In the Family

A young filmmaker grapples with a terrible decision after learning she has a gene mutation for breast and ovarian cancer.

In spring 2001 Joanna Rudnick was living carefree. The 27-year-old documentary filmmaker had just returned from a long journey through Nepal and India. She had a wonderful job in New York as a producer at American Masters, the PBS series that profiles American cultural artists. She was happy with her career and looking forward to love, marriage and children.

Then her sister, Lisa Rudnick Stempel (FSM93), called shortly after she arrived at home and asked, "Did Mom tell you about her test?"

"No," replied Joanna.

"It was positive," said her sister.

The test was for a genetic mutation that increases an individual's risk for breast and ovarian cancer. Because of the Rudnicks' family history of cancer and the fact they are Ashkenazi Jews, Stempel, a radiologist specializing in mammography, had suggested their mother be tested. The Rudnicks' mother, Cookie, had survived ovarian cancer at 43. And their grandmother, Ethel, had a radical mastectomy at 56. (Ashkenazi Jews have a higher incidence of a number of genetic mutations.)

So Joanna (WCAS96) decided to have the test. Her mother and sister helped her find a genetics counselor in New York City.

Joanna went alone to have the test. But she asked her mother to fly in from Chicago to accompany her to the disclosure session.

With her mother at her side, Joanna learned she had tested positive for the BRCA (breast cancer) genetic mutation.

"I was so unprepared for what it would be like to sit and stare at this piece of paper. Simply put, it was life changing," says Rudnick. "I was dating, having fun; it was a wonderful time in my life. I was only 27, but I grew up fast."

The hardest part for Rudnick was realizing what her mother must have been feeling. "I thought, 'What is this like for this woman who survived ovarian cancer, to live all these years thinking that this was behind her, to be sitting here and to learn that she had passed this on to her young daughter?'" recalls Rudnick. "It was devastating to me. I almost felt guilty for having it."

After the disclosure session, Rudnick didn't tell anyone outside her family. "I did everything possible to forget that I was basically a ticking time bomb," she says. It took two years of living with this dark secret before Rudnick could be open about it.

After graduating from Northwestern with a degree in English, she had gotten a master's degree in science and environmental journalism from New York University. As she struggled to face the next step in dealing with the genetic mutation, she decided to make a movie about it and the devastating choice women with the mutation have to face: whether to have their ovaries and breasts removed to prevent the cancer from eventually possibly taking their lives. They also have the option of close monitoring through routine MRIs and ultrasounds.

The statistics for those with the mutation are staggering: They have up to an 85 percent chance of getting breast cancer during their lifetime and up to a 60 percent chance of developing ovarian cancer.

Rudnick searched for an unmarried woman with the mutation who had not had the preventive surgery to be the focus of the film. In the end she realized she would have to tell her own story on camera and document her struggle to decide if she should have the life-saving surgery or hold onto her dreams of having children.

Rudnick's documentary, In the Family, tells of her fight with the specter of genetic cancer and also that of other women and their families living with, coping with and dying with cancer mutations BRCA1 and BRCA2. In the film Rudnick also explains the genetics behind this deadly mutation. She tracks down the scientist who discovered the gene mutation in 1990, Mary-Claire King, at the University of Washington. And she interviews researcher Mark Skolnick, who won the race to locate the gene on chromosome 17, who patented the gene sequence and whose company Myriad Genetics now tests people for the mutation for $3,000.

While interviewing women who had undergone preventive surgery, Rudnick says she was amazed to discover the advancements in breast reconstruction since her grandmother's radical mastectomy. "You can reconstruct the breast," Rudnick says. "And it's really quite beautiful.

"It was so important for me that the audience sees these women celebrating life, women who've had prophylactic mastectomies who are sexy as can be, who have beautiful bodies and who are living life."

It took five years for Rudnick and Kartemquin Films to make the film and one year to edit it. Today when Rudnick watches the film she remembers the roller coaster of emotions she went through in her own life while making the film.

"Now I realize that I'm so much more than BRCA. I'm actually a young, vibrant woman with a career, with friends and relationships and all the same aspirations as other women my age," she says. "Sometimes I don't recognize who I was when I made the film. I'm really at peace with having this genetic mutation.

"I think because my mother is a survivor and my grandmother is a survivor," continues Rudnick, "I've always felt that, no matter what I decide to do about the surgery, I'm going to be OK — no matter how dark the moments get, especially being so close to death making this film and being with women who have passed away from the disease. After seeing all this up close, all you want to do is live. You just want to live and live and live, however you can."

In the Family, Joanna Rudnick's directorial debut, premieres on the PBS documentary series P.O.V. on Wed., Oct. 1. Rudnick is director of development and a producer at Kartemquin Films in Chicago. Watch the trailer for In the Family.

Stephanie Russell is editor of Northwestern magazine.