Flanked by G8 Foreign Ministers, US actress Angelina Jolie, in her role as UN envoy, talks during a news conference regarding sexual violence against women in conflict, during the G8 Foreign Ministers meeting in London, Thursday, April, 11, 2013. The ministers are meeting in London as Britain currently holds the G8 Presidency, with the heads of government G8 meeting set for June in Northern Ireland.(AP Photo/Alastair Grant, pool)
Tampa, Florida -- A collaborative study is taking a closer look at how genetic testing influences breast cancer patients' treatment and their doctors' decisions. This research may improve future cancer care.
Superstar Angelina Jolie had BRCA testing before undergoing a double mastectomy, and a hundred-thousand people like her are getting the genetic test to learn their breast and ovarian cancer risk every year.
The University of South Florida and Aetna are teaming up to find out what it's like as the patient goes through the process.
Dr. Rebecca Sutphen, the board-certified Clinical and Molecular Geneticist leading the new study, told us there are many unknowns that she and her team will look into.
"We really don't know what kind of information they are getting," she said before listing them. "Who are they talking to? Do they understand- is the test really relevant for them at all? Is it going to give their family answers? What are they doing with the information? If you ask them after the test, what are they going to tell you about what the test said? What are they going to do with that?"
Dr. Sutphen will lead the study as her team gets answers from about 5,000 Aetna members. The insurer asked eligible members to take part to give them a more real-world look at how patients decide their next step.
Dr. Sutphen told 10 News many people don't even know about genetic specialists or counselors, how to find one, or if it is even necessary for them.
While it's "a relatively small number of people for whom it is relevant," Dr. Sutphen said anyone concerned with the following might consider the test:
- Your family history or if there's a red flag in your family
- People getting cancer at a young age
- Multiple family members getting the same kind of cancer
- The combination of breast and ovarian cancer in the same family
- Or really just a woman who has ovarian cancer
Members of the advocacy group Facing Our Risk of Cancer Empowered are collaborating with researchers to shape their questions so the patient can best share her experience, and help researchers look at who has access.
"One of the goals in this study - although limited to commercially insured individuals - was really to try to look at disparities, because we know that there are gaps for everybody when it comes to genetic services and actually those gaps don't need to exist," Dr. Sutphen said. "You can get access to genetic specialists even by telephone from your home. On the other hand, if people aren't aware of these services, then they're not likely to access them."
It's access that, for some, could help save their lives.
If you would like to talk to a board certified genetics counselor, call FORCE's toll free number 866-288-RISK. We're told calls to that number have tripled since Jolie released her story.
*Buddy Check 10*: 10 News is helping to raise awareness about the importance of early detection of breast cancer. On the tenth of each month, we send a friendly reminder to conduct a breast self exam, and then spread the word to your friends to do the same! CLICK HERE to sign up for a monthly reminder.
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Libby Hendren, 10 News