Genetic Counselor: Hi Lisa. Hi Steve. Thanks for coming in today. The BART results came back and they are positive.

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1 Hi, I m Kaylene Ready, a genetic counselor who specializes in the education and counseling of individuals at high-risk for hereditary breast and ovarian cancer syndrome. Women with an inherited BRCA 1 or BRCA 2 gene mutation have a 40 to 87% chance of developing breast cancer, and a 10 to 44% chance of developing ovarian cancer. Men with a BRCA gene mutation are at a higher risk of developing both breast and prostate cancer. Genetic tests are available to check for BRCA1 and BRCA2 mutations. As part of the testing process, genetic counseling is recommended. The University of Texas MD Anderson Cancer Center would like to partner with you to best prepare and counsel patients for those results. In this video MD Anderson genetic counselor, Ashley Woodson, will show you both good and poor examples of how to deliver genetic testing results for hereditary breast and ovarian cancer. In our first scenario, a 33-year old woman who received negative results with BRCA1 and BRCA2 comprehensive testing has chosen to undergo BRACAnalysis Rearrangement Testing, also known as BART. Since she does not have significant family history and BRCA1 and BRCA2 comprehensive analysis was negative, she has been told that the remaining likelihood of testing positive is less than 2 to -3%. Today, she is meeting with a genetic counselor to find out her test results. Let s listen in on the disclosure conference. Scenario #1 (poor disclosure): Genetic Counselor: Hi Lisa. Hi Steve. Thanks for coming in today. The BART results came back and they are positive. Patient: But you said most likely they would be negative? Genetic Counselor: Most of the time they are negative, but the results were positive. Patient: How did this happen? Genetic Counselor: It s nothing you did. It s just that the results were positive. Patient: So does this mean I m going to get ovarian cancer? Genetic Counselor: There is an increased risk for ovarian cancer. So I ll send you guys to a doctor where you can talk more about that. Patient: So will I need to have my ovaries removed? Genetic Counselor: They ll talk to you about that there. Husband: What are we supposed to tell our daughters? Genetic Counselor: So your daughters are still young. We don t need to worry about talking about that right now. We can wait till they re older. [short pause] So as long as you guys don t have any other questions, I m going to send you home with this packet and I ll make those referrals for you.

2 Moderator Oncam: This is obviously a poor disclosure. Both the patient and her husband are surprised by the positive result. The counselor is not empathetic and does not take time to answer the couple s questions. Instead, the counselor rushes to end the appointment. Here s a look at what the genetic counselor should have done. Scenario #1 (good disclosure) Genetic Counselor: Hi Lisa, Steve, thanks for coming in today. The last time we meet we talked about doing some additional testing for the BART test. I do have news. The test results did come back positive. Patient: But you said most likely they would be negative? Genetic Counselor: Most of the time these test results are negative. But because you were diagnosed so young with breast cancer we were concerned about this test and wanted to make sure we were taking the best care of you as possible. Patient: How did this happen? Genetic Counselor: It s nothing you did. It s just something you were born with. It s nothing you could have changed. Patient: So does this mean I m going to get ovarian cancer? Genetic Counselor: There is an increased risk for ovarian cancer. So let s talk a little bit more about what the test results mean. When we know the test result is positive there is an increased risk for breast cancer and ovarian cancer. So we ll send you to a doctor where we can talk a little bit more about what some of your surgical options are. And we can also go through those in more detail today, too. Patient: Will I need my ovaries taken out? Genetic Counselor: That s what they will talk about at that appointment. But, yes, that is an option. Husband: And what are we supposed to tell our daughters? Genetic Counselor: This can be really difficult information to share with your daughters. They re still very young and we typically don t do testing until they turn 18 or older. So we can start talking about that information a little bit with them now. And we can also brainstorm some strategies about how to share this information with your daughters. So what I want to do is we can go through this information together and talk about some of your options

3 Moderator Oncam: This is a good disclosure. It includes a warning shot I have news. The patient is still surprised but is given the opportunity to discuss her feelings. The counselor is patient and empathetic. She takes the time to review all of the relevant information and resources with the couple. In addition, the counselor schedules a future appointment and provides the patient with appropriate contact information. Let s take a look at another genetic testing disclosure conference scenario. This time a 40-year-old woman with breast cancer and multiple maternal relatives with breast and ovarian cancer has undergone comprehensive BRCA1 and BRCA2 genetic testing, as well as BART. She is meeting today to discuss the results of this testing. Scenario #2 (Poor Disclosure) Genetic Counselor: Hi Vicki. Thanks for coming in today. The last time we meet we talked about doing genetic testing because of your history of breast cancer and also your family members history of breast and ovarian cancer. We talked about [that] we were worried that there might be a hereditary cause. If you remember we went about we went over testing for BRCA1 and BRCA2. We talked about the possibility of a positive result, which would mean that it was hereditary. We talked about a negative result, which means that everything is normal. We also talked about the small chance that there could be a variant result, which could mean there s a change but we don t know exactly what it means. If you remember it took about three weeks to get those test results back. Patient: Yeah. Yeah. The results are? Can you just tell me please? Genetic Counselor: Yes. Yes. It was good news. Everything came back negative. Genetic Counselor: So that s very reassuring. Patient: So since I don t have that mutation I don t have to have my ovaries removed, right? Genetic Counselor: Right. We have no reason to think we need to worry about your ovaries because your results were negative. Genetic Counselor: You re welcome. Moderator Oncam: This is a poor disclosure. The counselor reviews too much history. For example, why testing is being done, possible results, and so on. This is information that should have been discussed during pre-test counseling. The patient was getting so anxious about the results; she finally interrupted the counselor to ask what the results were. The counselor also gave incorrect information saying that the results are reassuring and [that] the patient is not at increased risk for ovarian cancer. Let s take a look at how the genetic counselor could have done a better job.

4 Scenario #2 (good disclosure) Genetic Counselor: Hi Vicki. Thanks for coming in today. Genetic Counselor: The last time we meet we talked about your history of breast cancer and also your family history of breast and ovarian cancer was concerning for hereditary cause. So we were doing genetic testing to see if we could find a reason but the test results came back negative. Patient: But that s good news, right? Genetic Counselor: Not necessarily. So unfortunately we re limited to how we can interpret the results because your family history is still concerning. Patient: Okay. Okay. So I m sorry, is there any other testing I should do? Or, my sisters, should they be tested or something like that? Genetic Counselor: Yah. That s a good question. So, for you, you ve done all the genetic testing currently available for the BRCA genes so there s no additional genetic testing we need to do for you. But because your family history is concerning we do want to follow you more closely for an increased risk of cancer. So we ll refer you to a high-risk ovarian clinic where they can talk to you about some of your screening versus your surgical options to reduce that risk of ovarian cancer. All right; for your sisters because they don t have a history of cancer themselves genetic testing wouldn t be informative for them because your results were negative. Exactly. So we re just going to want to follow them more closely just like are for you. And we can refer them to some high-risk clinics to be followed closely. Patient: Thank you so much. Genetic Counselor: You re welcome. Patient: I really appreciate it. Moderator Oncam: This is good disclosure because it includes a warning shot - I know we were trying to find a reason for your cancer diagnosis and your family history, but we did not find one your results are negative. The counselor has reviewed carefully what a negative result means. She addresses that a negative result is not necessarily reassuring in the context of the patient s family history. The counselor also reviews risk management options for the patient and family given the family history and provides resources, and contact information. Meeting both the educational and psychosocial needs of patients is critical for effective genetic counseling. We hope you find this program useful. To learn more about the genetic testing process please visit our website at There you will find several free continuing

5 medical education lectures on Hereditary Breast and Ovarian Cancer as well as CME courses covering topics from cancer prevention, to diagnosis and treatment, to cancer survivorship care. Thank you for watching this video.

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