Reality TV producer Alan Blassberg has worked on TV shows ranging from “Temptation Island” and “Who Wants to Marry My Dad,” to the Emmy Award-winning documentary “America’s Deadliest Season: Alaskan Crab Fishing.” While the filming conditions on America’s Deadliest Season were often dangerous, the harshest reality for Blassberg is the toll mutations for breast cancer (often referred to as BRCA mutations) have taken on his family.
The mutations, which drastically increase cancer risk, ultimately led to the deaths of his grandmother, aunt, and sister Sammy. After his other sister, Lisa, tested positive for a BRCA 2 mutation (there are three identified BRCA mutations which disproportionately impact women and men of Ashkenazi Jewish ancestry), she and her oncologist pushed Blassberg to get tested. When the results came back positive in 2011, he decided to take action in the best way he knew how – by producing a documentary.
Together, BRCA1 and BRCA2 mutations account for about 20 to 25 percent of hereditary breast cancers and about 5 to 10 percent of all breast cancers.
The team behind his upcoming “Pink & Blue” documentary is passionate, with cancer touching all of their lives in one way or another. Executive producer Amy Byer Shainman and her sister are both BRCA 1 positive. Co-producer Marc Romeo lost his father to cancer. Blassberg’s girlfriend Stephanie Swartz, award-winning photographer and breast cancer survivor (she doesn’t have a BRCA mutation), is also an integral member of the project’s team.
In 2009, both Swartz and Blassberg’s late sister Sammy found out within two hours of one another that their cancers had recurred. No doubt the news was a heart wrenching blow to the boyfriend and brother, and this was even before he found out about his own BRCA carrier status. With the dreadful C-word so prominent in his life, it’s no wonder Blassberg decided to make a film on the subject.
Launched in late 2013, the Kickstarter fundraising campaign for the Pink & Blue documentary raised an incredible $75,000 within the first month. Swartz reminisced, “It was awesome! We didn’t think we would reach our goal, but we did. It was a crazy countdown at the end. We reached our goal in the last hour before the Kickstarter deadline.”
A year and a half later, as the project nears completion, Alan Blassberg hopes to shatter some of the most pervasive myths about breast cancer, BRCA mutations, and cancer in general.
The movie’s title, Pink & Blue, speaks to one of its main goals: To raise awareness that despite the overwhelming “pinkness” of the breast cancer world, men inherit these mutations just as often as women do. A parent (mother or father) with an inherited mutation has a 50 percent chance of passing it to each offspring, whether the baby is a girl or a boy.
“Many people think you can only get it from the mother’s side, and that only females can have the mutation,” Blassberg explained. But that’s simply not the case.
When men enter cancer centers, they’re often overwhelmed with messaging geared at women. This messaging perpetuates misconceptions and stigma that can ultimately lead to poor outcomes for men. While men with BRCA mutations have a relatively low 1.2 percent risk of contracting breast cancer with a BRCA 1 mutation and 6.8 percent for BRCA 2, this is much higher than the average male, who has only a 0.1 percent lifetime chance. Men are also at elevated risk of prostate and ocular cancer. Men with inherited BRCA mutations are also more likely to die from pancreatic and colon cancers, and melanoma. Often, by the time these men seek treatment, the cancer has already metastasized. In addition, men with these mutations must be aware that their children are at risk. The film seeks to help the blue side of these issues emerge among an overwhelming sea of pink.
But pink and blue myths aren’t the only misconceptions the film will target. When asked about the biggest misinformation mongers in the cancer arena, Blassberg named a fellow BRCA mutation carrier and also a cancer victim (the filmmaker has never had cancer), who also happens to be an international rockstar.
“As far as human quacks go, Melissa Etheridge takes the cake,” he said.
This refers to Etheridge’s controversial statements about her own breast cancer and BRCA mutation in a 2014 AARP Magazine feature, in which she stated (among other quack comments) that “genes can be turned on or off. I turned my gene on with my very poor diet.”
Blassberg vehemently disagrees, explaining the he only wishes that these mutations could be “shut off” with diet. If they could, his grandmother, aunt, and sister would still be here today. “Living a healthy existence can do wonders for people,” he said. “But you can’t trump genes.”
Indeed, the notion that one can trump deleterious genetic mutations like BRCA 1 and 2 runs rampant in the wild Internet world, but the cold hard facts are undeniable. When BRCA genes function properly, they produce proteins that help repair a specific type of DNA damage. Faulty BRCA1 and BRCA2 genes demonstrate the “two-hit” tumor suppressor carcinogenesis model, also known as the Knudson Hypothesis. Everyone inherits two copies of all twenty-two somatic chromosomes plus one sex chromosome from each parent. We get two copies of every gene, including BRCA1 and BRCA2. The likelihood of both copies sustaining deleterious mutations in the same cell (two somatic hits) is relatively low.
But when someone receives a faulty copy from one parent, he or she is born with one hit in every single cell already. All it takes is for the second copy to get mutated in just one or more cells, and suddenly cancer goes from a menacing specter to a harsh reality. It’s as if most people get to roll two dice, and rolling two 7s means a likely cancer sentence. Those born with these mutations have two dice, but one die has 7s on all sides.
There’s no trumping a rigged game. Options for those with BRCA mutations are limited, but there are proactive measures that patients can take. Although Melissa Etheridge carelessly advised against genetic testing for cancer-causing mutations, knowledge is power for carriers. And Etheridge’s advice on the matter is dangerous. Experts advise options ranging from early screening, ongoing screenings, “prophylactic” (preventative) removal of breast and or ovary tissue, and or chemoprevention drugs to reduce cancer risk. Carriers are sitting ducks without the knowledge of carrier status, and that knowledge is becoming easier and less expensive to glean. It used to cost upwards of $4000 to test for BRCA mutations, but just this spring, Color Genomics launched a panel test that screens over nineteen genes for inherited mutations that increase breast and ovarian cancer risk. The test costs just $249, which includes in-house genetic counseling.
Despite quack advice from alternative medicine and health promoters like Melissa Etheridge, Food Babe and Mike Adams claiming that food choices can prevent or cure cancer, it just isn’t true despite all the wishful thinking in the world.
“Unfortunately an apple a day won’t keep the doctor away,” Blassberg lamented. He wants to drive home the message that testing is often the best option for those at a higher risk for genetic mutations. And no rockstar or internet “expert” can make that decision for you. He explains that for those with strong family history, it’s best to speak with a genetic counselor and get the proper facts in order make informed decisions.
Blassberg has never had cancer and has remained cancer-free, though he continues to get checked regularly. He and girlfriend Swartz, who has been cancer-free for five and a half years and counting, are working feverishly with their team, getting the Pink & Blue documentary ready for a late summer or early fall release. Watch the poignant trailer below, and follow the film’s Facebook page, and Twitter feed
Kavin Senapathy is a contributor at Genetic Literacy Project, Skepchick, Grounded Parents, and other sites. She is a mother of two, science popularizer, and freelance writer in Madison, WI. Contact and follow Kavin on her science advocacy Facebook page and Twitter @ksenapathy