Living with a Mutation

It’s hard enough being a single woman dating in your early thirties. But, imagine having to tell the person you’re dating that you carry the gene mutation for cancer, and will eventually need to remove your ovaries and possibly breasts. Now, imagine having to tell that person you’re delaying the process because you’re waiting to have kids. Do you think it might add some pressure to the relationship? This is the reality for Joanna Rudnick.

At 27 years old, Rudnik found out she carried the BRCA gene, which is a gene mutation that can increase your chances of ovarian and breast cancer by 85 percent. Most women who carry the gene have to face the preventative decision about whether or not to remove their ovaries and breasts. Reluctant to share her own personal story, Rudnick had originally wanted to find another young single woman with the gene. However, after much hesitation, and no takers, Joanna, at 31 years old, decided to document her own story, as well as other people affected by the gene.

Rudnick’s new film In the Family, is about finding out the answers and living life with what some people fear, “a time bomb.” It is also a story about healing. Rudnick shows viewers that not only is she a filmmaker, activist, journalist, fighter, but she is also a friend to the many people that this gene mutation affects.

The Independent had the chance to speak with Rudnick about In the Family.

I read that you were looking for someone else to document living with this gene, because you knew it would be hard to tell your story. Were you prepared for just how emotional telling your story would get?

No, absolutely not. I’m still not prepared for it. I think during the process of putting my story out there, making the film, there is still sort of a protective coating because you’re in the editing room, and no one out there is seeing it. I didn’t realize how exposed I was until I started having screenings of the film, and that brings up vulnerability. Also, seeing it written about over the Internet and whatnot, I really lost my anonymity.

Do you think you still would have done the film knowing all of this now?

Yeah, I definitely would have because one of the greatest gifts I got from doing the film was that I really got over my own feeling of being tainted, also my own fury of keeping my secret and having such a difficult time talking about it.

Is there any part of you that wished you didn’t know about the tests?

There are some times where I think to myself, maybe I could have found out later in life. But I am actually happy that I know. I think it’s incredibly empowering information, no matter how difficult. I think it’s an incredible gift that I know what is ahead of me and that there’s things that I can do to either to detect it earlier or prevent it all together. I’m embracing that at this point.

It’s interesting you said that you have thought about wishing you had waited later in life. One of the most compelling parts of the film was the part where three sisters are on their way to go find out their tests results and the younger sister (23 years old) says she wouldn’t have done it this soon without pressure from her sisters. Also, there is Linda’s daughter, who will have to get tested eventually herself, but admits that right now she is just trying to get through high school. Do you think there is a certain age you should be to get tested?

I think that is a question that a lot of parents are asking right now—what’s the right age to even tell children that this is something that runs in the family, and what’s the right age to get tested. I hear parents say, “I just want to get my child tested.” But the truth of the matter is, you can’t get tested until you’re 18 because you need to actually have adult consent. I think there’s sometimes a frustration from parents with wanting their kids to know, so it’s really a complicated thing, but I think the right thing is that it’s an individual’s choice. No matter how old or young you are, you have to be able to make that decision on your own and be ready to hear the information. And it’s difficult to test negative, just as much as it’s difficult to test positive, or not just as much, but it’s different. And this brings up other issues that you see in the film, when Rachel tests negative (the oldest of the three sisters). So, I think it really is about individually being in the right place to have this information. Some people are ready for it younger, and some people are never ready for it, and just want to screen themselves and don’t actually want to take the test. It’s really different for everyone, and I think depending on what your family situation is—how much cancer runs in the family, did you lose a relative to it—everything from that to being in a committed relationship or having children, all of these situational factors can play into when people are ready for the information and how they will take it.

There are two men in your film who tested positive for the BRCA gene. Is there a specific cancer men are prone to with this gene? Women can do the surgery, I was wondering, are there any preventative measures that men can take?

That’s a very good question, and my one regret is that I couldn’t get into that more in the film, it will certainly be on the website. Men obviously do carry BRCA and they can pass it on to their children, but they are also prone to prostate cancer, and some cases male breast cancer. They certainly can screen themselves. There are also a number of unrelated cancers that they are just starting to do research on and link to men. So, this is a new area, but their chances are much lower, there is still an increase but they are nowhere like what a woman’s chances with BRCA are for breast and ovarian cancer.

Are you any closer to getting the surgery yourself now? I know in the film, you had decided to wait a little longer.

I definitely decided I’m having my ovaries out after I have children. It’s never been a question, the ovarian surgery, because my mother was diagnosed with ovarian cancer when she was 43. The breast surgery has been more difficult for me. I have no members of my family, first degree or second degree relatives, that have had breast cancer under the age of 56. So, I’m still struggling with the breast surgery decision. That is where I am right now. But I’m screening myself with breast MRI right now, which gives me some confidence that I am being watched extremely close and God forbid there is anything, that they would at least catch it very early. Something that I’ve learned recently which is interesting is that the number of women who actually have prophylactic surgery worldwide is under 20 percent. So, it’s out there and it’s an amazing option but there are a number of women out there who have this information and are screening themselves closely like I am doing.

In the film, you’ve just met this guy, and we watch your relationship develop, and break up during the film. Is it still impacting your relationships?

I think that not having a camera around a relationship is better. It’s an issue that comes up and that I have to address, with every relationship and I definitely feel like most people have been extremely supportive about it. I’m hoping whoever I do end up with will understand that it’s a part of me and it’s a good thing that I have this information and can be protective of myself. And that it doesn’t take away from our relationship.

Have you spoken with Jimmy since the film?

I have spoken with Jimmy since the film and he has seen the final version of the film.

Was it weird to watch the film, knowing you ended your relationship during the filming?

I would say it was challenging, it was challenging in the editing room post break-up. It would be challenging for anyone to watch a past relationship every day after it ended. The fact that he was supportive of the film was an absent gift to me and I think it made that process a lot less painful than it could have been.

Okay, so you’ve taken that preventative measure, are there any other preventative measures that doctors have told you to do, for example, supplements?

Well, I take the birth control pill, which reduces my risk of ovarian cancer by 50 percent. That is an amazing preventative option that I’m very pleased that I have available. I think a lot of women don’t know that the pill is protective against ovarian cancer, but that is one of the ways that I am protective. I exercise and I take vitamins that are supposed to help with healthy estrogen processing in the body, to be preventative about breast cancer. I’m certainly always thinking about things that I can do. I’m definitely very aware of antioxidants and trying to eat healthy and live a healthy lifestyle, because I do think that’s all related. But, I think the most important thing I am doing is screening myself and being vigilant about self-checkups and mammograms and MRI and ultrasounds. I’m not saying that I’m not going to wake up in a few months and say I’m going to have the breast surgery because it’s possible. I think it’s a constant process of going back and forth and it’s not an easy decision. I’ve seen the outcomes and I think they’re beautiful and incredible and I know many women who feel wonderful that they had the surgery and they’ve been basically helping me move towards that decision.

Does the surgery decrease your chances of getting cancer all together?

Yes, preventative surgery brings your risk down to five percent of getting breast cancer, which obviously dramatically reduces your risk. And these are lifetime risks—over your lifetime there is an 85 percent chance. It doesn’t mean it’s going to happen tomorrow, but I think one of the things that’s very devastating with BRCA gene, that you see in the film, is that there are a lot of young women who are fighting against these diseases. But, surgery definitely is an incredible way to reduce the risk, I’m just so grateful that we have these surgeries. Not every cancer, like pancreatic cancer for instance, has the same preventative measure available without serious consequences. So, just the fact that we have these surgeries…although I hope, one day, this isn’t the answer. I’m hopeful that one day we won’t be having preventative surgery and that we will be taking a pill or some sort of therapy that’s able to repair the mutation or gene. Or, find some other pathway in order to stop cancer from developing. We all want there to be a better future, and when I look at someone like Nicole [Nicole’s mother carried the BRCA gene and did not have the surgeries and she passed away from the cancer during the making of the film] I think –I hope—she’s negative, but I hope her options are different, and for that generation.

What kind of advice can you give to a young woman who is reluctant to get this test done?

I would always say to someone that this is your decision. And, you should be ready for it whenever you’re ready for it. Being able to be watched is an incredible gift that we have and that if they’ve had a relative pass away that year, you’re most likely not going to end up like your mother, or your sister, or whoever it is, because of the fact that you will be watched so carefully and you can take measures. With that, your DNA is not going to change, so you should be ready when you take the test, the outcome is not going to change. You either have it or you don’t. Think it through, give it some thought. Not that you can ever really be prepared but it’s information that, no matter what, will change your life. I doubt that anyone would disagree with that.

And, what kind of advice can you give to a young woman that just found out she is BRCA positive?

It seems like this is going to ruin your life. I felt stigmatized and alone at first, but like everything in life, you learn to live with it and it becomes less gigantic in your life and that you’re strong and that you’ll be able to find a way to live with this however you decide. There are options and there are great support networks out there. There’s a support group called FORCE and there are women at FORCE that will give you advice from anything from surgery to finding a genetic counselor. There is life beyond this. This is just one element of my life that people see in the film, but I have a very full life, and I enjoy my life and I relish the fact that I am living even though I am living with this. I’m healthy, I just happen to have this genetic mutation. I think all of us will be learning more about living with this has we get older and live with this information and make it part of our health care.

Has the test gotten any cheaper? You mention in the film how expensive it is.

The test has not gotten any cheaper to my knowledge. I’m really hoping that when people see this film and realize the cost of the test that they write to the company and they write to their representative and ask for them to look at how the patent system has kept the cost of this test out of the reach of many people and also kept it so that there can not be any competing test and an even better test. I really think it slowed innovation in a way that can be detrimental. It’s upsetting to think that there are people who can’t get it because obviously there is an insurance problem in this country and there are people who are under-insured, or don’t have any insurance, and they can’t get this information. We should all have equal access to this information and equal tools for fighting these diseases. It shouldn’t be people who can afford it can fight the disease and get to know. Part of the reason in the film when I go to Myriad is because this really can’t be the way that we deal with this new information: make it available to some people but not all.

Do you think this film will help reduce the cost of that test?

I hope so. It would be an amazing outcome if it did. But, I don’t know. I think that’s an ambitious goal. I hope I at least get people to think about the patenting of genes and questioning the system and starting to think about the health care system in general, especially in light of fighting cancer. Every time I say to someone the gene is patented, the first response I get is, you can’t patent a gene! I think if this film raises that question, then we’ve made some progress.

So, what is next for you after this film?

I’m still trying to figure it out. I’m spending the month of October after broadcast working on a few ideas. I’m really excited to jump into something that I am not in!

So, you don’t think you’ll ever do a personal story again?

No, I really don’t. I don’t think I can handle it. I hope that I really don’t have a story that is worthy of it. It was a hard process being in the film and I respect anyone who exposes themselves and puts themselves out there because it’s definitely not easy. I’ll always have a certain level of understanding and empathy for the subject.

I know this was the first time you directed, are you going to want to direct again?

Yeah, I do, I definitely want do. The subject interaction is my favorite part. So, I’m really looking forward to working on another film.

Related Links:
See In the Family on October 1 on PBS. For more information you can visit the films website at http://inthefamily.kartemquin.com/.

Also, get information on the support group FORCE at http://www.facingourrisk.org/.