Moving forward unencumbered

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This article was published 15/05/2013 (4731 days ago), so information in it may no longer be current.

ROUGHLY 100 Manitobans every year get the same genetic test that prompted Angelina Jolie to have a double mastectomy, and that number could surge now that the superstar has gone public.

“We welcome that interest because that means people are being aware,” said Dr. Dhali Dhaliwal, the head of CancerCare Manitoba.

But, Dhaliwal stressed fewer than five per cent of all breast cancer patients have the mutation, the faulty BRCA1 or BRCA2 gene making headlines.

And, Dhaliwal said it’s important not to let genetics eclipse good prevention and other risk factors, such as obesity, late menopause and early menstruation.

Of the 100 women tested yearly for the mutated gene, a quarter test positive, leaving roughly 25 Manitobans facing the same decision Jolie made — whether to take a “watch and wait” approach involving intensive monitoring, or have a double mastectomy.

Dhaliwal said less than half choose to undergo immediate surgery. Some are too young for the risk to be acute, and others need time to come to grips with what can be traumatic surgery.

In 2006, Winnipeg health researcher Heather Campbell-Enns was facing that choice in circumstances very similar to Jolie’s.

A mother of two with an extensive family history of breast cancer, Campbell-Enns tested positive for the genetic mutation and spent months researching and weighing the options with her family.

When she decided, at age 35, to have a double mastectomy and reconstruction, she said her surgeon was visibly relieved, and she had plenty of support. But some people gently wondered if it was a rash move. At the time, she didn’t know anyone else who had faced the same choice, so it’s encouraging when people like Jolie go public with their experience, she said.

“I’ve had no regrets, ever,” said Campbell-Enns. “I felt a sense of empowerment and a sense of moving forward with my life, unencumbered.”

Her experience influenced the course of her research at the University of Manitoba. In grad school, Campbell-Enns looked at how women, especially young mothers, make decisions about their care following a cancer diagnosis. Echoing Jolie’s op-ed in the New York Times, Campbell-Enns found, among other things, decisions about surgery and treatment are highly motivated by a desire to maintain a bond with children. She is now expanding her research to include a broader age range of women, looking at the impact of social factors on health decisions.

maryagnes.welch@freepress.mb.ca

THE ANGELINA TEST: All your questions answered

What’s the gene?

There are two, actually, the BRCA1 and BRCA2, which act as tumour suppressors. If they aren’t working properly due to a mutation, there is little to put the brakes on cancer growth. Those with the mutation have between a 50 and 90 per cent chance of developing cancer.

How many women have this faulty gene?

Only a small percentage of women inherit this same faulty gene, or a similar mutated version of a related gene, BRCA2. (The name stands for breast cancer susceptibility gene). These mutations are most commonly found in women of Eastern European Jewish descent; one study found 2.3 per cent of women in that group had the mutations — about five times higher than in the general population. Other groups, including the Norwegian, Dutch and Icelandic, also have slightly higher rates.

Can anyone get the test in Manitoba?

No. In this province, you need to be screened first, and the criteria is rigorous. Doctors will look first at personal history. Are you under 35 and already a survivor of both ovarian and breast cancer? Have you had cancer in both breasts? Are you a man with breast cancer (a big red flag)? Doctors will also look at family history. Is there a close relative with breast cancer, especially someone who got sick at a young age? Those are some of the risk factors doctors look at when deciding whether a genetic test makes sense.

Is it free in Manitoba?

Yes. The genetic test is paid for by Manitoba Health, as are any preventative mastectomies and reconstructive surgeries.

What does the procedure involve?

In double mastectomies, surgeons typically remove as much breast tissue as possible. In Jolie’s case, the doctors preserved the skin covering her breasts and inserted “fillers” for the breast tissue to keep the skin elastic for reconstruction. According to Jolie, she had implants put in nine weeks later.

How do these genes increase a woman’s risk of breast or ovarian cancer?

The average woman has a 12 per cent risk of developing breast cancer sometime during her life. In comparison, women who have inherited a faulty BRCA gene are about five times more likely to get breast cancer. In the U.S., about five to 10 per cent of breast cancers are thought to be linked to harmful BRCA genes. Women with these faulty genes may also have a 15 to 40 per cent risk of developing ovarian cancer, compared to about a 1.4 per cent lifetime risk for women without such mutations.