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'Chain' Was Her Reaction to Early Breast Cancer

Jerusalem Post
By Judy Siegel-Itzkovich
June 23, 2002

Judy Siegel-Itzkovich writes about a US-based organization that helps and supports women who contract breast cancer at a young age

The last thing a young woman in her 20 or 30s - busy with family, home and career - expects to encounter is breast cancer. Although the lifetime risk of the disease is one in nine, the vast majority of new patients are over 50; those who are diagnosed before their 40th birthday are, fortunately, a very small minority.

According to the American Cancer Society, last year there were more than 10,000 new breast cancer cases (representing 8.3% of total cases) in American women under the age of 40 and about 1,000 of those (or 0.7% of total cases) were in women under 30.

Here, according to the Israel Cancer Registry, only about 3% of breast cancer cases are diagnosed in women under 40.

But the rarity puts those women who do contract the disease at a young age in an especially uncomfortable position. Combined with the imperative of meeting their responsibilities to their families, they are angry, confused, fearful and concerned about genetic influences and possibly lower survival rates.

It happened last year, at the age of 28, to Rochelle Shoretz, an Orthodox Jewish lawyer in New Jersey, married and the mother of two sons, Shlomo and David, now four and six years old. But instead of succumbing to depression or pessimism, Shoretz turned her personal struggle into a positive and creative effort to help other young Jewish women in her situation.

Five months ago she established a one-on-one support organization called Sharsheret ("chain" in Hebrew) to link new patients by phone with those who have already been treated and recovered.

Since Shoretz established it out of her home in Teaneck, New Jersey, Sharsheret has received over 300 phone calls from around the US - Jewish organizations, women's organizations, health care professionals and others interested in learning more about its work.

Callers are asked to describe the issues they want to discuss with Sharsheret "links," and may share general information about their medical and personal backgrounds.

A Sharsheret volunteer pairs the caller with a link who can best serve the caller's needs as she has described them.

So far, the organization has received dozens of phone calls and e-mails from young Jewish women looking for support or calling to offer support to others.

Although the vast majority of callers are Jewish, Sharsheret has also received a few from non-Jewish women, who are treated like everyone else.

But, Shoretz said in an e-mail interview, young women breast cancer victims in the general population have other sources of help, including Young Survival Coalition (for women under 40), Web site at: http://www.youngsurvivors.org and SHARE (for all women with breast cancer) at: http://www.sharecancersupport.org.

While Jewish doctors and nurses have succeeded in increasing awareness of breast cancer and encouraging early detection in their community, said Shoretz, "once it was detected, there really was no place for them to go. I had never heard of anyone getting breast cancer before 30. That's why we established our group."

Sharsheret, which has been granted official nonprofit status by the US Internal Revenue Service and established an alliance with the American Cancer Society, aims "to embrace those women who would not ordinarily turn to a general cancer organization, women who are looking to connect with other women who share their personal as well as medical background.

"Our outreach is to the entire Jewish community. We have received phone calls from women who are Orthodox, Conservative, Reform, Reconstructionist and unaffiliated. And the connections we have made have inspired cross-community friendships that may never have had the opportunity to blossom."

What special needs do Jewish women with early breast cancer have beyond those of other women in their situation? Shoretz mentions a host of issues that are uniquely Jewish.

Women who have lost their hair to chemotherapy feel very self-conscious exposing their bare heads at the ritual bath each month; others are embarrassed over having their breasts seen by mikve staffers after undergoing partial or complete mastectomies.

Haredi families in which a young woman gets breast cancer may want to hide the fact so her children will not be considered a "bad match" when they reach marriageable age.

More seriously, many Jewish women who have breast cancer at a young age are carriers of the BRCA1 or BRCA2 gene that has been linked to the disease in Ashkenazi Jewish women at higher frequency than among the general population.

"We have also begun receiving phone calls from women who have not had cancer, but tested positive for BRCA1 or BRCA2 mutations and would like to speak with other Jewish women who have completed genetic testing.

"A number of our callers," says Shoretz, "want to discuss the consequences of being a carrier, and its effect on the lives of their mothers, sisters and daughters."

Other common concerns include relationships and intimacy, pregnancy after diagnosis, child rearing, community outreach and the role of religion in daily life with cancer."

SHORETZ graduated from Manhattan's prestigious Barnard College and Columbia Law School and went on to work as a law clerk for Supreme Court Justice Ruth Bader Ginsburg. She was not only the first woman with two young children to clerk for a Supreme Court justice, but also the first Orthodox Jewish woman to do so. She thought she was on her way to a promising law career.

But then her malignancy was diagnosed, at a fairly advanced Stage II. She started a series of chemotherapy and radiation treatment that ended just a few weeks ago. Doctors put her on the drug Tamoxifen to prevent recurrence, and she will take it for five years.

"I am feeling strong," she says. "My hair has begun to grow back, my children are happy, and I am working on developing Sharsheret full time, as executive director - an unanticipated career shift."

But when she started to look for emotional support after getting the devastating diagnosis, she did not find women her age at support groups. The only thing she had in common with the others was breast cancer.

Debilitated by the effects of chemo, she suddenly woke up with the name "Sharsheret" and the idea of a support organization in her head.

"I started to feel energized just from the idea of working on something."

Shoretz and a few other American Jewish women she had met decided to establish Sharsheret to pair Jewish women in their 20s and 30s who share similar life experiences as well as diagnoses. Friends who learned that Shoretz wanted to meet other young cancer patients introduced her to Lauryn Weiser, another survivor about her age, a mother of three who had been diagnosed only a few months before Shoretz, but had a lot of experience.

One of the early links was Brocha Ruder, an American-Jewish mother of four who was diagnosed with breast cancer during her last pregnancy. She had a mastectomy while pregnant and started chemotherapy after the baby's birth was induced.

Sharsheret, which is dependent on donations, sponsors lectures and seminars for Jewish and general audiences. Shoretz has lectured on her experiences at meetings of the American Cancer Society and in synagogues and Jewish organizations in the New York-New Jersey metropolitan area. Between treatments, she took care of her home and children with her husband, hedge-fund manager Jonathan Mirsky.

Shoretz's work for Sharsheret often runs into the late-night or early-morning hours, when she goes into her e-mail account or to the offices in Hackensack, New Jersey, recently donated by IDT Corporation.

"We have begun to target physicians, ob-gyns, oncologists, radiologists, and breast surgeons whose patients may benefit from our organization," she says.

Sharsheret would be happy to receive input from young Israeli women with breast cancer, and from health professionals.

Meanwhile, Israel Cancer Association public information director Iris Fried said she had not yet heard of Sharsheret, but was very interested in learning about it.

Although there is no separate organization in Israel to provide emotional support to young victims of breast cancer, the Yad Lehahlama support group (at 1-800-360707) has a volunteer who is an expert on the subject, and groups of young breast cancer patients do have periodic meetings.

Sharsheret can be reached at P.O.B. 3245, Teaneck, NJ 07666, or at +1- 866-474-2774 and +1-201-837-8793.

Information can also be obtained by e-mail from info@sharsheret.org or from its Web site at http://www.sharsheret.org.

(This text is from an article at http://www.jpost.com.)

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