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What to know before getting the genetic test for breast cancer

Should you get the breast cancer genetic test?

A genetic test to find out if people are more susceptible to breast cancer is available, but how do you decide whether to get it? With a lot of thought, cautioned Dr. Nora Hansen, director of the Lynn Sage Comprehensive Breast Center at Northwestern Memorial Hospital's Prentice Women's Hospital. She explained what patients should know. For example, no medical standards dictate exactly who should get the test when. Taking the test, which can show whether people have threatening mutations in the BRCA1 and BRCA2 tumor-suppressor genes, can leave patients facing serious options, like surgery to remove breasts. If the test comes back positive, Hansen noted, there are organizations that can help, including Bright Pink. This is an edited version of the interview.

Q: How do you explain this test to a patient?

A: We have a long discussion with them. We ask multiple questions. There are questions related to their own self, in terms of when was their first period, when did they have their first child. If they're post-menopausal, at what age did they go through menopause. In order to decide should a patient be tested for the gene, you really go through a family history, and so you want to know who in the patient's history, both the mother's and the father's side, had any history of breast or ovarian cancer.

Q: How do you decide whether someone is a good candidate for genetic testing?

A: Say a patient came in to see me and her mother had breast cancer at the age of 38 and her mother's two sisters as well, and the grandmother had breast cancer too. That would be a sign that that family has a lot of breast cancer, and they're very young, which would make you think this could be gene-related.

Q: What should a patient consider before thinking about the test?

A: You don't just want to send off the blood test and find out the information. It's very important that the patient meet with a genetic counselor who would really develop this family pedigree and help decide. You want to have some likelihood that the patient would be positive before you test. If they have a very low risk of having the gene, it's not worth testing, but if they have a higher risk, greater than 10 percent, then they would get tested.

But the testing comes with a lot of implications — implications for the patient, for any family members, for the children — because it affects everyone. I have a lot of patients that don't want to know. They say they're just not ready to handle the information. They don't know what they're going to do with the information. And in some ways, if you're not going to act on the results, it almost doesn't make sense (to get the test).

Q: Is advice on whether to take the test any different for age ranges, for example, for someone 20 years old or 50?

A: We do think that most patients who have the gene develop breast cancer usually at an earlier age. For the genetic testing, you'd probably want to be tested earlier than later. I wouldn't recommend testing anyone under 20, because what are you going to do with that information? A 30-year-old doesn't get any (recommended) imaging at this point, but if we knew she were positive for the gene, we would get imaging for her at this age.

Q: Can anyone go into a doctor's office and request this test?

A: A lot of gynecologists order genetic testing, because a lot of younger women, that's their doctor. Oftentimes what'll happen is, I'll see a patient who comes in; a gynecologist ordered the test for her, she came out positive and now she has no idea what to do. Ideally, it would have been best if she was seen in the high-risk clinic first, to go through the implications of the tests. Once you have the results, you have the results, and there's no going back in a sense.

Twitter @byalisonbowen

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