Author Archives: programforjewishgenetichealth
Guest Blogger, Allison Grant, reflects on the difficult decisions patients face following the identification of a BRCA mutation.
In the middle of January I began watching, or as I will shamelessly admit, re-watching, the television series, Grey’s Anatomy. After being wooed by the drama and attractive doctors during my first time watching, I was able to focus more on the “medicine” and on medical ethics the second time around. To my surprise and delight, an episode in season two, Let It Be, closely followed the case of a woman named Savvy who was found to carry a BRCA mutation. Although Savvy did not have cancer, she had seen ovarian cancer take the lives of her mother, sister, and cousin. Savvy and her husband traveled to Seattle to seek advice from their close friends and doctors, the Shepherds, and to decide whether or not to move forward with surgery. Although her husband disagreed, Savvy eventually opted to have a bilateral prophylactic mastectomy, oopherectomy, and hysterectomy (removing both breasts, ovaries, and the uterus). The decision was not made lightly, and was made only after considering all of the statistics, risks, and consulting with appropriate health care professionals, including a genetic counselor.
I applaud Shonda Rhimes for writing and producing this episode in a medically accurate way that, in my opinion, also did a great job of showcasing how a critical medical decision such as this one impacts interpersonal interactions and relationships. Different opinions, and the subsequent social and emotional interpersonal hardships that result, were presented through Savvy’s relationship with her husband, as well as with one of her doctors.
As I was watching this episode I was pained by the stress felt by Savvy, the tension that it created in her marriage, and the difficult anticipation of the life-altering surgeries she was about to endure. For a few seconds I questioned my unwavering belief that knowledge is power. If Savvy had not known about her BRCA mutation, she would not have been facing difficult decisions and these hardships (a fact that some people believe argues against genetic testing in the absence of compelling risk). But I took a step back and looked at this case from a wider perspective, and apparently so did Shonda Rhimes. Personally, I do believe that, in most situations (including this one), knowledge is power. I believe that medical education and awareness about one’s own health are critical components to leading a healthy life. To turn a blind eye when science is offering a chance to proactively enhance one’s health and life expectancy is a private choice, but one that I would argue is made out of fear and a lack of understanding of the risks that can be avoided with the benefit of crucial, and now available, medical information. This sentiment guided Savvy’s experience. After meeting with her gynecologist and genetic counselor, she became empowered to take charge of her health and made an informed decision that she felt was best. In reflecting on her decision she states, “I know what I’m losing. I get it. But think about what I’m gaining. My life. This gives me a shot.”
That is why I love my job–why I love working with professionals trained in genetics, who promote the sentiment that knowledge is power. We give people a shot.
Allison Grant is currently the study coordinator for the Program for Jewish Genetic Health‘s BRCAcommunity Study. She will be attending medical school in the fall. Learn more about BRCA testing at BRCAcommunity.com
Guest Blogger, Sherry Kabran, writes about her amazing new project, Tree of Life, A BRCA Conversation http://www.treeoflifebrca.org:
While in mourning, some try to cope with their emotions and loss by writing journals, going to support groups, blogging, running races, attending daily minyans, even starting cancer oriented organizations. The women in my family found their own ways to accept the loss of Carolyn Raizes Davis, mother and sister, but together we created Tree of Life: a BRCA Conversation guide for Passover, Shabbat and Rosh Chodesh.
Each guide helps Jews of Ashkenazi descent understand basic facts about hereditary cancer risks from BReast CAncer gene mutations. The highlighted message is that every family should create a family medical tree, look for red flags and consider genetic testing, if appropriate. The guides provide a Jewish setting in which to start a serious conversation that might save the 1 in 40 Jews of Ashkenazi descent, who unknowingly has a BRCA gene mutation.
This family project was our suggestion to FORCE (Facing Our Risk of Cancer Empowered) to further reach out to the Jewish community with a teaching tool. How could we not try to help? Carolyn passionately believed in teaching the community about BRCA gene mutation risks and worked closely with The Methodist Hospital doctors in Houston, Texas, to develop an educational program. Her legacy was EDUCATE anyone who will listen!
My younger sister, Francine, and I decided Passover was an ideal time to have a multi-generational discussion about gathering medical histories. We know about oranges and coffee beans on the Seder plate. How about a tree branch, to represent the importance of medical family trees? Each guide provides: an introduction to start the conversation, a BRCA branch symbol of family trees, a choice of videos, a medical history form to gather health information, Debbie Friedman’s Mi Sheberach prayer and suggestions for next steps.
Of course I googled “Passover & family histories” and found Chani’s post suggesting families do just that, at the Seder table! Her blog is incredibly informative and thought provoking. Plus, she told me to take the conversation guide idea and run with it. Thank you, Chani, for your encouragement.
The Davis/Raizes/Kabran family hopes readers will explore the guides (http://www.treeoflifebrca.org) and decide to use one during family gatherings. Please tell us about the experience. Also, help us save lives by sharing the website on Facebook and forwarding the free downloadable guides to family members, friends and community leaders (Jewish organizations are beginning to offer BRCA educational programs). Your suggestions for use of the guides and ways to publicize would be greatly appreciated.
Sherry Kabran: firstname.lastname@example.org
Guest Blogger, Elana Bengualid, writes about her thoughts on the “Angelina Effect“:
Angelina Jolie is one of the world’s most prominent actresses, and is also a statistic of the 1 in 500- 1 in 800 people who have an increased risk of developing breast and/or ovarian cancer due to a mutation in the BRCA1 or BRCA2 gene. Therefore, when she valiantly shared her story with the public it undoubtedly created an immediate medical and cultural phenomenon.
It is evident that Jolie has inspired many to be proactive about their genetic health as the labs that test for the hereditary breast and ovarian cancer mutations have experienced a dramatic increase in the demand of test orders since her story was published in The New York Times in May. Most notably, Jolie’s decision to undergo a double mastectomy consequently led to about 250,000 Google searches on the prophylactic surgery in just one day, greater than the amount of people who will be diagnosed with breast cancer each year. Jolie’s story is empowering for she was courageous in taking appropriate steps to decrease her risk of breast cancer from 87% to about 5%, and through her journey she was able to change the image of this somewhat daunting process by exuding confidence, and becoming a public example which others can emulate.
However, at what age should one confront this information? How will Jolie’s actions influence young men and women who have similar family histories of breast and ovarian cancer? It is important to note that genetic counselors do not normally recommend that a person get tested before the age of 25. Recommendations for screening and preventative surgeries for high risk start at the age of 25, for the patients would not be able to do anything with the information except process and share it with family a member (which is important too!).
As a summer intern for the Program for Jewish Genetic Health, I was privileged to able to shadow the genetic counselors. One of the cases I observed was counseling for a 23 year old woman whose mother had passed away from breast cancer at age 39. The patient had been waiting to get tested for the BRCA mutation since her mother’s diagnosis, four years prior. Although young for testing, the patient was mature and her determination to confront this situation with the utmost diligence was admirable. Seeing the strength with which this young woman, three years older than I, pursued genetic counseling was inspiring. She was empowered to be proactive about her health, and that unwavering resolve is a quality that everyone, no matter what the situation, can learn from.
Personally, I do feel that it is extremely important to know if an individual is a BRCA mutation carrier not only for that person’s health, but also for their family members’ health. Regardless of what is considered the “right” age by medical professionals, certain individuals may be emotionally and psychologically ready to undergo testing at an earlier age. For these young women, it is amazing to have a public figure like Angelina Jolie serve as a role model and give them someone to relate to who has already experienced this, and persevered with grace.
Elana is a summer intern for the Program for Jewish Genetic Health. She is a junior at Barnard College and is majoring in Spanish and Latin American Cultures.