of years old, but she didn’t push for it. “I assumed that I was probably positive and I didn’t see the need to initiate it myself,” she said. Adding to the likelihood that she carried a mutation was Watson-Levy’s heritage. One in 40 Ashkenazi Jews (about 2.5%) carries a BRCA mutation, compared to 1 in 300 to 500 in the general population (less than 1%).

Read more: The Jewish Daily Forward 

Delays Plague Breast and Ovarian Cancer Research

Regulatory hurdles, along with dosing problems, have come to plague a new class of cancer drugs that showed highly encouraging results in early research. Those obstacles have frustrated breast and ovarian cancer patients who are carriers of cancer-causing mutations, particularly prevalent among Ashkenazi Jews, and for whom it was hoped the medicines would prove especially helpful.

Read more: The Jewish Daily Forward

Therapy Shows Promise in Trials for Hereditary Cancer Patients

An emerging therapy that attacks cancer cells continues to show promise, most recently in two international studies on women who have breast and ovarian cancer and are carriers of cancer-causing mutations particularly prevalent among Ashkenazi Jews.

Read more: The Jewish Daily Forward

With Ovarian Cancer, Awareness Can Be a Key

Standing among shutterbug tourists and lunching Wall Streeters, Judith Gordon may have looked unremarkable in a black shirt and khaki shorts, but her very presence must be considered exceedingly remarkable: She is an eight-year survivor of ovarian cancer who is disease free.

Read more: The New York Sun

A diagnosis that need no longer be hopeless

THE EDGES of the leaves are browning, and I've shuddered in the season's first rude wind. It's around this time of year I remember my mother's closest friend Marilyn, who died nine years ago of ovarian cancer at 57. 

Read more: Bergen Record

Can Testing Ever Be a Mistake?

Even when given the option of free or low-cost genetic testing, there are some who have consciously decided against it out of fear that the results could lead to discrimination from insurance companies or employers. 

Are such fears warranted?

According to Noah Kauff, a geneticist at the Memorial Sloan-Kettering Cancer Center, they are not.

Of the more than 100,000 individuals who have been tested for the BRAC 1 and BRAC 2 breast cancer mutations nationwide, he said that “there is not a single well-documented case of discrimination occurring in health insurance or employment.”

Read more: The Jewish Daily Forward

Experts: Testing for Breast and Ovarian Cancers Still Lags

When Wendy Mailman’s mother, Eloyce, was diagnosed with ovarian cancer last February, her concerned daughter immediately began scouring the Internet for information.

Through medical sites and an ovarian cancer listserv, Mailman learned that women of Eastern European Jewish descent were at an increased risk for inheriting a predisposition for both breast and ovarian cancer. One out of 40 individuals of Ashkenazic Jewish descent is at risk. That risk, Mailman found, could be detected through testing for two genetic mutations, the so-called BRCA 1 and BRCA 2.

Read more: The Jewish Daily Forward  

Image: Niki K