POV: Upon the discovery that you tested positive for the BRCA mutation, which means that you have up to an 85 percent lifetime chance of getting breast cancer, and up to a 60 percent lifetime chance of getting ovarian cancer, why did you decide to step in front of the camera and tell this deeply personal story in In the Family?
Joanna Rudnick: I chose to step in front of the camera reluctantly. When I first found out I had the mutation, I didn’t tell anyone. In fact, I had even told a good friend of mine who knew I was getting tested that I tested negative. That’s how I felt about the information. It was stigmatizing, it was confusing, it was painful, it was frightening, and the last thing I wanted to do was talk about it to anyone. So the idea that I’m here five years later, talking about this deeply personal film I made where I put myself in front of the camera, is almost shocking to me. The reason I did so was because I underwent an evolution by doing a lot of research and realized that to really get people to talk about this issue, I had to tell my own story.
POV: Given your experiences, what would be your advice for young women who have cancer in their family history? What are the things that they should know about genetic testing?
Rudnick: I think the first thing I would say to any woman who has a history of breast and ovarian cancer in her family and who is thinking about getting the test is to really think about what she might do when she gets the results. Before taking the test, she should try to think about what decisions she might make if she tests positive and know that it might be a long journey ahead. Once she get the results, there’s no turning back, and she’s going to be making decisions for her future based on this information. There are so many life questions that are involved in getting a positive test result, including the possibility of passing on this gene to children.
It’s almost impossible to know how you’ll react to holding a piece of paper that says “positive for deleterious mutation,” but as much as you can, you should explore how you would feel living with that information ahead of time. I would advise women who are thinking about getting tested to talk it over with friends, partners and family ahead of time to build support before going into the test.
POV: You tested positive for the breast cancer gene at age 27, which is very young to learn something like that. How has that knowledge affected the decisions that you have made about your life up until now?
Rudnick: When I tested positive for the mutation at 27, I never realized what a great impact it would have on my life. Since then, I’ve been doing medical surveillance, so I’ve been watching myself very closely, trying to catch any cancer that would develop as early as possible. As I get older, every year, I’m faced with a decision about whether or not to have surgery. The surgery would involve removing breast tissue and doing reconstruction to avoid getting breast cancer, which is fairly common in women with BRCA mutations, and removing my ovaries after I have children to avoid getting ovarian cancer, which my mother was diagnosed with at 43.
So here I am, almost 34, and these diseases are, in some ways, constantly knocking at my door, waiting for me. I tell myself and my body: “Cooperate, don’t go off on me, wait till I can have the surgeries.” For any young, single woman, everyone talks about the ticking biological time clock. Well, for me, sometimes it feels a little more like a ticking time bomb because the ticking is not just because of fertility, it’s fertility connected with ovarian cancer. So for young women, these extremely complicated decisions get more intense every year. I’m now getting closer to having to confront the surgical options.
POV: Have you made any decisions in that regard yet?
Rudnick: Those of you who’ve seen the film will see that the film ends with me telling Luis Pedraza, Linda’s husband, that I will have the surgeries in time. That’s the feeling that I’ve had throughout, but what does “in time” mean, when I don’t know what my body is doing?
Everyone who has the BRCA mutation talks about having a magic number, and that’s usually the age when someone they know was diagnosed with cancer. My mother was diagnosed with ovarian cancer at 43, and I feel I have to have my ovaries out before then to be safe. I still would like to have children, and I’m 34 right now, so I’m waiting until I have children, hopefully, before I get my ovaries removed. The breast surgery, I’m considering doing soon, and let’s just leave it at that.
POV: Tell us more about surveillance and early detection options.
Rudnick: The more options we can put out there for young, BRCA- positive women, the better. There’s been more research looking into an early detection test for ovarian cancer recently — a blood test, a biomarker, like the one for prostate cancer. Right now part of the problem with ovarian cancer is that 75 percent of women who are diagnosed with ovarian cancer die from the disease. Ovarian cancer is the most fatal of the gynecological cancers, and it’s frightening. The early detection tests for ovarian cancer aren’t really accurate, and the blood test could be an option that lies somewhere between current surveillance methods and removing one’s ovaries. One of the options right now for women is harvesting their eggs — and it’s something that I’m definitely thinking about. A question I’m asking myself is: Would harvesting my eggs give me greater security? If God forbid, I did get diagnosed with ovarian cancer, then I would be protecting my fertility.
We’re in a very strange time in terms of medical advances right now. Part of the problem is that we’re in a sort of purgatory: It’s certainly not hell, which would mean getting these diseases, having them in families and not being able to do anything about it. But it’s not heaven, where you can take a pill and not worry that you’re ever going to get these diseases. Women have to make huge sacrifices to avoid getting these diseases altogether: The only true preventative measures right now are the surgical removal of healthy organs. And it’s a bitter pill to swallow. It’s incredible to have the information — knowledge is power — but the actual decision-making itself is not where we wanted it to be, the options are not where we want them to be.
Lots of times, people will tell me that genetics is like science fiction. But the reality is that genetics is not science fiction. There are those of us who have information about adult-onset diseases, who are living with probabilities, and who are making decisions about their lives based on genetics. I think that in addition to being a film about breast cancer and ovarian cancer, In the Family is very much a film about the role genetics is going to play in health decisions going forward.
POV: If you had the chance to go back in time, would you take the test when you did?
Rudnick: It’s such a difficult question, and it is one of those situations where hindsight is 20/20. But if I could go back in time, I probably would have waited a few years until I turned 30.
When I took the test, I was 27 and very afraid of doing any research, so I just went in and took the test. At the time, I didn’t want to know a lot before I actually got my blood drawn. Now, thinking back, I would have prepared myself better, and something I would say to a lot of women out there is this: Don’t be afraid to think about what this is going to actually mean to your life. I would have been more thoughtful about living with this knowledge.
Sometimes, you feel a real immediacy in your need to get the information. A lot of women will talk about the fact that a family member tests positive, and immediately, they themselves want to find out. But if you’re young, there’s no risk in waiting and being a little bit thoughtful before you take the test, because you’re going to have the information for the rest of your life. Once you have it, there is no turning back.
POV: And once you have that information, once you test positive, what do you do with that information?
Rudnick: It’s kind of a waiting game. You’re this young person, and we usually only think of cancer as a disease for older people. But then you are told that you have these incredibly high odds of developing cancer and then you have to go live your life. People sometimes tell you not to panic, not to be paranoid, not to be neurotic about it, but when you have a genetic mutation, and you have an up to 85 percent chance of developing breast cancer, it’s very hard not to wake up every morning thinking: “I’m going to develop breast cancer today.”
Like anything else, you just learn to live with it. You have to learn to not think about getting cancer every day or else you’d be completely paralyzed and you’d stop living life. I’m a healthy person, but I live partway in a disease world because I’m doing all this testing, waiting for this disease. Some women who are BRCA-positive actually refer to themselves as “previvors,” meaning pre-survivors. To me it’s the ultimate survivor story, because these are women who are removing healthy organs and healthy tissue to avoid getting diseases. They are part of the reason I wanted to make the film; I wanted to support this community and remove any stigma associated with having a genetic mutation and removing body parts to avoid getting cancer.
POV: Over the course of this film, you’re in a relationship with a man. Can you talk about the effect that making the film, and learning about being BRCA-positive had on your personal relationship?
Rudnick: When I first decided to make this film, I was not in a relationship, and I never thought that I would be putting a relationship into the film. But once I started dating Jimmy, who’s in the film, it was very obvious that what we were talking about a lot of the time when we were alone was the mutation and the impact the mutation had not only on my life, but also on our relationship. So it seemed to very naturally fit into the film.
Once, we were in my apartment and we had my small, handheld camera, and we just started shooting each other. I brought one of those tapes into the editing room, and everyone said: “This is part of the film.” One of my purposes in making this film was to show how a young single woman has to confront this information, how she tells a partner about it, how the partner reacts, how you both make decisions for the future and how this information impacts a relationship. So more and more, I put my relationship into the film. There was even stuff in the film that I didn’t ever want to be in there. To this day, I look back and think, “I can’t believe I let that be in there!” But it was honest — it was honest to put the breakup in there; you can’t show part of the relationship and not show the end of the relationship. So part of the difficult process of editing this film was for me to distance myself from the person who had experienced that emotionally difficult breakup and to let the breakup be in the film as part of the story.
POV: Your mother was diagnosed with ovarian cancer at 43, and thankfully she is a survivor. How has testing positive for the BRCA gene affected your relationship with her and with the rest of your family?
Rudnick: We were incredibly close already, and it’s brought us even closer because the making of this film created an atmosphere in my family where we actually talked about my mother’s ovarian cancer. For years after my mother survived ovarian cancer, we never talked about it. But in making this film, my mother, sister and I sat down and talked about it for the first time, and we also talked about my sister testing negative for the gene.
The reason I named the film “In the Family” is because it’s such a complicated family dynamic and it’s the one medical test out there where you’re not just testing the individual, you’re testing the entire family and the entire extended family. So if one person wants to undergo the test, you open up the possibility for everyone who is in the family. And in opening that up, you open up the history of the disease and the history of all the relatives who had cancer before you.
In my own family, my sister wanted to know whether or not she had the mutation because she had three children and she would have made decisions at that point based on the information. She tested negative and then it was in the family, so it was time for me to find out whether I had the mutation — but I was much younger and in a different life situation. So my finding out I was positive had different implications than it would have had for her.
I also think making the film brought my family closer because I was exposing it and challenging all of us to talk about it. That’s the only way anyone’s ever going to be able to find knowledge, is to start talking honestly about the relatives who have had these diseases. And that’s an important thing with this film: I hope people sit down after they watch it and talk to their family about what diseases they have in the family, and see if there are any patterns.
POV: How has the process of making this film changed you?
Rudnick: Making the film has made me less scared of the mutation in a strange way. I don’t mean less afraid of getting cancer because I’m still afraid of getting cancer. I mean less afraid of the stigma of having the BRCA mutation. I was so afraid to tell people and talk about it because I thought people would judge me differently, even though I inherited the mutation. But I felt very marked by it, tainted in some way, and making the film has allowed me to feel that there are a lot of women out there, like me, who are dealing with this information, and the only way to break down that stigma is to start talking about it. So it really has allowed me to come out and be more comfortable with the knowledge; not with the fact that I actually may get these diseases or that I have to take these surgical precautions, but more comfortable with the knowledge itself.