Charlie: Something is bothering you, Beth. What is it?
Beth: I just read a newspaper article about a test for a breast cancer gene. I guess with moms diagnosis, Im worrying about it.
Charlie: But shes a lot older than you.
Beth: When mom was first diagnosed with cancer, she was my age. I remember it, I was 13 years old. It wasnt easy. And I never told you my grandmother died from ovarian cancer.
Charlie: So what did the article say?
Beth: Apparently there is a special kind of cancer that runs in families. If you have a certain form of this gene, youre at a high risk of getting breast cancer. Now they have a test for it.
Charlie: What do they mean, high risk?
Beth: I dont know. At least you know that youre more susceptible. Or you find out that youre safe.
Charlie (Kindly): So go get the test if itll put your mind at ease.
Beth: But thats just it. I dont know if it would make me feel safer. What if I find out that I do have it? Ill feel doomed.
Charlie: I think we should find out as soon as possible. Youve got a cloud hanging over you as it is.
Beth: A cloud! Do you know how worried Ive been all these years? Thats why I was so confused about taking birth control pills. At first, they thought it would increase the risk of getting breast cancer, so I didnt take them. Now, I read that it can actually lower the risk of ovarian cancer.
Charlie: Wouldnt you feel better if you knew for sure about that gene?
Beth: I just dont know.
GC: Id like to make sure we all understand what we are here to discuss.
Mother: Its because of me, isnt it?
GC: Beth is interested in having the BRCA1 and 2 genetic tests. These tests help us identify women who have a genetic predisposition toward breast cancer and we find that we can get more information to help us understand Beths situation if we first test family members who already have cancer.
Mother: Ive already been through the ringer with this disease. What possible good is this test going to do for me?
Beth: This test is for me, Mother. I have a right to know. And for the sake of my family.
Mother: Im already the family outcast, the one with this condition, who has passed it on to all of you.
Beth: No one is blaming you, Mother. This is just something our family has to deal with.
GC: Lets not get ahead of ourselves. The first step is to understand what such a test can tell you and then decide if this is information that you want to know.
Mother: What if the family doesnt want to deal with it? Your sisters, aunts, and cousins might not want to know all this stuff. Itll be one more thing to have a big family ruckus over.
GC: You will decide who you want to tell. Now, we will encourage you to tell your relatives because the information can be useful to them regardless of the result. I can help you think about how to tell them if you decide you want to.
Mother: And if I take the test and it turns out that my cancer was related to one of these mutations, what will you do?
Beth: Well, Id continue to watch carefully for any signs of cancer, and Id get Jennifer tested. Shes my teenage daughter.
GC: I can understand your concern about your daughter. But there are several reasons why we do not offer testing to children under 18 years of age—the foremost being that the test results wont change the care we give Jennifer.
Mother: The world has gotten so complicated. I dont know that more information is better. But you are right, I should get tested so that you can have a better idea of what to do. My sister has been wondering if shes at risk, as well. After everything Ive been through, Ill be able to handle this information.
Beth: I really appreciate this, Mom. I want to know. Ill either be relieved, or Ill have something real to worry about.
GC: Beth, the results show that you and your mother have the BRCA1 mutation.
Beth: Hmm. I had a feeling about this after my mothers test was positive. So what does this mean for my family and me?
GC: Two things. For your family, it means that you could have passed this mutation to your children. For your own health, it means you have an increased risk of developing breast and ovarian cancer and possibly at a younger age.
Beth: Is there anything I can do? I mean, to improve the odds?
GC: You can continue to watch yourself closely and get regular checkups. We might want you to start having mammograms earlier than you normally would. If you do develop cancer, early detection greatly improves your chances that the treatment will be effective. In addition, some people consider preventive surgery, but that is a tougher decision to make.
Beth: I see. I know my sister is going to want to get tested. If her results are negative, does that mean she is safe?
GC: If she doesnt have the mutation, then her chances of developing breast cancer are the same as other women without the mutation.
Beth: What about my children? I am wondering how much I should share with them.
GC: Your son and daughter each have a 50 percent chance of having the mutation we see in your family. You may want to think about whether you want to share this information with them. Children vary in how interested they are. Remember, they're not candidates for testing because nothing at this time indicates that we would change their medical care in any way.
Beth: Youre right. I need to think about all of this for a while. Jennifer would probably want to know. But my son is only 12. I'm not sure if he would see how this affects him.
GC: Beth, please just take your time with this news. We can meet again to discuss how youre doing and what you want to tell your children, okay? Do you have any concerns?
Beth: Its just that now I feel so different from other people.
GC: Everyone is different. Just as people vary in their physical appearance, they also vary in their susceptibility to disease. What you are feeling is perfectly normal. It may take a while for you to accept it. Give yourself some time. Talking with some of your family members, even your mother, may help.
Beth: At least now I know some of the cards Ive been dealt.
Charlie: I felt the oncologist was encouraging. Its really good that we caught it early.
Beth: Ever since Mom got her results, I knew I was going to have the mutation, too. I knew this was going to happen.
Charlie: Well, its just the roll of the dice.
Beth: Yeah, just chance. . . . It was a relief that Aunt Susan tested negative for both genes. At least my cousins dont have to worry. And now that I know that I have cancer, Im actually a little relieved.
Beth: Now I can focus on something specific. You know, Id been thinking about having both my breasts removed, even before the cancer. Now I have a real reason to do it.
Charlie: Beth, youve got to stay positive. Medicine is getting better. They have a whole treatment plan worked out for you. They said there wasnt any trace of cancer in your other breast.
Beth: But the risk is high.
Charlie: Well, we have time to decide about that.
Beth: I know Jennifer is going to take this hard.
Charlie: Shes a strong girl.
Beth: You know, we probably should tell her about my positive gene test, too. I know we felt that she was too young when I got tested, but now maybe she really should get the test.
Charlie: Shes barely 19, shes doing so well in college. This is going to be a lot for her to handle all at once.
Beth: But I wanted to know everything I could.
Charlie: Shes still young. Weve got some breathing room. Lets just take things one step at a time.
Jennifer: You seem to be back to your old self.
Beth: Yeah, I feel good. I didnt know it would take so long for my energy to come back.
Jennifer: You look great, too.
Beth: Thanks. Its been a year since the lumpectomy, and so far, it looks like Ive been cured. How about you? Have you given any more thought to the test?
Jennifer: Sure, I think about it. Im young and I live my life like Im at a high risk anyway.
Beth: Youve been doing the self-checks?
Jennifer: Of course, once a month. And I go to the doctor twice a year. The nurses even know the name of my cat.
Beth: We were so worried about how youd handle all this information.
Jennifer: Well, now Im more worried about what other people know about me.
Beth: Other people like whom?
Jennifer: You know Ive started interviewing for jobs.
Beth: They cant ask you about personal stuff, can they?
Jennifer: Maybe not, but after Im hired, I want to make sure that I get my health insurance. I dont want to go in with this test on my record.
Beth: That sounds like discrimination.
Jennifer: For the insurance companies its just business. Anyway, I just dont need to know about this gene, at least not now.
Beth: Its up to you, but I cant help still being your mother.
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