FAQ: Hereditary Breast and Ovarian Cancer syndrome (HBOC)

1. What is HBOC?
HBOC is an inherited cancer susceptibility syndrome. The hallmarks are multiple family members with breast cancer or ovarian cancer or both, the presence of both breast and ovarian cancer in a single individual and early age of breast cancer onset.
2. What causes the majority of HBOC syndromes?
Mutations in the BRCA1 and BRCA2 genes result in HBOC syndromes. These genes are both autosomal dominant, which means an individual needs to inherit only one abnormal gene to be at risk for HBOC syndrome.
3. What percent of breast and ovarian cancers are due to BRCA1 and BRCA2 mutations?
Approximately 10 percent of ovarian cancer and 7 percent of breast cancer are due to BRCA mutations. However, only 4 percent of individuals with these mutations have been identified.
4. What is the prevalence of BRCA mutations in the general population?
It is estimated that one in 500 individuals is a carrier of the BRCA mutation.
5. What is the prevalence of the BRCA mutation in the Jewish population?
It is estimated that one in 40 Ashkenazi Jews carry the BRCA mutation.
6. What is the risk of breast and ovarian cancer if I carry a BRCA mutation?
For a woman with a BRCA1 mutation, the lifetime risk of ovarian cancer is 39 percent to 46 percent. For a woman with a BRCA2 mutation, the risk of ovarian cancer is 12 percent to 20 percent. The estimated lifetime risk of breast cancer with a BRCA1 or BRCA2 mutation is 65 percent to 74 percent.
7. How is testing for the BRCA mutation performed?
Blood is obtained at your physician’s office and then sent to a laboratory which tests for the mutations. Appropriate counseling should be performed before testing is done.
8. Does insurance cover the test and will I be able to obtain health insurance if I test positive for the BRCA mutations?
Most insurance companies will cover BRCA testing in “high-risk” individuals. High-risk is defined as individuals with personal history of breast cancer diagnoses prior to age 45 with or without family history; breast cancer diagnosed at age 50 or younger with a family history of breast cancer diagnosed by age 50, or family member diagnosed with ovarian cancer; family history of male breast cancer; Ashkenazi Jew with family history of breast or ovarian cancer.
Federal laws are in effect which prohibits medical insurance companies from discriminating against individuals who are BRCA carriers.
9. What can be done if I test positive for the BRCA mutation?
Prophylactic simple mastectomy decreases the risk of breast cancer by 90 percent. Removing both ovaries and tubes when childbearing is complete decreases risk of ovarian cancer by 96 percent and breast cancer by 68 percent. Oral contraceptives decrease ovarian cancer risk by 60 percent with no proven increase in breast cancer. Increased surveillance with breast MRIs and more frequent mammograms may be performed. Pelvic ultrasounds and CA125 markers performed every six to 12 months may be ordered.
10. How can I find out more about HBOC?
Start by contacting your physician and discussing your family history and risk factors for HBOC. In addition, Myriad Genetic Laboratories performs the test and provides patient education material on their Web site at www.myriadtests.com. Facing Our Risk of Cancer Empowered (FORCE) at www.facingourrisk.org is a resource for those individuals or families who carry the BRCA mutation.
Eric Jacoby, M.D. (ericjacoby@pwhcare.com) is an obstetrician and gynecologist in Plano.
Sharsheret aids young
Jewish women with cancer
By Josh Sayles
Jewish News of Greater Phoenix
When 28-year-old Rochelle Shoretz was diagnosed with breast cancer in 2001, she had nowhere to turn. The organizations, both Jewish and secular, that she contacted for support put her in touch with aunts and grandmothers. It wasn’t until a neighbor introduced her to another young Jewish woman going through the same difficulties that she was able to lean on someone else who truly understood what she was experiencing.
Five months later, in December 2001, Shoretz founded Sharsheret, a national organization based in Teaneck, N.J., that provides aid to young Jewish women (defined as premenopausal) with breast cancer.
The organization will hold a national teleconference, “Breast Cancer and the Next Generation,” on Nov. 4 (see info box).
About 850 women from 39 states are currently enrolled in Sharsheret’s signature service, the Link Program, and thousands more call in for free information and materials, according to Director of Operations Elana Silber.
The Link Program matches women of similar backgrounds and lifestyles from across the country so they can discuss questions and concerns with like-minded people.
“Generally by the time women with breast cancer are looking for support, they already have a medical team in place,” Silber said. “They have their oncologist, they have their surgeon. But what they’re looking for and what they’re finding in Sharsheret is a place to turn for guidance, reassurance and a sense of community within the community.”
She added that the organization is careful to match people with similar religious values and similar problems, and that Sharsheret is open to women from all denominations of Judaism.
“When you go to a doctor, their goal is to make you healthy right away, and it’s not always to protect the rest of your values,” said Amy Dubitsky, a Phoenix resident and member of Sharsheret’s national advisory board. (Amy is an account manager at the Jewish News of Greater Phoenix and the wife of Rabbi Michael Dubitsky.)
“Let’s say a woman [recovers] from breast cancer, and she’s not married yet or newly married and hasn’t had children,” Dubitsky continued. “Her oncologist isn’t necessarily thinking about fertility issues and stuff like that. Sharsheret will help you with that, or you’ll speak to other people who have been through those same things and have [similar] values.”
She gave the example of how an Orthodox woman who recently underwent a mastectomy might seek advice on how to handle herself at a mikvah.
Silber said that although its programs are geared toward young Jewish women, Sharsheret will help both Jews and non-Jews of any age. “Anyone who feels they can benefit from the program can call in,” she said. “We also refer women to other organizations if we don’t provide a service.”
In addition to the Link Program, Sharsheret offers nine other services, including education and outreach; quality of life, which addresses the cosmetic side effects of treatment; and individualized counseling regarding hereditary and genetic issues having to do with breast cancer.
The nonprofit is also in the planning stages of providing support to women with ovarian cancer, which it hopes to launch in full force in 2011, according to Silber.
For more information, call 866-474-2774 or visit sharsheret.org.
Josh Sayles is a staff writer at Jewish News of Greater Phoenix.
What: Sharsheret national teleconference: “Breast Cancer and the Next Generation”
Topics: “How do I talk to a young child about my breast cancer diagnosis?”; “How can I help my teenager during cancer treatment?”; and “What can I do to educate my young daughter about her risk of developing breast cancer?”
When: 6–7:30 p.m., Wednesday, Nov. 4
Cost: Free
Registration: 866-474-2774 or events@sharsheret.org

Leave a Reply