Case Study 7: Extreme Measures BARBARA BIESECKER My greatest fear is about how this will be misused in the general population is that it will be marketed on a widespread basis. I can honestly imagine that if I were head of a biotech laboratory and I want my laboratory to make money, I'm going to market this to women in the general population. And there are a lot of women in our population who fear breast cancer. It's a common enough disorder that many of us have some degree of family history. What I fear is that people won't understand what they're deciding to go through, they won't understand the impact of the results, so that if they get a negative test they may then assume they're not at the general population risk, which is not true. If they come from a strong family history, they may not realize that another gene could be involved, so that they make life decisions based on a result that they don't truly understand. POLLY LISS Hi, Rose, this is Polly. How are you?... I think I'm better than you are. Your voice doesn't sound too good. Can you hold on just a minute? I'm going to put you on speakerphone, because I have to take care of some things in the kitchen. Just a minute. Rose, can you hear me? ROSE Yes, I can hear you. POLLY LISS What's the situation right now? ROSE Tomorrow I have to go up for the scan, and then Thursday I'm going to start the chemo. POLLY LISS I see. And do you have transportation to go? ROSE Yes, I do. Now I have. POLLY LISS Is your family going to help you out with that?... POLLY LISS I do a lot of volunteer work for breast cancer survivors and those who are under treatment. I'm 68 years old and I'm married. I have three children. I'm now retired. All of my sisters died of breast cancer. I am the only one remaining. POLLY LISS In case you feel like exercising your teeth. WOMAN Bless your heart. I can always... POLLY LISS My involvement definitely is connected with the instances of my sisters' illnesses and the needs that they had that are shared by most breast cancer victims. I felt that I could at least do that for others until such time as I might need to have someone do it for me. POLLY LISS Every year I have a debate with myself on how to register for the Race for the Cure. When they ask if you're a survivor, I didn't actually have breast cancer. My three sisters died from it, and I had my breasts removed prophylactically and I, for some years I register as a survivor and some I don't. I just have very mixed feelings about what I should do. WOMAN Yeah, I can see that. Half of me is prophylactically and the other was cancer, so I don't have a problem. POLLY LISS It was about nine years ago that I made a decision to have my breasts removed as a preventive measure. We were not talking about genes at that time. WOMAN Well, it'll be spectacular. If there are 200 of us in pink T-shirts and pink visors. I mean, we can't be missed. POLLY LISS Last September I gave my blood for testing. I don't expect that it's going to make a change in my life one way or the other. I chose to be tested because I thought that I wanted to contribute as much as I could to the total effort. SHERRI LISS-RITTER C'mon, let's go. Let's go where it's cool. SHERRI LISS-RITTER I think my mom was pretty anxious for us to be tested and find out the fate of her children, but I opted not to be tested because of my concern for my insurance for my family. If I never found out this information, I would not worry about it that much. I mean, I could live without knowing this information, because for me to find that out would jeopardize, I feel at this point in time, would jeopardize the insurability, the health insurance for me and my family. And with two young children, I cannot be without insurance. SHERRI'S HUSBAND I guess he's right-handed. SHERRI LISS-RITTER Good job. SHERRI'S HUSBAND Sarah's left handed. You want some more? SHERRI LISS-RITTER Hey, Sarah. SHERRI'S HUSBAND She's got a fistful. SHERRI LISS-RITTER You got enough? OK. SHERRI LISS-RITTER The difference of health insurance between myself and my mom is, I have young children and I have other people that are dependent upon me for insurance. My mom has herself and her husband and her Medicare and they're at the other end of the spectrum I have yet to reach. DAVID LISS Here they are. POLLY LISS OK. At long last. I've been in their presence for so long and never got to see them. Oh, isn't she beautiful? Is this the first time you've looked all the way through the album? DAVID LISS Yeah, I think so. DAVID LISS My interest in getting tested for the gene is, we all felt in some way or another that it would be meaningful to my mother, and that out of respect for her and concern for our family and thinking maybe in some small way we can make some kind of contribution to some of the larger issues or research being done here. POLLY LISS The testing was done last September, and I'm now getting my results. POLLY'S HUSBAND When you get here, there'll be a left turn, not a left turn, but a left-hand turn... POLLY LISS I guess I try not to think about my having passed the legacy on to my children or my sisters' having passed the legacy on to their children. But it does creep back into my consciousness. It's possible that I have passed this gene on. It's possible I have this gene and I don't know yet. I am concerned about it. I will be surprised if I don't have the gene. POLLY'S HUSBAND How do you feel now that we're here? We've talked about it a bit, now the moment of decision. Do you feel any qualms about what it is that you're about to embark on? POLLY LISS I think I do, because my palms are very sweaty, and even though I logically don't think I'm nervous, the signs are there. WOMAN Oh, hi, good morning, Polly. How are you?... Good to see you. We're going to move on down the hall to the room that we're using. You just want to come with us? POLLY LISS OK. WOMAN Thanks. POLLY LISS Hi everybody. Are we in time to eat? SHERRI LISS-RITTER You sure are. POLLY LISS Hi, Dave. DAVID LISS Hello. POLLY LISS Hi, little guy. Kiss? POLLY'S HUSBAND What you got for me, kid? Give me something... Don't give me anything. SHERRI LISS-RITTER How was your day? SHERRI'S HUSBAND It was a pretty busy day for you. POLLY LISS Yes, it was a momentous day. SHERRI LISS-RITTER A momentous day? Yes, you have something to tell us? POLLY LISS I won't beat around the bush. My results were negative. DAVID LISS Really? SHERRI LISS-RITTER Really? That's amazing. That's wonderful. DAVID LISS Your results were negative? POLLY LISS Negative. Can you imagine? SHERRI LISS-RITTER No. I really didn't expect it. POLLY LISS Amazing. Wow, what irony. SHERRI LISS-RITTER What else did they have to say about it? POLLY LISS Well, it's the luck of the draw. It just happened that I didn't inherit the flawed gene. SHERRI LISS-RITTER There's no other information on our family yet, is there? Anybody else? POLLY LISS There are some who know. And some who don't. DAVID LISS That's very good news. It's something that we never expected, and anything you don't expect is a surprise, and it's good news. And it's good news for my family directly and it gives my sisters peace of mind, it gives me peace of mind, it gives all our spouses peace of mind, and down the road our kids. You know, because this is not something they're going to have to address. DAVID LISS How much percentage chance did you think that there was that you didn't have it? POLLY LISS Maybe one or two percent. I really was stunned. Stunned, to say the least. SHERRI LISS-RITTER I just, I figured you had it. So that really eliminates our, for the most part, eliminates our possibility of inheriting it. DAVID LISS Did they talk about any kind of, a predisposition to other things that we've been talking about? POLLY LISS No, they were only testing for... SHERRI LISS-RITTER I thought my mom had the gene, my brother obviously felt that she had the gene, and I don't think anybody thought that she was not a carrier of it, and that we felt certain that we were also carriers of it. SHERRI LISS-RITTER You like that shoe? The other shoe came off. Where did the shoe go? POLLY LISS I was thinking about having had my breasts removed and the reason I did that was because it was the best preventative measure at the time. My results just put a new slant on a lot of things, a lot of decisions that had been made previously. But it still did not change my perspective. I still feel at the time I made my decisions, I made the right decisions. SHERRI LISS-RITTER There a Velcro shoe by your toe... POLLY LISS The most important thing about hearing those results is that I've not given anything to my children that is any way an imposition on their lives. They may get some other things from me that may not be desirable, but that's one thing I did not pass on. I will share my results with my nieces and my nephew. I'm sure at the time I'm going to feel an emotion that is hard for me to express now, even though I'm beginning to feel it inside just talking about it... I wish their mothers could have had the same results. But I think they will be happy for me and for my children. POLLY'S HUSBAND Very good. SHERRI LISS-RITTER Goodbye. It's wonderful news. Take care of your neck. That's great... I'm really glad to hear that. For all kinds of reasons. POLLY LISS Good night everybody, Take care. POLLY LISS Just after I found out that I didn't have the gene mutation, and on my return home in checking the mail, I had a letter from one of my close relatives and in the letter it was revealed that that person does have the gene mutation and there are children involved who do not yet know of this effect for their parent. So that's part of my reason for a mixed feeling about my news. TEXT SCROLL Polly and her daughters still face the general population risk -- about 13% -- of getting breast cancer in their lifetime. Tests for more pervasive, less predictable conditions are becoming increasingly available. What they will mean for our sense of family and future, health and disease, and free will and responsibility remains an open question. JEFFREY THOMAS We haven't had the time yet to educate ourselves, and we need to be careful that if we tell people that you have this genetic disease, they understand what that means, and that the society at large understands what that means. We can't be, we can't make one another victims of the genes we inherit.