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Welcome to the BRCA Foundation’s Positive Perspectives -- an empowering and informative series of weekly conversations all about hereditary cancer. As part of this endeavor, we speak with survivors, "previvors," doctors, scientists, genetic counselors, and influencers, to both educate and normalize all experiences related to being a mutation carrier. We explore topics ranging from genetic testing and recovery after mastectomy, to cutting-edge therapies and prevention strategies.
Please note, some of these interviews are more scientifically dense than others and none of the information provided is intended to serve as a substitute for a conversation with your own medical practitioner. Similarly, the views and opinions expressed in this series do not represent those of the foundation, but only those of the interview subject. This series is intended to highlight the range of choices and reactions to what is an extremely personal matter.
Episode 23: For our final episode, we chat with Dr. Hani Sbitany, co-director of the UCSF Center for Reconstructive Microsurgery and director of Microsurgical Breast Reconstruction. Dr. Sbitany shares some fascinating information about new technologies that are helping to improve the experience of breast reconstruction and recovery after surgery.
Episode 22: In this episode of Positive Perspectives, we visit Sandra Frank, in her San Francisco home overlooking the Castro and Mission neighborhoods. Sandra is a BRCA2 mutation carrier and previvor who opted for a special kind of reconstructive surgery called the DIEP-flap following her preventative double mastectomy. We'll hear from Sandra about her motivations for undergoing risk-reducing surgery, and she shares deeply personal insights into her recovery process from breast reconstruction. Sandra’s story is particularly difficult, because shortly before starting a family, she and her husband discovered that they were both BRCA2 mutation carriers.
: In this episode of Positive Perspectives, we sit down with our own co-founder, Cary Cole. Apart from his philanthropy, Cary is also a successful Silicon Valley entrepreneur (and you can learn more about his other work at BRCA Foundation - Who We Are
). We talk with Cary about his personal cancer journey, his BRCA diagnosis, his personal health choices, and his motivations for launching the BRCA Foundation with his friend, and fellow BRCA-mutation carrier, Evan Goldberg.
Episode 20: For this episode of Positive Perspectives, we sit down with BRCA mutation carrier and previvor, Dr. Lisa Eli, who is the Associate Director of Translation Medicine and Diagnostics at Puma Biotechnology. Dr. Eli discusses her own journey as well as her perspective on cancer research and clinical trials in the age of big data and precision medicine.
Episode 19: In this episode of Positive Perspectives, we're on the phone with Lorrie Goldin, LCSW, who wrote a series of essays that appeared in Salon and the Washington post, navigating her personal - and for some, controversial - health care decisions after she discovered she was a carrier of a BRCA2 mutation. After consulting with experts, Lorrie decided to pursue surveillance of her breast tissue rather than choosing prophylactic mastectomy. She made this decision after having undergone a hysterectomy and oophorectomy because of an aggressive early stage gynecologic cancer. Lorrie explained to me that when she was scouring the internet for stories about BRCA positive women opting for aggressive surveillance, they were difficult to find, even though over 50% of women with BRCA2 mutations choose surveillance over surgery.
Episode 18: Dr. Ford is a medical oncologist and geneticist at Stanford, devoted to studying the genetic basis of breast and GI cancer development, treatment and prevention. Dr. Ford's research goals are to understand the role of genetic changes in cancer genes in the risk and development of common cancers. He studies the role of the BRCA1, BRCA2, p53 and CDH1 tumor suppressor genes in DNA repair, and uses techniques for high-throughput genomic analyses of cancer to identify molecular signatures for targeted therapies. Recently, his team has identified biomarker signatures of tumor DNA repair deficiencies and used these to predict patient responses in clinical trials at Stanford and nationally using "PARP inhibitors" for the treatment of women with "triple-negative" breast cancer. Dr. Ford is employing Next-Generation Sequencing to identify novel inherited germline DNA mutations in families with a predisposition to cancer. He runs the Stanford Cancer Genetics Clinic, that sees patients for genetic counseling and testing of hereditary cancer syndromes, and enters patients on clinical research protocols for prevention and early diagnosis of cancer.
Episode 17: Today we're on the phone with Alan Blassberg, who you might know from his recent documentary film: "Pink & Blue: Colors of hereditary cancer." Alan spent much of his career working in non-fiction production, but more recently, Alan has focused on working on programs that offer positive outcomes for participants and viewers. In 2004, Alan launched his own production company, First Prize Productions, and "Pink & Blue" is his feature documentary directorial debut. The film is an emotional journey that takes viewers through the lives of women and men who are dealing with BRCA mutations and hereditary cancer. In the film, Alan meets with doctors and their patients who make tough decisions on their preventative options. Alan tells the story of how hereditary cancer tore his family apart and what he has to deal with as a BRCA2 positive male, using his own perspective to help highlight the message that men carry this mutation - just like women - and that not having that information can be deadly. Even though more women - by far - are diagnosed with breast cancer, a higher percentage of men with breast cancer die from it than women. If you haven’t watched the film yet, you can rent or buy the film on iTunes. Just search for "Pink & Blue" in the movies section and remember to use an ampersand in place of the word “and” in the title.
Episode 16: In episode 16 of Positive Perspectives, we visit Dr. Linda Oberstein, an adult primary care physician in the bay area who is working to remind cancer survivors and previvors to be aware of their total heatlh - encouraging patients to pay attention to preventative care outside of the world of hereditary cancer. Dr. Oberstein joined her father’s practice in 1997, and in 2010, she and her father were part of the founding members of the Mills Peninsula Division of the Palo Alto medical foundation, where she was Chief Medical Officer for 2 and a half years. Currently, Dr. Oberstein does adult primary care in Burlingame and is the Medical Director for Senior Focus, a day program for seniors. Dr. Oberstein lost both her father and grandmother to pancreatic cancer, and although her family’s cancer was not associated with any known cancer-causing mutations, she has become personally involved in the BRCA Foundation and raising awareness around hereditary cancer and genetic testing.
Episode 15: Today we turn it over to the BRCA Foundation’s deputy director, Gail Fisher, who sits down with Raleigh Zwerin, a BRCA1 mutation previvor, who is an administrator and educator with the (San Francisco) Bay Area Teacher Training Institute. A simple DNA test of her sister’s dog triggered a chain of events leading to Raleigh’s BRCA1 discovery. She was fortunate to make the discovery while she was still healthy and had preventative options.
Episode 14: In episode 14 of Positive Perspectives, we chat with oncologist Dr. Pamela Munster in her office at UC San Francisco about her cutting edge cancer therapeutics as well as her own experience with hereditary cancer.
: In episode 13 of Positive Perspectives, we sit down with Parul Somani at Color. Parul is a young working mother, breast cancer survivor, and BRCA1 mutation carrier who graduated from MIT with an electrical engineering and computer science degree, and went on to complete an MBA from Harvard. Parul now works at Color in enterprise marketing. We first heard Parul's story when we found her blog called "New job. New baby. New cancer." in which she chronicles her battle with cancer when she was just 31 years old. Here is Parul's blog: CancerAt31
Episode 12: In this episode, we talk with Dr. Joan Brugge about her newest projects and some of her most recent discoveries. Dr. Brugge is a cancer researcher at Harvard medical school and the Dana Farber Cancer Institute who has spent her career studying how cancer starts at the level of the cell, and how those cancer cells evade the effects of chemotherapy. We grabbed a few minutes over lunch with Dr. Brugge in a small conference room at UCSF while she was visiting for the BRCA Foundation’s all-investigator meeting in late April to discuss her most cutting-edge work.
Episode 11: Othman Laraki, co-founder and CEO of Color, joins us on Positive Perspectives. Color is a genetic testing company founded in 2013 that offers a comprehensive analysis of 30 genes associated with an increased risk for the most common hereditary cancers, including BRCA1 and BRCA2, all for only $249. Recently, The BRCA Foundation partnered with Color on the Family Testing Program to offer genetic testing for first degree relatives of mutation carriers at a greatly reduced cost of just $50. Note: since the recording of this interview, Color has released a temporary $99 BRCA1 and BRCA2 test for Ovarian Cancer Awareness Month.
Episode 10: In episode 10 of Positive Perspectives, we're on the phone with Dr. David Livingston, from Harvard Medical School. For those of you interested in molecular biology, this interview is a deep dive into the biology of BRCA mutations. Dr. Livingston, along with many other researchers at Harvard, UCSF, and Stanford, is studying the events that comprise the earliest stages in the evolution of a BRCA cancer, which could help doctors eliminate these cancers at their earliest stages, reducing the incidence of the disease.
Episode 9: In episode 9 of Positive Perspectives, we sit down with Dara Kosberg, a young woman with an emotional story of the fear around testing for the BRCA mutation after having lost her mother to breast cancer at a relatively early age. This interview highlights how vividly we can recall the emotionality of genetic testing even years after the fact.
Episode 8: Alejandra Campoverdi is BRCA positive and after losing both a grandmother and great grandmother to breast cancer, she almost lost her mother to the disease, as well. Alejandra is a public figure with a unique tapestry of professional experiences. Among them, she’s a former White House aide to President Obama, and recent candidate for California’s 34th congressional district. She’s also a journalist and media executive. Alejandra gives voice to women's health issues and to marginalized communities and her story highlights important issues of access to healthcare.
Episode 7: Dr. Mindy Goldman, director of the Women's Cancer Care Program at UCSF, is an OB/GYN specializing in gynecologic care for post-menopausal women or women dealing with induced menopause following risk-reducing surgeries related to hereditary cancer. Dr. Goldman is also a member of the National Comprehensive Cancer Network (NCCN) Survivorship panel. In this episode, Dr. Goldman addresses both common gynecologic symptoms following prophylactic salpingo oophorectomy and current treatment options for survivors and previvors dealing with early menopause.
: Stanford's Dr. Allison Kurian discusses the intersection of big data and clinical care. Dr. Kurian shares how she approaches questions that can only be answered with huge datasets, how she’s working to increase access to clinically-relevant information and what she thinks are some of the biggest limitations to interacting with this “fire hose” of new data. To learn more about Dr. Kurian's work, visit Allison Kurian's Stanford profile
and to check out the BRCA tool, visit Stanford's BRCA Tool
: Our fifth positive perspective comes from Harvey Singer, and we spoke via telephone. He is a BRCA2 mutation carrier, co-founder of HIS Breast Cancer Awareness Foundation
, and author of the book, "Sir, you have breast cancer!" We discuss Harvey’s personal story of breast cancer and what it was like to interact with both social and medical communities that were not prepared for a man with breast cancer...
: Our fourth guest is Amy Byer Shainman, a BRCA mutation carrier and social media hereditary cancer awareness advocate known as "The BRCA Responder." After a close family member was diagnosed with multiple separate cancers at a young age, Amy discovered that she was BRCA positive, and opted immediately for risk-reducing surgeries. We’ll discuss her upcoming memoir, her work with the documentary "Pink and Blue: Colors of Hereditary Cancer," and her never-ending quest to spread the word and to respond. If you want to follow Amy's work and upcoming memoir, "Resurrection Lily," learn more at thebrcaresponder.blogspot.com
Episode 3: Dorene Kastelman, stage 4 ovarian cancer survivor, and advocate for hereditary cancer families, shares the story of her initial diagnosis, the ensuing months of uncertainty, and her eventual participation in a clinical trial exploring the efficacy of PARP inhibitor treatment. She also discusses how her diagnosis affected her family. Four years after her initial diagnosis, Dorene is busy enjoying a full life that includes a lot of travel and fun with her family.
Episode 2: Lauren Ryan, MS., LGC, genetic counselor at Color, sat down with the BRCA Foundation to cover the basic genetics of hereditary cancer, the pipeline from spit sample to genetic report, and the wide range of reactions when some people learn about their genetic predispositions to cancer.
Episode 1: Evan Goldberg, Chairman, President and Director of the BRCA Foundation, discusses his motivation for launching a 21st century hereditary cancer foundation, and how the BRCA Foundation is well-positioned to incorporate the power of big data into cancer research.