"In the Family": Documenting Genetic Breast and Ovarian Cancer

Friday, 17 October 2008 13:31 By Jessica Reaves, Truthout | name.

"In the Family": Documenting Genetic Breast and Ovarian Cancer

    Genetic screening exposed Joanna Rudnick's risk for hereditary cancer. Five years later, she wrapped a documentary film - about DNA, devastating illness and family - far more revelatory than any medical test.

    They arrived early. As they walked across the waiting room, a voice stopped them from behind a closing door. "I'm not ready for you." As the words, clinical and cold, floated in the silence, the young woman sat down next to her mother. And she knew, as surely as she'd ever known anything: Everything was about to change.

    Just a month earlier, Joanna Rudnick was happy.

    It was May of 2001 and, at 27, she'd finished graduate school in journalism and was living in New York City, working as a producer at PBS' "American Masters," a job she enjoyed. She was dating, and looking forward, albeit in a vague sort of way, to having her own family.

    She'd just returned from a trip to India, and was still in a happy post-travel haze when her sister Lisa called with a strange question. "Did Mom tell you about the gene?" "What?" Joanna was mystified. "Call Mom," Lisa replied.

    Lisa, a Chicago radiologist who specializes in reading mammograms, was always on top of the latest cancer research, and had recently become interested in the expanding universe of genetic cancer screening-especially a blood test that reveals genetic mutations linked to a heightened risk for breast and ovarian cancer. The Rudnicks' mother, Cookie, had been diagnosed with ovarian cancer in 1986, at 43. She was among the lucky ones, surviving the cancer and the grueling treatment. Fifteen years later, Cookie's illness was rarely discussed, but it was clearly on Lisa's mind. "She was very concerned for herself and for her children, and she decided to be tested," Cookie remembers.

    Accurate results for Lisa hinged on Cookie being tested-her results would provide a blueprint of sorts, a genetic comparison. And so Cookie and Lisa had their blood drawn and sent off to a lab in Utah. Several weeks later, the results were in: Cookie had tested positive for a mutation on the BRCA1 gene, which meant each of her children had a 50 percent chance of inheriting the same mutation. Lisa had tested negative.

    Joanna called her mother, and Cookie explained the news. "I don't know how much I heard, or understood," Joanna says. "And it's not because I didn't understand the concept. It's not like I hadn't told doctors my mom had ovarian cancer and my grandmother had breast cancer. It was just totally surreal."

    Through the fog of her mother's voice, one thing became clear to Joanna. "I thought: Two girls-one's negative, the other one's going to be positive."

    At her mother's urging, Joanna made an appointment with a genetic counselor. She recalls very little about their conversation, but she does clearly remember drawing up a family tree, using information Cookie had faxed to the office. As they marked each person's name with any known illnesses or their cause of death, Joanna's heart sank. "We sat there looking at the chart," she recalls, "and there was all this ovarian cancer on my mother's father's side, and breast cancer on the other side. And seeing all those cases, some of which I'd never known about, really threw me. I felt," she adds, "like I was at the bottom of a funnel." At the topmost reaches of the tree, two blank spaces waited to be filled.

    Joanna let a technician draw her blood, and left the office. She didn't think much about the course of events she'd set in motion until a month later, when she got a phone call. Her results were back.

    Cookie flew in from Chicago, and they were on the subway, on their way to the appointment, when reality finally hit Joanna. "We were laughing and joking around like usual," she says. "But I remember thinking, 'Holy shit. I'm about to get some really serious information."

    "I started to get it," she remembers. "There was no turning back. I had to find out, and I couldn't opt out of finding out at that point. It was like for the first time I really considered the possibility that maybe I don't want to know this."

    After the brush-off in the waiting room, seeing the actual test results -the words "Positive for Deleterious Mutation" stamped in bold black type across the white page-was weirdly anticlimactic. "I just felt shock," Joanna says. "I wasn't surprised, but I was shocked." Joanna, like her mother, had tested positive for a mutation on the BRCA1 gene. The two BRCA genes are very similar, but a mutation on 1 (as opposed to 2) signals a slightly higher risk for ovarian cancer, and a risk for slightly younger onset of breast cancer.

    Her first thought was for Cookie. "I remember not thinking, 'I'm going to get cancer,' " Joanna says. "I remember thinking, 'This woman, who survived ovarian cancer, is going to have to sit here and watch her daughter face the same threat.' And that was just so sad to me."

    Struggling to focus on the paper through a haze of tears, Joanna recognized that something had shifted irrevocably, in herself and in the world around her. "I started to realize that my life wasn't going to be exactly how I thought it was going to be. I was never going to be the same."

    Everything was happening so quickly. The counselor started ticking off her options: Surgery, surveillance, drugs. And Cookie saying over and over, "But I'm a survivor!"

    "It was like she was fighting the news," Joanna remembers. "She kept repeating, 'We're survivors.' "

    She'd told very few people about the test: her family, an ex-boyfriend with whom she remains particularly close and a friend from graduate school. When she left the genetic counselor's office, Joanna went back to work, and then she called her father, Lewis Rudnick, and her ex-boyfriend with the news. She told her grad school friend that she'd tested negative.

    "I still can't believe I did that," Joanna says. "I think I did it because she knew a lot about the mutation, and understood what it meant. And I was just so not ready to talk about it."

    Back in Chicago, Lisa took the news especially hard, Cookie remembers. "I think the person who feels it the most, sometimes, is the sister who tests negative." Lisa already had her husband, her kids, says the Rudnicks' father, Lewis. "She felt in some respects it would be better if she'd had it, rather than Joey."

    That evening, Joanna met her mother at the theater. Cookie had a gift for her daughter: a pin in the shape of a teapot. The attached note read: "You make your own tea leaves."

    "It was her way of telling me that I was going to decide how this turned out," Joanna says, "which was exactly what I needed to hear."

    Everyone agrees on this much: About 1 in 1,000 women carries the BRCA1 or BRCA2 mutation, which translates into an exponentially increased risk for developing breast and ovarian cancers. When it comes to quantifying that increased risk, there's considerably less consensus.

    According to the National Cancer Institute, the risk for breast cancer in the general population is about 10 percent, and the risk for those with the BRCA mutation is between 35 and 90 percent. And while less than 2 percent of the general population will develop ovarian cancer, the incidence climbs to anywhere between 16 and 60 percent in those with the BRCA mutation. Some researchers feel the low end of the NCI figures is too conservative, putting BRCA-positive breast cancer risk as high as 75 to 90 percent, and the ovarian cancer risk between 65 and 80 percent.

    Women who test positive for the BRCA mutation are immediately counseled on various treatment options, including surveillance, prophylactic (preventative) surgery or chemotherapy (using a drug like tamoxifen).

    Only about 8 percent of women choose preventative chemo, according to Kelly Metcalfe, RN, PhD, who works with BRCA 1 and 2 positive women at the University of Toronto. The side effects of the drugs can be difficult to deal with on a long-term basis, she says. Tamoxifen, for example, increases the patient's risk of uterine cancer, cataracts and blood clots.

    "Women are generally much more interested in having surgery," explains Metcalfe.

    While surgical procedures carry substantial risks and drawbacks, they "definitely reduce the risk more" than other options, Metcalfe says. According to the International Journal of Cancer, about 18 percent of BRCA-positive women choose preventative mastectomies, reducing their risk of breast cancer by almost 100 percent. The surgery was in the news recently when the actress Christina Applegate, 36, announced she'd had a double mastectomy after finding cancer in one breast. (Applegate, whose mother had breast cancer, carries the BRCA-1 mutation).

    A prophylactic oophorectomy (removal of the ovaries) reduces the risk of ovarian cancer in BRCA-positive women by 80 to 90 percent, and reduces the risk of breast cancer by 50 percent. (Ovaries produce estrogen, which is linked to increased breast cancer risk.) Only a total hysterectomy (removal of the ovaries, fallopian tubes, uterus and cervix) can essentially eliminate the risk of ovarian cancer in BRCA-positive women. (Even then, a patient still faces the minute possibility of developing cancer in her peritoneal lining.)

    I first met Joanna on an unseasonably warm day in April of 2008. A striking brunet, Joanna has clear, pale skin punctuated by dark, heavily-lashed eyes. She's warm and quick to laugh -her words trip over each other in their haste to be heard.

    Joanna got her test results in May of 2001. Two years later, she began work on "In the Family," a documentary film about genetic testing, families and cancer. By this time she'd moved back to Chicago and found a job as a producer with Kartemquin, the film company behind "Hoop Dreams." In 2005, after raising enough money to finance her movie, she started shooting. Filming, in doctors' offices, geneticists' labs and at countless kitchen tables, went on for two years.

    After a protracted editing process, Joanna spent the summer of 2008 traveling to screenings across the country, finding equally receptive audiences among patient advocates, documentary festival juries and clinical researchers.

    Such is the peculiar power of this film: Part autobiographical record, part clinical analysis, part vociferous call to arms. "In the Family" is not easy to watch, but its pathos is tempered by wry insight and remarkable lucidity.

    "In the Family" wasn't supposed to be a movie about Joanna Rudnick. Initially, Joanna struggled to find her primary subject: a young, unmarried woman considering the BRCA test and capable of articulating a highly charged internal debate: What if I test positive? Is now the right time to get tested? If I test positive, how will I tell my partner? Does a positive result make me "damaged" goods? How long can I wait before I act on this information? If I'm not involved with a partner now, and I want to have biological children, what should I do?

    It wasn't long before she abandoned her search: No one was willing to expose such personal decisions and private fears to a stranger's lens-much less to wider public scrutiny. So Joanna turned the camera on herself, documenting her rawest emotions, while capturing the journey of other families, other women dealing with the threat-or reality-of cancer.

    This development came as a surprise to her family, who are decidedly not in the habit of sharing their personal lives with strangers.

    "We are a very tight, very close, very private family," Cookie Rudnick explains.

    Cookie, at 63, looks very much like Joanna; in old family photographs, the resemblance of the 30-something Cookie to her younger daughter is uncanny. At the family's Highland Park home, Cookie can't hide her delight in her youngest child. She and Joanna are very affectionate with each other, often reaching across the table to touch one another's hand. When asked by a visiting photographer to hug for a portrait, they laugh, "That's easy!"

    Lewis Rudnick, his black beard and hair shot through with white, smiles at this exchange. Lewis, 71, has had his own health issues over the years. He's more reserved than his wife and daughter; as a mortgage and banking attorney, he brings a lawyerly attention to detail to discussions of emerging diagnostic tests and to the scheduling of family medical appointments.

    When Joanna first proposed the film, neither of her parents was particularly thrilled by the thought of exposing their family's entire medical history to the world.

    "I grew up in a family that didn't discuss cancer," Cookie says. That reserve was evident in 1986, when, after months of ambiguity, Cookie was diagnosed with ovarian cancer. She and Lewis dealt with the diagnosis and the grueling chemotherapy treatments in a characteristic fashion: quietly and without fanfare.

    "I had no intention of telling anyone. We keep things inside the family, in crisis situations."

    And that's precisely how they would have continued, probably quite happily. But then, five years ago, their younger daughter proposed a project that would strip away their protective reserve, expose their darkest fears, and ultimately bring them together them in ways they never expected.

    "Joey opened us all up when she started talking about the film," says Cookie. "It changed everything. The whole dynamic. Everything."

    Both parents expressed their concerns: Lewis worried about how thinking about her test results on a daily basis might affect Joanna's mental health. Cookie's fears were more general. "It's not an easy film to make, or be in, or watch."

    She's right: Thanks to Joanna's brutally honest depiction of life under the looming specter of cancer-not only her own experience, but those of the many families profiled in the film-the film doesn't suffer from a shortage of emotional scenes. Joanna and her crew followed mothers, daughters and fathers from around the country as they visited genetic counselors, got test results and fought for insurance coverage.

    Some of the film's most poignant (or infuriating, depending on your point of view) moments involve Jimmy, Joanna's boyfriend, who featured prominently in this chapter of her life, telling her, "I love who you are, with the gene ...," and later, after a particularly grueling doctor's appointment, making this fateful pronouncement: "I'm not going anywhere."

    As it happens, Jimmy went somewhere (without Joanna) not long after uttering these reassuring words. The demise of the relationship is heartbreaking, not only because of the rawness of Joanna's emotions, but because Jimmy's departure underscores one of her greatest fears: that the mutation, and what it means for a shared future, will be too much for potential partners to handle. Some days, the anxieties she wrestles are decidedly dark. "There's this sense of being tainted, which is a word I kept coming back to," she says. "Not only do I have this hugely elevated risk for these cancers, but I'll have to go through some pretty serious body modifications to avoid them."

    And then there's the issue of dating. Joanna used to worry about how-and when-to broach the subject. Is the first date too early? Is the fourth date too late? These days, thanks to the film, Google saves her the trouble. So the topic's on the table, but what's next? How do you bring up the possibility of future illness-not exactly the most romantic subject in the world-when a relationship is still young and fragile?Marie-Claire King, the pioneering geneticist, gave Joanna this advice: "You can start by saying, 'Everyone has a genetic mutation. Mine is just in a gene we know about.' "

    In 1990, Mary-Claire King was a geneticist at the University of California- Berkeley. One day, she made a stunning discovery: She had located the BRCA1 gene on chromosome 17 of human DNA, a breakthrough that sparked a mad dash to isolate and clone the gene-the next step in creating a dependable test for cancer-linked mutations. Mark Skolnik, a scientist at Salt Lake City-based Myriad Genetics, won the race in 1994. Myriad, the sole patent holder, released the clinical BRCA test in 1996.

    In the subsequent 12 years, the company has tested more than 250,000 blood samples, 100,000 of them during the last year, according to William Hockett, Myriad spokesman. That's a 50 percent increase each year, reflecting the public's mushrooming interest in genetic testing.

    While Hockett would not disclose Myriad's profit margins on the BRCA test, there's no doubt the company has made an enormous amount of money from this patent: They charge $3,120 for a full sequence screening and $415 for additional family members. But, as Hockett points out, some insurance companies do cover the costs, in whole or in part.

    Billing your medical insurance for a genetic test, of course, raises new questions: Who will have access to my test results? If I test positive, can I be dropped from my current insurance, or denied future coverage? Will my results affect my children's medical coverage? HIPAA (the federal medical privacy law) offers some protections, but the brave new world of genetic testing opens up an entirely new landscape of concern.

    In May, President Bush attempted to assuage those worries-and yielded to pressure from patient advocacy groups-by signing the Genetic Information Nondiscrimination Act (GINA), which prohibits U.S. insurance companies or employers from discriminating against individuals based on information revealed by genetic tests. The law takes effect in 2009.

    To undergo genetic testing is to open a Pandora's box of uncertainty. The questions are unending, relentless and they can drive you to the breaking point: Who needs to know? When do I tell them? What do these numbers really mean to my life? But for BRCA-positive women, at least, the treatment options are clearly defined: They can choose drugs, surgery or the watch-and-wait approach.

    For now, Joanna has opted for surveillance. It is not a decision that sits easily with her. She emphasizes that she "completely respects the decision to have surgery at any age." And she understands the appeal of taking definitive action. "Part of me thinks, oh, just sign up and do [the surgery] tomorrow," she reflects, ruefully. "What am I waiting for?"

    But there's another part of her that feels very differently. She's spent much of the past five years consumed by thoughts of her mutation, sifting through the emotional aftershocks, usually in front of a camera crew. She's tired of being identified by her test results. "I just want to live a little right now," she says. "But this knowledge is so much a part of my life, and I have to try so hard not to let it be every single thought. Because if I did, I'd be paralyzed in bed, not able to move." She sighs, and straightens her shoulders. "But I don't want to be naive, and I'm watching myself as closely as is humanly possible."

    As a single, 34-year-old woman who wants to have children, Joanna is never unaware of her age. Since she got her test results, every birthday carries particular significance, bringing her one step closer to the moment when waiting is no longer an option. Even as she watches and waits, Joanna knows she is facing a variety of deadlines for surgery. BRCA-positive women are generally advised to have an oophorectomy after they've had their children, or by their early 40s.

    And while each year brings her one step closer to that unwelcome milestone, Joanna's internal alarm clock is calibrated to a more personal timeline: Her mother was diagnosed with ovarian cancer at 43. "I can't imagine what that birthday will feel like," Joanna says. "But I do know I won't have ovaries," she adds, laughing. "As soon as I'm done having children, they're gone. And the sooner, the better."

    Of all the gifts "In the Family" has given Joanna, one of the most profound, she says, is the knowledge that when she does have her surgeries, she won't have to sacrifice her femininity, or her womanhood. "These surgeries really do call into question how we view our sexuality and our fertility," she points out, homing in on one of the most unsettling inconsistencies in women's self-perception: We all recognize that we are more than our breasts and our ovaries. But the idea of losing them shakes our very identity to the core.

    I never identified with my breasts," Joanna tells me. "I've always been small-chested, and I've always liked them but I never played them up. I was never a breast person, I guess," she laughs. Her test results changed that. "It's like all of a sudden you're just really in touch with your breasts."

    And when you know you will lose them, you realize you're going to have to make friends with another pair. Happily, thanks to surgical advances, many women are finding that their post-mastectomy breasts are actually an improvement on nature. In one of the film's lighter scenes, Joanna visits a plastic surgeon's office and models a pair of silicone implants. As she admires her enhanced profile in the mirror, you can practically see the clouds parting.

    She's "pretty much sure" she's going to have the surgery, she says, but she's not ready to do it right now. In moments like this, it helps to call on the wisdom of Lewis Rudnick: "You worry about the things you can control, and you don't worry about what you can't control." And so Joanna controls what she can: She takes oral contraceptives, which have been shown to reduce the incidence of ovarian cancer. Environmental factors in cancer are much more difficult to measure, but Joanna errs on the side of caution, eating organic food, avoiding soy and chicken, and taking a variety of vitamins. She's a big fan of yoga, and has recently bumped up her cardiovascular exercise, which has been shown to reduce the incidence of breast cancer.

    And then there are the tests. Thanks in part to constant reminders from her mother and sister, Joanna is extraordinarily vigilant about testing. She gets a breast MRI (recommended for all high-risk women) every six months to a year, "depending on whether they see anything," she explains. "I get ultrasounds in between the MRIs, and I'll have to start getting mammograms soon, but I'm a little bit nervous about the radiation ... My sister is going to kill me for saying that. But it's just one of those things I worry about."

    Mammograms, the long-standing first line of defense against breast cancer, have come under fire in recent years as clinicians and researchers question the test's ability to detect early-stage tumors. A 2008 JAMA study found that in scans of 40 women with breast cancer, ultrasound plus mammogram found 31 cancers, while mammogram alone found just 20. MRI, or magnetic resonance imaging, remains the gold standard in detection, capable of picking up on abnormalities on a cellular, not just structural, level. The American Cancer Society agrees and recommends annual MRIs and mammograms for high-risk women (those who have tested positive for the BRCA1/2 mutation or those with a significant family history).

    Although her BRCA1 genetic mutation makes her statistically more likely to develop breast cancer than ovarian cancer, Joanna fears ovarian cancer far more. That's partly because she watched her mother fight the disease, but also, she says, because her experience with breast cancer feels so much less immediate. Ovarian cancer struck Cookie when she was young and vital, but Joanna's only seen older relatives battling breast cancer.

    And so, if Joanna's ovaries get less professional attention than her breasts, it's only because the testing options are so inferior. Ovarian cancer is infamously difficult to detect; its symptoms, which include bloating, cramps and nausea, are easily dismissed and often overlooked by women and doctors. This is particularly cruel given the aggressive nature of the disease: According to the American Cancer Society, when ovarian cancer is diagnosed in its earliest stage (about 20 percent of cases), more than 90 percent of women live five years. Only 30 percent of women who are diagnosed in later stages live that long.

    The goal, then, is vigilance. Joanna submits to a twice-yearly regimen of trans-vaginal ultrasound. "I feel like I should name my ovaries," she says. "That's how well I know them." Her blood is also tested for elevated levels of protein CA 125, which can indicate the presence of ovarian cancer. That test can provide inaccurate results-but it's the only blood screening tool available. That's changing quickly: In June, a new blood test called OvaSure came onto the market, touted by maker LabCorp as an early detection test. The Food and Drug Administration isn't so sure-calling the test "high-risk" and calling the company's data into question. While LabCorp defends their product, it seems the ovarian cancer community will have to wait a bit longer for a revolution in testing.

    It may sound like she's "doing nothing," but Joanna is quick to point out that postponing surgery is hardly a passive choice. There's an emotional toll to the constant testing, watching and waiting. "I get a lot of anxiety when I get my trans-vaginal ultrasound," she says. "It's a hard day. It's always a hard day." Again, she controls what she can. She and her mother arrange their screenings for days when Lisa, a mammographer who often reads her sister's tests, is onsite. "We go when Lisa's working, and she comes down to see us," Cookie says, laughing. "In case we fall apart."

    The cost of all these tests can be substantial. An MRI runs $1,000 and up, and ultrasounds start at $100. Mammograms cost between $50 and $150, but are covered by most insurance as well as Medicare. While ultrasounds and MRIs are not covered by Medicare, many private insurance companies do cover MRIs for women with an established high risk for breast cancer. Some high-risk patients, citing privacy concerns, choose to pay for the tests themselves. For others, that's simply not an option.

    Joanna knows she's been lucky, as far as insurance goes. She's had to fight for coverage for her MRIs, but so far, she hasn't experienced any major gaps in coverage.

    In May, "In the Family" showed to a large audience at the Thorne Auditorium at Northwestern University's Chicago campus. The screening, part of the Silverstein Lecture series, was sponsored by the Center for Genetic Medicine, part of Northwestern's Feinberg School of Medicine.

    I find Joanna at the front of the auditorium swigging from a bottle of water. She drinks carefully, so as not to disturb her red lipstick. She looks a bit nervous.

    She hugs me hello. "This is pretty overwhelming ...," she says, in her customary rat-a-tat-tat delivery, gesturing to the quickly filling seats. She tells me about a recent showing in Tampa, which attracted 400 people. After seeing the movie, one woman e-mailed Joanna and asked how she could get the film. She wanted to show it to her new boyfriend, so he could have some idea what she was dealing with. Joanna beams. "That's why I made this film!" She thumps her fist to her chest. "That's it!"

    After Joanna greets a long procession of friends and colleagues, thanks her family and doctors and provides a brief introduction to the film, the theater goes dark, and Joanna slips out a side door. She reemerges only to take part in a Q&A session. I ask her later why she leaves while the movie's playing. Is it too emotional? "It's definitely emotional, every time I see it, and it can be hard for me to watch," she says. "But I also leave because I've seen it so many times, and I'm always nervous that I'll see something I want to change, and I know I can't."

    That evening, when the panel discussion is over, and the final question has been asked, an audience member waves her hand and stands up. "I'm a 30-year breast cancer survivor and I'm so proud of you for making this movie," she tells Joanna, who is sitting onstage with the rest of the panel. "It was a really gutsy, meaningful thing to do. And I went through this by myself, and it was very lonely. I'm so glad to see all of you out here tonight."

    Despite everything we've learned in the past half-century about detecting and treating cancer, countless mysteries remain. What makes our bodies turn against us? Why, once they find a foothold in our systems, are cancer cells so wily, so good at hiding from even the most aggressive chemicals and surgeries? And, perhaps most critically: Why do some people get cancer and some people don't?

    For the BRCA 1/2 community, this last question carries special weight. While testing positive for BRCA 1/2 mutations exponentially increases one's risk of developing breast or ovarian cancer, not everyone who has the mutation will get cancer. That population-those with the mutation who never develop cancer-represents a tantalizing new frontier in the battle against the disease.

    In the Myriad labs and around the world, genetic research is growing by leaps and bounds. It's possible to imagine a moment, in the not-too-distant future, when a blood sample is enough to draw up a virtual roadmap of a patient's genetic future, complete with risk analysis and prescribed treatments or preventive measures. And then, of course, there is the possibility of genetic manipulation, or treating "damaged" genes, which has sparked profound hope and fear in both the scientific and religious communities.

    Perhaps it's the inevitable effect of working for so long on a topic with such profound personal implications, or perhaps it's the natural result of a compassionate soul encountering staggering socioeconomic and cultural inequities. In any case, the film has made Joanna into something of an activist, determined to work on behalf of other women, in other communities, whose lives are wildly divergent, but whose destinies are inextricably linked to her own. "I realize that my situation cannot speak for every woman out there who has BRCA, who may have a family history of these diseases," she says. "But it was really important for me to figure out what barriers are keeping people from getting this test, this information." Those barriers run from obvious inequities (lack of insurance coverage) to more subtle roadblocks, including entrenched cultural resistance to doctors and the medical establishment.

    "We're just starting to scratch the surface of these issues," Joanna says. "Providing access, and figuring out how useful this test is, and what other tests we need." Cookie, in particular, has noted her daughter's newfound passion, and the ripple effects of the movie. "She's amazing," she nods proudly. "What she's done with this knowledge, and how she's changing people's lives."

    If she could go back in time, knowing everything she knows today, would she choose to be tested? "Absolutely, yes." Joanna is firm. "Maybe I could have waited a few years-because once you open that door, you can't close it again. But I think the information really is a blessing. It's a real source of power." Her parents are more equivocal, but they agree-testing was the right decision for their family.

    Joanna has not only embraced her genetic information, she wants more. "I wish they could look at my other genes and tell me if I'm more likely to get breast or ovarian cancer. I want them to be able to plug me, Joanna Rudnick, into a computer and get specific information. I want someone to tell me, 'Your chance of getting ovarian cancer is only 38.5 percent.' " She stops there, but the subtext is clear: If she knew her actual risk, she could make better decisions. If she knew she had some wiggle room, maybe she would feel less anxious about her choice to wait.

    Even with that unspoken caveat, making - and finally completing - "In the Family" has done much to restore the natural optimism she feared she'd lost on that spring day in 2001."I feel so much freer now," Joanna announces. "Like there's more space." By chronicling her own journey through a profoundly painful experience, she has come to terms with her darkest fears about cancer and death. Before she started work on the film, "I felt so stigmatized and cloistered," she sounds a bit surprised, remembering something that feels so foreign. "Now I'll tell anyone and anything. I'll talk about my breasts and ovaries like they're going out of style."

    "I'm definitely in a happier space now." As Joanna talks, she twists her hair into a neat knot at the base of her neck. "I'm excited about making another film, and about falling in love." She smiles and stands up, obviously anxious to move on. "I just feel so much more ready to live."

Last modified on Friday, 17 October 2008 15:57