13 Things That Jewish People Should Know About Hereditary Breast and Ovarian Cancer

Before I was diagnosed with breast cancer at age 33, cancer was not on my radar. Despite the fact that my paternal grandmother had died young of so-called “abdominal cancer,” none of my health care providers indicated that I might be at high risk for cancer. My health care team treated my diagnosis of young-onset breast cancer like a lightning bolt out of the sky. It wasn’t until after my initial treatment (a unilateral mastectomy) that I read a magazine article and learned of several significant red flags for an inherited BRCA mutation. After reading the article I became concerned that my cancer might be hereditary. The article talked about the link between young-onset breast cancer (like mine!) and ovarian cancer (which my grandmother likely had) and BRCA mutations. It also mentioned the relevance of a family’s health history on the paternal side (in my case the only cancer in my family was on my father’s side). No doctor had ever expressed interest in the cancer on my father’s side of the family. Perhaps the detail that was most surprising to me was the high prevalence of BRCA mutations in people of Easter European Jewish descent. All of the factors mentioned in the article which raised the suspicion of a mutation applied to my situation. Had I known this information before my mastectomy, I would have pursued genetic counseling and testing and made different surgical decisions at the time of my diagnosis.

Even now, 16 years after my diagnosis, as I give presentations on hereditary cancer, I still frequently meet Jewish people who have no idea of the high prevalence of BRCA mutations in this community. Most Jewish people are aware of the dangers of Tay-Sachs disease, another genetic disorder which is also prevalent in Jewish populations. Yet there are still many people who are Jewish and have a family history of cancer who have never heard of BRCA mutations and are unaware of the availability of genetic counseling and testing. Learning about BRCA   almost a year after my initial diagnosis of breast cancer was eye-opening. I learned the importance of people doing their own researching and advocating when it comes to health care decisions.

In keeping with our “13 Things” theme during 2012, I present my list of what Jewish people should know about hereditary breast and ovarian cancer, with the hope that this list will be spread far and wide beyond the FORCE community in order to save lives.

1. BRCA mutations have been found in people of every ethnicity. But people of Eastern European Jewish ancestry have the highest known incidence of BRCA mutations, and hereditary breast and ovarian cancer.
2. About 1 in 40 people of Jewish decent have a BRCA mutation, about 10-fold higher than other populations.
3. Women with a BRCA mutation have up to an 85% lifetime risk for breast cancer and a 50% lifetime risk for ovarian cancer.
4. About 40% of Jewish women with ovarian/fallopian tube cancer and 20% who have premenopausal breast cancer have a BRCA mutation.
5. BRCA mutations are associated with increased risk for several types of cancer, including breast (both male and female), ovarian, fallopian tube, primary peritoneal, pancreatic, melanoma, and prostate .
6. Each child of an affected parent has a 50% chance of inheriting a BRCA mutation.
7. BRCA mutations can be passed down equally from fathers or mothers to sons or daughters.
8. Beginning at age 40, men with BRCA mutations should discuss with their doctor the benefits, limitations and risks of prostate screening. Preliminary research suggests that prostate cancer in men with a BRCA mutation may be more aggressive than prostate cancer in men who do not have a BRCA mutation. Men with BRCA mutations are at risk for melanoma, male breast and pancreatic cancer as well.
9. People who test positive for a BRCA mutation have options to lower their risk for cancer or detect it at an earlier, more treatable stage.
10. The majority of BRCA mutations in Jewish people occur in one of three genetic sites. Genetic testing usually begins with a Multisite 3 panel that looks for these common mutations and is less expensive than full BRCA testing.
11. In couples where both individuals have a BRCA2 mutation, it is possible for children to inherit a rare and deadly disease known as Fanconi Anemia, which is more common in people of Jewish descent. Couples concerned about this possibility should consult with a genetics expert.
12. Genetic testing for BRCA is performed from a blood sample or cheek swab.  The test itself is simple, but it is not always straightforward. Consulting with a genetic counselor is the best way to assure the correct test is ordered, results are properly interpreted and an appropriate course of action is discussed.
13. The majority of people who have a BRCA mutation or a family history of cancer are unaware of their increased risk for hereditary cancer.  Awareness is critical to saving lives.

Visit our website for more information about genetic counseling and testing. Visit our FORCE in the Jewish Community page to watch our video and learn about ways you can help raise awareness about BRCA in Jewish people.

13 Facts that Men with Hereditary Cancer Risk Should Know

As we approach Father’s Day we would like to call attention to an often forgotten group: men who have a BRCA mutation or a family history of hereditary cancer. Although men don’t get ovarian cancer and their risk for breast cancer is very low, we are learning more and more about how hereditary cancer risk affects them.

FORCE responded to the United States Preventive Services Task Force’s (USPSTF) preliminary guidelines that recommended against prostate cancer screening for all men. Based on emerging research, we encouraged the panel to revise the text to state that the guidelines did not apply to men with BRCA mutations. The USPSTF incorporated our suggestion into its final guidelines. Accomplishments like these remind us how important FORCE’s advocacy work is. Men with BRCA mutations are important cancer stakeholders. Our goal is to assure that they have a voice advocating for their concerns when government cancer policies are developed.

In keeping with our 13 Things theme and in honor of high-risk men, here are 13 facts men need to know about hereditary breast and ovarian cancer.

1. Men with BRCA mutations have increased risk for breast and prostate cancer, and like women with mutations, their risk for pancreatic cancer and melanoma is also elevated. Men with BRCA2 mutations have greater risk than men with BRCA1 mutations.
2. Although men with BRCA mutations have a greater cancer risk than men in the general population, their risk for cancer is lower than most women with a mutation.
3. Because preliminary research suggests that hereditary prostate cancer tends to be a more aggressive form of the disease, the USPSTF advises that screening guidelines developed for men in the general population should not be applied to men with mutations.
4. BRCA mutations have been found in people of every ethnicity, but not with the same frequency. About 1 in every 300 to 500 people carry a BRCA mutation. About 1 in 40 people of Ashkenazi Jewish descent have a mutation.
5. Breast screening recommendations for men with a mutation include regular breast self exams and twice yearly clinical exams by a medical professional beginning at age 35. A baseline mammogram is recommended at age 40 and annual mammograms thereafter are advised, depending on the baseline results.
6. Men with mutations or hereditary cancer in the family should discuss with their doctor the benefits, limitations, and risks of prostate screening using PSA and digital-rectal exam beginning at age 40.
7. The international IMPACT study is looking at the benefit of PSA screening in men with and without BRCA mutations. Full results from this research will be available in 2020.
8. BRCA mutations can be passed down equally from either parent to sons or daughters.
9. When both parents have a BRCA2 mutation, their children may inherit a rare and deadly disease known as Fanconi Anemia. This is more common in people of Jewish descent. Couples concerned about this possibility should consult with a genetics expert.
10. Couples who are concerned about passing a mutation to their children may want to speak with a fertility expert about in vitro fertilization and preimplantation genetic diagnosis that screens embryos for BRCA mutations.
11. Early research on PARP inhibitors for treatment of prostate cancer has been promising. Currently, some open PARP inhibitor studies are enrolling men with advanced prostate cancer.
12. Coverage for BRCA testing in men can vary depending on their insurance plan. A genetic counselor can help men determine if their insurance will cover testing.
13. Men who are concerned that the cancer in their family may be hereditary should consult with a genetics expert before pursuing genetic testing. FORCE can provide information on locating genetics specialists. Genetics consultations are typically covered by insurance.

If you are a man with a BRCA mutation or hereditary cancer in your family, please complete our survey for high-risk men, read about our advocacy efforts on behalf of the men in our community, visit our expert-reviewed information section for men, and join our mailing list to stay updated on new information, research, and programs specific to men with BRCA mutations. Please consider participating in this telephone focus group research study for high risk men.

FORCE helped unite and organize the female hereditary cancer previvor and survivor populations to advocate for more resources; we need to do the same for the men in our community. If you have high-risk men in your life, please let them know about these resources. Please help us raise awareness, spread the word, and save lives by sharing this blog, and printing and sharing our “13 Things Men Need to Know” flier.

13 Reasons to Attend the Joining FORCEs Against Hereditary Cancer Conference

Registration is now open for our 7^th annual Joining FORCEs Against Hereditary Cancer conference. The excitement is building as planning progresses for this amazing and unique event. As Course Director, I think the conference is incredible; as a participant, this is the conference that I personally enjoy the most and gain the most from attending. In keeping with our “13 Things” theme for 2012, below are 13 good reasons why you should not miss this year’s event.

 1.  We have something for everyone. Clear explanations about the science of hereditary cancer make research and medical options understandable and accessible to everyone. From explanations about basic science, statistics, and cancer to presentations on new research discoveries, the conference offers a range of information that is relevant to people with and without advanced science training.

2.  The largest annual gathering by and for the hereditary cancer community. Be a part of this landmark event.

3.  Our conference is organized to help you find the information you need the most. Conference content is aligned into tracks with sessions that are focused on all aspects of hereditary cancer.  You will find informative and inspiring sessions whether you are a survivor or previvor, you are newly diagnosed or years out from treatment or preventive surgeries. Detailed and specific information will address:

• newly diagnosed breast and ovarian cancer survivors
• long-term cancer survivors
• people still in treatment for cancer
• people who just learned they carry a mutation
• previvors
• spouses, partners, and caregivers
• people considering whether or not to have genetic testing
• men with mutations
• patient advocates
• genetic counselors
• people interested in surveillance for breast, ovarian, and pancreatic cancer
• women who are considering prophylactic mastectomy (with or without reconstruction)
• women who are considering prophylactic oophorectomy
• women who have had prophylactic surgery
• women who have undergone early menopause

4.  Medical and psychosocial resources and support. The information you gain will support decision-making and provide information about your legal rights that will help you navigate the medical and insurance systems.

5.  We bring researchers to you. You will have an opportunity to hear the latest research findings regarding detection, prevention and treatment, presented first-hand by the researchers themselves.

6.  Unprecedented networking opportunities. The conference offers plenty of time and opportunity to network with others based on your personal circumstances and geographic location.

7.  Benefit from the experience of others. Meet, chat, and bond with hundreds of others who share your concerns. Hear the poignant personal stories of people just like you who have faced hereditary cancer. Talk face-to-face with your virtual friends who have supported you on Facebook or the FORCE message boards. Our after-hours events are social gatherings that provide opportunities to share in relaxed and intimate settings.

8.  Information and support to help you make decisions about surgery and reconstruction. If you are considering your surgical options, talk to plastic surgeons and women with every type of reconstruction (and no reconstruction). Attend our “Show and Tell” session.

9.  Support for communicating genetic information to family members. Learn how to discuss sensitive issues with relatives, spouses, and adult and minor children.

10.  Enroll in research. On-site enrollment for studies that will offer better answers for the future allows participants to help make a difference.

11.  Meet one-on-one with the world’s hereditary cancer experts. Where else would you have an opportunity to ask personal questions about hereditary cancer, risk, treatment, surgery, and menopause of world experts?

12.  Bond with family members. Sharing the conference with family members is a unique bonding experience that will help them better understand the issues that you face, their own risk for cancer, and management options.

13.  Enjoy the venue experience. Centrally located in Orlando, our conference hotel offers many indoor and outdoor activities and sports – including lighted tennis courts and three full Jack Nicklaus golf courses – with proximity to all the major theme parks. The conference offers great food, relaxation, opportunities to decompress, express yourself, and play.

Visit our conference website to watch our conference video, download and print our brochure, view our agenda and speaker list, or read our Frequently Asked Questions for more information.

Advocating for Men: Responding to the USPSTF Recommendations against PSA

I am concerned both on a professional and personal level about the United States Preventive Services Task Force (USPSTF) recent draft guidelines that recommend against PSA screening for men of average risk or who are high risk by virtue of a family history of cancer. FORCE has prepared a position statement in response to this draft and we are encouraging our members to read our statement and submit commentary to the USPSTF.

My father died of prostate cancer. No matter how much I told him about BRCA, the hereditary cancer link, and his own risk for cancer, he ignored his health and refused to get checked. When he developed a severe case of pneumonia that put him in the hospital, he had his first physical exam and blood work in 35 years. His PSA was elevated. Only after he had serious symptoms did he finally agree to a biopsy; by then the prostate cancer was advanced. It took his life the following year. I have two brothers and worry about them. Like most parents with a BRCA mutation, I also worry about whether or not I passed my mutation on to my son.

Although it is true that men with mutations do not have the same extraordinary high risk as women with mutations, men do have a very elevated lifetime risk, as high as 33%. Like other cancers in mutation carriers, BRCA-associated prostate cancers are different than sporadic prostate cancers. In men without mutations, prostate cancers are often slow in onset, asymptomatic, and may never progress or affect quality-of-life or lifespan. Recent research, however, shows that men with BRCA2 mutations who develop prostate cancer are more likely to develop cancer at a younger age, have an aggressive form, and die of the disease compared to those in the general population. So guidelines for prostate cancer screening for the general population may not apply to those with mutations. The ongoing IMPACT study, an international collaboration, is looking at whether PSA can improve detection of prostate cancer and survival in mutation carriers.

In drafting their latest recommendations, the United States Preventive Services Task Force (USPSTF) did not take into account any of the published studies that relate specifically to men with mutations. FORCE plans to submit our position statement to the USPSTF, strongly urging that the guidelines be revised to clarify that they are not meant for men who have a BRCA mutation or a high likelihood of carrying a mutation. Please read our full position statement on the guidelines. The USPSTF  is accepting public comments on the proposed guidelines until November 10. We have a chance to influence the final recommendation so that it takes into account high-risk men with mutations. Let’s advocate for the men in our community and help save lives!

If you are a man with a BRCA mutation and you are interested in participating, visit the IMPACT study website.