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Stanford Web tool helps patients weigh cancer risk
San Francisco Chronicle

Four years ago, Raychel Kubby Adler opted to have a prophylactic double mastectomy because of a genetic mutation that gave her an 87 percent lifetime chance of developing breast cancer. Now, the mother of two daughters and a wellness coach in Davis is considering having her ovaries removed.

The mutation in the BRCA2 gene that led to Kubby Adler’s mastectomy also carries a significant risk for ovarian cancer. A new online, interactive tool, developed by Stanford University School of Medicine researchers, is helping her weigh whether to have the surgery now or wait several years.

By using the tool, Kubby Adler learned her risk of developing ovarian cancer may remain relatively low whether she opts to have the surgery now at age 40 or waits until she’s 45.

“It’s enough to validate that I still want to be thinking about this, but maybe I can take a breather,” Kubby Adler said. She said she would discuss the findings with her doctor.

The Stanford tool, which can be accessed from home, relies on a mountain of studies that include thousands of women with inherited mutations in the BRCA1 and BRCA2 genes, both of which are linked to a greater chance of developing breast and ovarian cancer.

Determining the odds

After entering her age and BRCA status – 1 or 2 – along with her current screening regimen such as mammogram or MRI, the patient will learn her chances of getting breast or ovarian cancer. The tool will tell her the odds of reaching age 70 without developing breast or ovarian cancer, of getting breast or ovarian cancer and surviving, or dying of the diseases.

The tool can also simulate what happens if the patient chooses a specific intervention – getting a mastectomy or removing her ovaries. The tool was designed for patients who have not had surgeries, but may also benefit those, like Kubby Adler, who have.

“This is basically an attempt to make that (decision) a little easier by running scenarios and allowing women to compare them,” said Dr. Allison Kurian, Stanford assistant professor of oncology and also of health research and policy.

Sylvia Plevritis, who developed the mathematical modeling on which the tool is based, said the idea came out of other research she has done looking at the cost-effectiveness of specific medical interventions.

“I wanted to develop a tool so we could give women just the raw numbers – the probability of getting this cancer, the probability of surviving cancer – and they could decide what that means for them,” said Plevritis, an associate professor of radiology at Stanford.

The tool’s developers acknowledge that personal history plays a key role in decision making, and all those details can’t be captured in a mathematical model.

“It really does depend on your personal experience, your values and beliefs and how you lead your life,” said Kubby Adler, a volunteer with Facing Our Risk of Cancer Empowered, or Force, a support and outreach group for women at high risk of getting breast and ovarian cancer.

Kubby Adler’s sister, who was diagnosed with breast cancer at age 36, died at 51; her mother also had the disease. “For some people, numbers are insanely motivating,” she said. “If you’ve lived through your mom and your sister and all that, it’s not just a number.”

San Francisco resident Mia Silverman, who learned at age 19 she had the BRCA2 mutation, decided to have a prophylactic double mastectomy at age 26. She thought she couldn’t wait because her mother, who had both BRCA mutations, developed breast cancer at 31 and died at age 44.

Now 30, Silverman, like Kubby Adler, is trying to decide how long she should wait to have her ovaries removed. She had always considered 35 to be her deadline of sorts, but the tool showed she may be able to wait until 40 without increasing her risk.

Starting point

But Silverman knows her decision will have to take into account additional factors, such as the finer details of her medical history.

“I look at this tool, and think it’s a really nice start,” Silverman said. “I would probably take this, plug in some values and different ages, and bring it in to my next doctor’s visit.”

That’s exactly what Kurian wants patients to do – to use it as a starting point for more discussion.

“It’s great for patients to be able to look at this on their own,” she said. “The best use of this is by patients in conjunction with their clinicians who can help them understand these numbers.”

Interactive aid

To use Stanford Cancer Institute’s online decision-making tool for women with the BRCA1 and BRCA2 mutations, go here: brcatool.stanford.edu.

To find out more about Facing Our Risk of Cancer Empowered, or Force, the only national nonprofit organization devoted to hereditary breast and ovarian cancer, go to the group’s website: www.facingourrisk.org.

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