Evan Agostini / AP

Angelina Jolie announced this week she has had a preventive double mastectomy.

By: Andrea Gordon Feature Writer, Published on Thu May 16 2013

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Behind the headlines this week about Angelina Jolie’s preventive double mastectomy, another issue lurked quietly in the background.

The superstar is also at risk of developing ovarian cancer, a disease that’s harder to detect than breast cancer and can be more lethal.

Women like Jolie who have inherited the BRCA1 or BRCA2 gene mutations face significantly higher rates of both types of cancer than other women. As a result, many decide to have their ovaries and Fallopian tubes removed.

Jolie’s story went viral on Tuesday when an essay she wrote about her decision to choose preventive surgery and breast reconstruction was published in the New York Times. Most of the discussion centred on her decision to have a double mastectomy and breast reconstruction in a series of surgeries over the last three months.

“The fact Jolie has gone public with this is great, and I’m hoping it will continue to highlight the BRCA mutation and the link to ovarian cancer,” said Marilyn Sapsford, Ontario regional manager of Ovarian Cancer Canada, a non-profit advocacy and research group. “It’s a much less known disease, fewer women are aware of it.”

But Sapsford said it’s critical women know the symptoms and understand that genetic testing can be a proactive choice for those with a family history. It’s also important that women who carry either of the BRCA gene mutations associated with the two cancers talk to their doctors so they understand their options for prevention.

They can also request a referral to genetic counsellors who are trained to walk them through every decision, from whether to proceed with genetic blood tests to options if they carry a risk of hereditary cancer.

report from People. com on Wednesday said Jolie plans to have her ovaries removed, which reduces the risk of ovarian cancer to less than 5 per cent.

She made no mention of that in her New York Times essay. However, she hinted there may be more to come by explaining “I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer.”

Jolie’s mother died of ovarian cancer at age 56.

What makes that cancer so dangerous is that, unlike breast cancer, there are no reliable screening tools to detect it. At the same time, symptoms mimic many typical signs of premenstrual syndrome or menopause, so women often dismiss them until the cancer is in advanced stages.

At that point, the five-year survival rate is only 30 per cent, notes Sapsford. But when caught early, there’s a 90 per cent chance of being cured, she said.

Faced with that scenario, many women with the BRCA mutation opt for prophylactic surgery, though younger women may delay until after having children.

“It’s something we recommend because there’s no alternative option for screening,” says Rochelle Demsky, one of three genetic counsellors at the familial breast and ovarian cancer clinic at Princess Margaret Hospital. “We usually advise it by age 40.”

Women with the BRCA gene mutation have a lifetime risk of breast cancer ranging from 40 to 70 per cent, and their risk of ovarian cancer is between 10 and 40 per cent. While the breast cancer risk is higher, so are chances of survival.

But it’s important to note those numbers vary according to specific family history, the location of the mutation on the gene and other factors.

Demsky stresses that decisions surrounding the two cancers are separate issues for women with the mutation. There are more options to address the risk of breast cancer. Discussion about removal of the ovaries tends to revolve around age and family planning.

As surgical techniques have advanced, women are increasingly opting for the preventive mastectomy and reconstruction Jolie chose. However, many prefer a regimen of screening through frequent mammograms and MRIs.

Breast surgery generates far more discussion because it’s more controversial and protracted, while oophorectomy to remove the ovaries is generally a day surgery through laparoscopy. Recovery time is about a week, though the side effects include premature menopause in younger women.

A blog detailing Jolie’s decisions and medical procedures called “A Patient’s Journey: Angelina Jolie” was launched Thursday by the Pink Lotus Breast Center in Beverly Hills, where she is being treated.

“Many women unfortunately do not know that BRCA gene mutations exist and could affect them,” wrote breast cancer surgeon Dr. Kristi Funk.

“As Angelina says in her article, the important thing is to be aware of your options.”