Author and Breast Cancer “Previvor” Ali Rogin on How Progress in Precision Medicine Empowers Patients to Make Informed Decisions
In this episode and in honor of Breast Cancer Awareness Month, we speak with Ali Rogin, author of Beat Breast Cancer Like a Boss and award-winning producer of PBS NewsHour. Ali is what is commonly known as a breast cancer previvor, someone who knows they have a mutation that may lead to cancer and takes preventative steps to avoid a diagnosis.
With the growth of genetic testing and precision medicine and the ability to isolate genes that can lead to cancer, more and more people may fall into the category of previvors. For instance, women that have the BRCA 1 or 2 mutation, as Rogin does, have a 70% chance of developing breast cancer by the age of 80. Rogin says progress in precision medicine has given these women options they would never have had before, enabling them to make proactive, informed decisions about their future health.
For Rogin, this progress may have saved her life. Rogin’s family history of breast cancer and early genetic testing that showed she has an inherited BRCA mutation led her to have a double mastectomy after graduating from college and before joining the workforce.
Since then, she has worked to give voice to other breast cancer patients and previvors. Rogin’s book underscores the personal journey of these men and women and reminds everyone involved in cancer care that those who are predisposed to breast cancer do not always feel like survivors or warriors in a battle against the disease.
With the exponential growth of precision medicine and advanced diagnostics, Rogin believes women and men with a predisposition toward cancer have a unique opportunity to make proactive decisions, and she encourages them to do so.
According to the American Cancer Society, 5 to 10% of breast cancers are thought to be hereditary. And the mutations of BRCA1 and 2 are the most common hereditary risk factor for breast and ovarian cancer in men. They also increase the risk of breast and prostate cancer in men. Knowing she had inherited genes that put her at risk for both breast and ovarian cancer gave Rogin the information she needed to make early decisions. She says of prophylactic surgery, “…as soon as I left that doctor's office, I said, "Well, of course I'm going to do that." Not because it's the right choice for everybody, but for me it was a big—figuratively and literally—a big weight off my chest to know that I had options to basically get cancer before cancer got me.” This experience is also what led Rogin to write her book.
One of her biggest takeaways is that, while everyone makes different choices based on the outcome of genetic testing, having the information provides them with more options than they might have without them. She says, “The first thing I would advise is get the test…There are lots and lots of places that will help you pay for a BRCA test if you are a candidate. And of course there are more and more, as Jerome mentioned, all different kinds of mutations we're learning about every day.
So, it's not just about BRCA anymore. If you have a family history of breast and ovarian cancer, it's very, very possible that you may have another genetic mutation if it's not BRCA, but get the test. And then you can decide, you can make informed decisions about your health future going forward.”
It is an inspiring discussion, and one in which we also learned that Rogin is also an accomplished musician who sat in on keyboards with the Bruce Springsteen-led E Street Band. Our conversation with Rogin was both entertaining and insightful, and we encourage you to take a listen.
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About Our Guest
Producer, PBS NewsHour
Breast Cancer Previvor
Ali Rogin is a producer with the PBS NewsHour foreign affairs team, writing and reporting pieces for TV and the web. Her reports have also appeared on MSNBC, ABC, SiriusXM, and nationally-syndicated FM radio shows. Rogin is a ten-year veteran of D.C.’s political scene, covering the White House, Capitol Hill, and the State Department. She covered the 2012 presidential election, first as a campaign embed during the Republican primary, and then as part of the Obama re-election campaign press corps during the general election. During her senior year at New York University, she discovered she had the BRCA1 genetic mutation and decided to have prophylactic surgery before her graduation in 2009.
Beat Breast Cancer Like A Boss is her first book. A New Jersey native, Rogin lives with her husband in Washington, D.C.