A breast cancer movie worth seeing

Truth is better than fiction. If you need proof, see the new movie Decoding Annie Parker, the story of two women who could not be deterred in their search for understanding why breast cancer strikes some families so dramatically.Researcher Mary-Claire King discovered the BRCA 1 and 2 breast cancer genes at the same time that Annie Parker was trying to get someone to believe her when she said there was more than bad luck behind the breast cancer that plagued her family. King's discovery in 1991 has saved thousands of lives and helped make sense of multiple cases of breast cancer in families like Parker's. Both women were told repeatedly that their research was pointless – King by her colleagues, who said that everyone "knew" that there was no family connection to breast cancer, and Parker, whose self-described obsession with breast cancer and family began after her mother and sister died of the disease. It hit high gear when she herself was diagnosed. Neither woman could be deterred. Neither could Steven Bernstein, the director and one of the producers of the movie, who saw in these women a story he wanted to tell. Bernstein worked for 27 years as a cinematographer and is best known for the movie Monster. But he has spent the last five years bringing the story of Annie Parker and Mary-Claire King, his directorial debut, to the screen. He, like both women, overcame considerable odds to do so. Bernstein had already heard about Parker and was reworking the screenplay she had written with her doctor when he learned about Mary-Claire King. "Here is this remarkable and heroic woman, and she decides to spend 15 years of her life with no grant or financial support on research that her colleagues said had no standing. What I saw in both these women was the common thread of survival and how we carry on when you have faith in a future."King, of course, did prove there was a gene that increased women's risk of getting breast cancer and Parker was the first woman tested in Canada in 1998 when she learned she carried the BRCA1 gene. Planning to make her story into a book, Parker met Bernstein in 2008 and offered her story for a movie. What happened next was a surprise even to Bernstein. After piecing together funding from a number of non-Hollywood investors, Bernstein found that the small film he envisioned got bigger and bigger as named actors began to sign on. Of course, that meant more money. At one point, Bernstein sold his car. The cast is sterling: Helen Hunt, Samantha Morton, Maggie Grace, Rashida Jones, Aaron Paul, Bradley Whitfield and Richard Schiff among others. The movie shot in barely three weeks' time and, according to Bernstein, even then he had to take a week off so he could raise more money. But everyone came back because they too believed in the story. When the movie was finished, Bernstein didn't just want another movie that benefitted the investors. He wanted one that would help the charities who are involved in breast cancer, so there will be screenings across the country to benefit the American Cancer Society, FORCE (Facing our Rick of Cancer Empowered), Willow Breast Cancer Support Canada, hospice organizations and Jewish organizations (the BRCA 1 and 2 genes appear more often in women of Ashkenazi Jewish descent). In real life Annie Parker and Mary-Claire King never met, but they will on April 2 at the Premier of the movie in New York City at the DGA theater at 7 p.m. To get tickets, go to the Decoding Annie Parker Facebook page. From New York the movie will be at the Palm Beach Film Festival and the Dallas Film Festival on April 9 at the Angelika. And, then, if Steven Bernstein has anything to do with it, it will be in theaters across the country. And it will need your help. Face it. This is not a movie that the general public will rush to see. We have to tell them why they should see it. Go on Facebook and leave a message for Steve Bernstein about why this movie is important to you. It will help with distribution. On another note: In the current issue of CURE you will see a feature on FORCE, the national nonprofit that works to educate women and men about hereditary breast cancer. This is an amazing group that works tirelessly to get the word out and help people with the BRCA 1 and 2 genes understand exactly what that means. I attended the conference and interviewed a number of families who talked about their family members who refused to be tested when they knew they could carry the gene. They were afraid and would rather not know. This is such stupidity. I wish they could identify what is going on in my family. I was diagnosed in 1986 at age 37 the first time, and in 2007 at 58 the second time in the other breast. My mother died of breast cancer, having been diagnosed with metastatic disease in 1991, five years after me and dying six months later at age 72. My brother had early onset prostate cancer at age 47 in 2001. When my daughter was born in 1985 none of the genetic issues had been discovered, and when they were, I can truly say I found a new anger at this disease. Not my daughter. But never did I say I didn't want to know. I wanted to know everything. I wanted all the information I could get because it's ignorance that kills. When my brother was diagnosed with prostate cancer, my daughter was in high school and I had not yet had my second diagnosis, so my fear level for the gene was low. I met Mary-Claire King at Project Lead in the late '90s and can honestly say I felt that I was in rarified air. This woman had dedicated her life to daughters like mine that they would have knowledge that would save their lives. I had decided to wait until my daughter graduated from college to be tested, at which time I felt she would be old enough to determine what to do with the information if I tested positive. But my second diagnosis in 2007 made me move that decision up one year. The test came back negative for BRCA1 and 2, but we were classified in a familial cluster. In other words something was going on but we didn't know what. Our gene has not yet been identified is the way the genetic counselor put it. Now, from research I did in for the story that appears in this issue of CURE, it appears I need to have the BART test, The BRACAnalysis Large Rearrangement Test (BART) was launched to provide a way to detect large genomic rearrangements in both BRCA1 and BRCA2 that are not identified as part of the BRACAnalysis sequencing test.This second level of the BRCA1 and 2 test is under patent by Myriad Genetics and goes deeper to look at your genetic make-up, and right now is not covered by insurance. Right now I would have to have Myriad do the test. By summer the Supreme Court may have found that one company cannot own my genes, opening up the testing to numerous other companies and bringing the price down. At that time I will have the test. If the Supreme Court rules in favor of Myriad it will be a travesty that means anyone being tested will have all of their genes identified on one panel – but BRAC1 and 2, which will require a separate, expensive test, from Myriad. By the way, Mary-Claire King receives no money for these BRCA tests. She found the gene, but Myriad was the first lab to discover how to test for the genes and locked it in. I don't know how she feels about it, but I do know she has gone on with her work in genetics not just in breast cancer but in deafness and in helping to identify the remains of those "disappeared" by governments in South America where she has helped reunite children with their parents and grandparents – to be buried properly. We are in a time when our genes can give us wonderful information on who we are and how we should live to be as healthy as possible. Why would I be afraid of that if it would help my daughter and her potential children live longer and more healthily?See the movie. Take your children if they are age appropriate. I have friends who are BRCA 1 and 2 positive who I will take. It's not easy knowing your genetics are working against you, but knowledge is the great equalizer. Keep up with my blog and I'll let you know what's going on with the movie. I plan to interview Annie Parker and Mary-Claire King – two of my heroes.