Case Study 6: Testing Family Bonds BARBARA BIESECKER What motivates people to get testing is complicated, like all human behavior, so it's too simple to say that it's one thing. I think what motivates some people to choose testing is that they already know that they're at increased risk for cancer because of their family history. They're living with a great deal of anxiety as a result of knowing that, and there are some of us that prefer to know rather than not to know. SHERRY PEDERSEN There are three girls in the family. I'm the oldest, Lani's the middle, and we have a younger sister too. Lani and I both always thought that at least one of us would probably get cancer. My grandmother died in her early 40s, probably about 41. My mother died at 44 of breast cancer, and basically all the women in the family, they've all died of cancer in their 40s. SHERRY'S HUSBAND Hi. SHERRY PEDERSEN Hi. SHERRY'S HUSBAND Need any help? SHERRY PEDERSEN Yeah, I'll take the food and you take the bike. C'mon pups. SHERRY'S HUSBAND C'mon, dogs. SHERRY PEDERSEN Let's go in. SHERRY PEDERSEN We knew that breast cancer ran in families. We didn't know what percentage, we didn't know what the odds were, but we knew that put us at extra risk. LANI SINCLAIR I'm 47 years old. I'm married, I have an eight-year-old daughter. My sister Sherry is 49, she lives in California, which we think is too far away. The history of the cancer in the family has certainly been a bond, if that sounds too positive, but it has been a bond. LANI SINCLAIR Sherry, it's Lani. How are you doing today? LANI SINCLAIR And we're much closer now than we ever were when we were children. We've become much closer in our 30s and 40s. SHERRY PEDERSEN I remember Lani calling me on my 44th birthday and saying, you know, you made it. And on my 45th birthday, thinking, I'm now living the longest of any of the females in this side of the family. And so it seemed like an accomplishment to turn 45, that that ... we felt that maybe we'd beaten it. And you know, 45 came, and it's like, all right. Things are going really well. And then I turned 46 and then shortly after that was when I found out I had the ovarian cancer. LANI SINCLAIR So the year, I turned 44 in March and she was diagnosed with cancer in April, so then it didn't mean anything anymore and I thought, then I thought, I can get cancer anytime. So what if I've gotten past the age for my mother? So did my sister, and so, then the age meant nothing. SHERRY PEDERSEN I already knew I had ovarian cancer and from what I had read and learned, I suspected it was related to my mother's breast cancer. But the only way to be sure was to get involved in the testing. NURSE Your name, please. LANI SINCLAIR My name is Pedersen. And I? SHERRY PEDERSEN We submitted a family history questionnaire to the National Institutes of Health to see if we qualified, even, to be considered in the genetic testing. When we went to the National Institutes of Health, we learned that there are two breast cancer genes, BRCA1 is breast-ovarian, and then BRCA2 is breast cancer only. If my mother, if her breast cancer had been caused by the BRCA1 gene, that each of us had a 50% chance of inheriting that gene. And if you do inherit the mutated gene, you have an 85-90% of developing breast cancer, and you have about a 50% chance of developing ovarian cancer. But that still leaves the chance that you don't develop either cancer. By the same token, if you don't inherit the mutated gene, you have the normal risk, which for a woman over her lifetime is about one in nine, or 11%. Part of being in this program made me feel like I was directly combating the cancer, doing something positive and something very assertive, and brought back some of that feeling of control. In addition to feeling that even though it didn't make a big difference for me, that it might make a big difference for my family. TECHNICIAN The blood that you're volunteering is used not only for this testing but could be used for the research. SHERRY PEDERSEN So then I received my notification that I do indeed have the gene responsible for my cancer and for my mother's cancer and my grandmother's cancer. And then I had a counseling session talking about how I felt about that, did it make any difference to me. How I felt about the rest of my family, what was ahead, what did I need to think about in the future. SHERRY PEDERSEN Well, you probably know that I, that it was not a big surprise to me that my results were positive. SHERRY PEDERSEN I think I've probably believed that all along, and I also feel a sense of relief in a way, knowing that now I have a reason, a concrete reason that this is what happened to me, this is why it happened to my mother and my grandmother and my cousin and that there's nothing any of us probably could have done to change it. There's no guilt or responsibility that if we had done something different, our lives would have changed. That's a real comfort In a way to know why it happened. BARBARA BIESECKER Have you thought about other options at all along the way, like prophylactic mastectomy? SHERRY PEDERSEN I've thought about it, and I think at this point, I want to make sure that I get to five years past the ovarian that I'm going to survive that and do well with that. The thought of having a prophylactic mastectomy and then dying a year later from ovarian cancer is not too appealing. So when I'm sure that I've gotten through this, then I will consider it. BARBARA BIESECKER I think there's, in choosing to be tested, I think there's a sense of control, and on a cynical day I might say a delusion of control, that if we know this information, we can somehow master it in a way that not having it wouldn't have allowed us to do. If it provides reduced anxiety and it causes people to have greater day-to-day satisfaction, then it's worthwhile for that person to know, but the very academic question is, does it ultimately make any difference to know? At this day and age, probably not. LANI SINCLAIR I was desperate to know. Once I discovered that I could find out, I really wanted to know. I didn't think it was possible to know, and once I knew it was possible to know, I realized it would make a tremendous difference in terms of whether or not I needed to have surgery, preventive surgery. Whether or not I needed to maintain the screening that I was having, whether I had to maintain my constant paranoia about every pain I had in my abdomen or every time I had indigestion. And worrying about whether or not I had this mutation that I might pass on to my daughter. I went in about three weeks ago. I've had a lot of time to get ready. Obviously I wouldn't have done the testing if I hadn't been ready for the results anyway, but I wanted to be really ready. And I was. I had a list of questions that I was going to ask with either results and I was prepared. I had felt that I did not have the mutation, again, irrational but it was optimistic. But I knew that I, that wasn't very scientific, but I really needed to know, but I ... I went into it thinking I would be OK, but I really needed to know, so I was prepared. But Terry told me that my results were negative, I said, well, what does that mean? Sometimes there are tests that are negative, which means that that's not what you want to hear. She says, you don't have the mutation that's in your family. And I then felt like I couldn't hear anything else she was saying. SHERRY PEDERSEN Lani called me right after she got her test results. I knew that her results were in, but I didn't know when she was going to go get the results. And she called me at work and told me that they were negative, and I was excited for her, happy for her. And then later, it sort of sunk in that I was mostly happy for her and there was a part of me was, I guess, sorry for myself or sad for myself, or ... I mean, I guess you could say it was unfair but there's nothing about it that's fair anyway, so it wasn't that. And she sent me some flowers that was, with love and thanks, which made me feel very guilty, because here I was having these little evil thoughts about, you know, it's not fair that she doesn't have it and I do. BARBARA BIESECKER Have you felt differently than you anticipated feeling since you've gotten your results? LANI SINCLAIR I really thought I was, the main thing is I thought I would feel so overjoyed and I would want to tell everybody in the world, and I may, but I don't right now. I'm finding that it's taken me a long time to absorb it, the impact of the results, and I don't understand that because they're great results. I should be really happy and that should be it and it should be very simple but it hasn't been simple and I don't fully understand that. I still worry about my sister and I want to make sure she really gets through this, and she's doing really well but I want to make sure that she does well and my results still don't nullify what happened to her or my mother or my cousin or my grandmother. So I feel like they're, things are OK for me but there still may be a lot of other cancer in my family. And if everybody tests ... . BARBARA BIESECKER What I've come to learn from the amount of work that I've done so far is that positive results are not necessarily the worst thing in the world, and that negative results are not necessarily good news. When we give results to somebody that they've quote, been spared in the family, they may feel tremendous relief and ecstasy, but it's short-lived, because what happens quickly after that is, why was I spared and everybody else in my family, my sister, my mother, weren't? What did I do to be in this situation? Why can't I trade my circumstances with my young niece, who shouldn't have to face this? These are results within a family. They don't stand alone. SHERRY PEDERSEN Since I got my results in January, they did a routine blood sample, and we got the results from that blood test and I still have ovarian cancer. The doctor doesn't know if it's something new or something residual left over from three years ago, but we decided that I needed to go through another round of chemotherapy. ATTENDANT Now, how old were you when cancer was diagnosed? SHERRY PEDERSEN I was 46, three years ago. ATTENDANT So your birthday's coming up. SHERRY PEDERSEN Yeah, I'm going to be 50 on my next birthday. ATTENDANT Fifty. When's your birthday? SHERRY PEDERSEN February. ATTENDANT February. You got your CA125 back, right? SHERRY PEDERSEN Yeah. It's been the last, since the last three treatments, it's been in the normal range. SHERRY PEDERSEN When I found out that I was going to have to start the chemotherapy again, it was about the same time that my cousins received their notification that they were negative. Finding out that I was the only one that has the mutation of the gene, I went through a period of feeling sort of very isolated and unique and remote from my family and friends and that was a difficult time. LANI SINCLAIR Now that Sherry is not doing as well, it makes it much harder to have my results because we're not coming at it form the same place. You know, before we were both very healthy, and she was in remission. And now that she's not, we're in different places, and that makes it harder for me. Although I know on a rational level it doesn't do anybody any good for me to have the mutation and have cancer along with her. I mean, that doesn't help anybody, but I somehow feel like, I guess it's survivor's guilt, it would be the same kind of thing. I feel like I'm kind of out here on my own, not in the same place as my sister. SHERRY'S HUSBAND Morning. SHERRY PEDERSEN Morning. SHERRY'S HUSBAND How are you feeling today? SHERRY PEDERSEN Not bad, not bad. I feel pretty good. A little tired and I'm not sure about what I want to eat. You know how sometimes like my sense of taste and smell and stuff is a little off, so I don't think I'll have pancakes with you, I'll probably just stick with a bagel. And no coffee this morning. I don't think I can take the smell of coffee, so tea OK with you? SHERRY'S HUSBAND Yeah, it's fine. SHERRY PEDERSEN Here's some melon. SHERRY'S HUSBAND Thank you. SHERRY PEDERSEN So, what's the latest scandal? SHERRY'S HUSBAND Oh, same old, same old. SHERRY PEDERSEN I'm not in that denial that my life is ever going to be the way it was before. It's not. And I realized that there are things that I have to come to terms with, whether this round of chemotherapy works or not, I've done a lot more thinking about what will happen if the chemotherapy doesn't work, what I want my death to be like, how far I'm willing to go, what I'm willing to put myself through to stay alive, at what point I just want to say, forget it. And it's also made me think about the people around me and my family and my support group and what I can ask of them. LANI SINCLAIR Sherry's going to get through this, and she'll be fine. I think she's, I think her prognosis is good and she's determined to fight this and I'm sure she will. What can I say? TEXT SCROLL Sherry finished chemotherapy in October 1996, but she won't know whether it worked for some time. She still faces an increased risk of breast cancer. In 1996, several companies began offering BRCA1 and BRCA2 testing to the general public. One company's test for both genes costs about $3000. Continue to Extreme Measures.