Why We Have To Talk About Cancer
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.
“If you know that you have something bad on a mammogram; it means not only that you have to deal with it, God’s not going to take it away,” was how one focus group participant summed it up. She was featured in an article Tkatch published in the Journal of Community Health in May 2014.
The interviews were part of Tkatch’s postdoctoral fellowship at the Barbara Ann Karmanos Cancer Institute in Detroit. Tkatch, who is 37, relocated to the city with her husband and four children when she took the position.
“My father died of cancer when I was a kid, but that was all I knew about cancer,” said Tkatch, who also believes in the concept of hidden miracles, but added that she’d “never seen it applied to the extent that it was a reason why women were not necessarily doing things they needed to do for their health.”
Tkatch was a panelist at a cancer consortium’s annual conference on education in hard-to-reach communities. After a fellow panelist spoke on the stigma of cancer among Arab Americans in Detroit, “I leaned over to my boss and said, ‘They could be talking about the Orthodox community,’” she recalled “So he said, ‘Why don’t you do something about it?’”
So Tkatch set out to uncover how certain mores might be inhibiting religious Ashkenazi women from receiving vital health care such as screenings for genetic cancer mutations — and then raise awareness through a culturally appropriate educational program.
Ashkenazi Jews are at high risk for carrying the BRCA 1 and 2 mutations associated with breast, ovarian, pancreatic, colorectal and other cancers. One in 40 carries a BRCA mutation, as compared to 1 in 345 in the general population. Orthodox Jews tend to marry among themselves, increasing the chances that the BRCA mutations will continue to be more frequent in this group than among other ethnicities. “People also keep things quiet because of shidduchim,” or arranged marriages, Tkatch said, pointing out that matchmaking, arguably an arduous process to begin with, can become more complicated when a family history of cancer factors in.
To get her research project started, Tkatch first needed to gain rabbinic approval. She partnered with Rabbi Doniel Neustadt of the Council of Orthodox Rabbis in Detroit and the Women’s Orthodox League. Neustadt, she said, was involved every step of the way, reviewing all the materials and helping to develop the educational component.
As both a health expert and member of Detroit’s community of devout Jews, Tkatch was able to recruit 30 participants for focus groups, the first part of her project, by word of mouth and by distributing flyers in the metro area.
In addition to the concept of hidden miracles, several other barriers to screening were identified, including fate and the idea of cancer as an inevitability. Some focus group participants said they were unsure if screening was an effective measure of detecting cancer early and preventing mortality. “I hate to sound so, like fateful here, but if it’s gonna hit you it’s gonna hit you,” said one.
Lack of health insurance was another factor, with several group participants suggesting that many in the community might be unaware of free screening resources. Others cited the competing demands of everyday life — caring for their large families, including cooking and making preparations for weekly Shabbes.
Armed with this information, Tkatch then sent out a mail-in survey on cancer-related health and cancer genetics knowledge to 450 women from the community. The survey’s questions aimed, in part, to identify the most comfortable and effective way to share information about healthcare and screenings. She received answers from 58% of them, which is considered an excellent response rate.
Based on the survey responses, Tkatch and her team developed a culturally sensitive health education program in the form of a Torah class. Many of the survey respondents had suggested that a kallah teacher, a bridal instructor, would be someone from whom they would feel comfortable receiving health information. So the first half of the program featured two bridal instructors who gave a class on the Torah obligation to take care of one’s health.
The second half of the program focused on cancer genetics information and screening guidelines, and featured a genetics counselor who answered questions and also left her contact information in the event some of the women wished to follow up.
The first run through of the project, which ended in December of 2014, was a success: A total of 60 women of varying ages participated in the two-hour sessions, which took place as small groups in people’s homes. Women in the community regularly ask Tkatch about repeating the program, which she hopes to do in the future.
Tessa Niemchak, the genetics counselor who spoke at these sessions, was gratified to be able to dispel certain cancer myths that are common among all patient populations. “One of them is that cancer on your father’s side of the family will not affect your risk for breast cancer, which, of course, in fact it does,” she said. Niemchak also sought to alleviate the anxiety associated with going to see a genetics counselor. “A lot of the women thought that going to a genetics counselor meant that they had to have BRCA testing and that someone was then going to tell them they had to have these major surgeries,” said Niemchak, adding, “Our role is to help you figure out if there is something you need to worry about, and then help you figure out if you even want to have testing.” Niemchak said several of the women did subsequently contact her and ultimately received genetic testing.
Attendees roundly praised the program, including Shevy Zigdon, 31, a social worker who participated with her mother. Zigdon said it was the bridge between the religious and the medical that made it so beneficial.
“I think that sometimes people in the community turn more toward their beliefs versus standard medical care,” said Zigdon, adding, “God will provide for us but we need to do our part. Our part is going for the medical screenings and asking the questions that need to be asked so that we can continue to be healthy people.”
Karen Iris Tucker is a freelance journalist who writes primarily about health, genetics and cultural politics. Finder her work at kareniristucker.contently.com, kareniristucker.com and on Twitter @kareniristucker