Angelina Jolie's awareness-raising revelation (mostly) praised, cancer experts say

The Globe and Mail

Actress Angelina Jolie arrives on the red carpet for the screening of the film "The Tree of Life", by director Terrence Malick, in competition at the 64th Cannes Film Festival, May 16, 2011. (CHRISTIAN HARTMANN/REUTERS)

Actress Angelina Jolie thrust a frightening, personal and often misunderstood issue into the worldwide spotlight with her disclosure that she recently underwent a preventative double mastectomy.

Many in the medical community are praising Ms. Jolie’s account of the genetic mutation that dramatically increases her risk of developing breast and ovarian cancer and her subsequent decision to have the double mastectomy. They say Ms. Jolie is helping to raise awareness and erase many misconceptions surrounding a medical dilemma faced by thousands of Canadian women.

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“I think her message is incredibly helpful and inspiring to all women,” said Jennifer Blake, president and CEO of the Society of Obstetricians and Gynaecologists of Canada.

Ms. Jolie revealed in a piece authored for The New York Times that she has a mutation of the BRCA1 gene, which sharply increases a woman’s risk of developing breast and ovarian cancer. She opted for surgery as a precaution.

“I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made,” Ms. Jolie wrote. “My chances of developing breast cancer have dropped from 87 per cent to under 5 per cent. I can tell my children that they don’t need to fear they will lose me to breast cancer.”

While some may view a preventative double mastectomy as extreme, individuals with mutations of either the BRCA1 or BRCA2 gene have much higher cancer risks than the general population.

The BRCA genes are considered tumour-suppressor genes and are supposed to prevent uncontrolled cell growth. But in individuals with the mutations, the genes don’t function properly and the risk of cancer is increased.

About 5 per cent of all breast-cancer cases and between 4 and 11 per cent of ovarian cancer cases stem from BRCA mutations. But for women with the mutation, the risks are significant: The Canadian Cancer Society says that women with BRCA mutations have between a 40- to 85-per-cent chance of developing breast cancer in their lives. Women with a BRCA1 mutation face a 25- to 65-per-cent chance of ovarian cancer, while women with a BRCA2 mutation have a 15- to 20-per-cent chance of developing ovarian cancer.

Women at risk include those with a family history of breast or ovarian cancer or of Ashkenazi Jewish descent. Women who test positive for the mutation are typically counselled about their options, which include removal of breasts and/or ovaries, taking medication to ward off cancer or undergoing routine screening.

The number who opt for mastectomies is relatively low. Steven Narod, director of the Familial Breast Cancer Research Unit at Women’s College Research Institute in Toronto, recently conducted research looking at 1,400 Canadian women with the mutations. Of those, fewer than 30 per cent went for a double mastectomy.

Reconstruction rates are also low across Canada. Toni Zhong of the Breast Restoration Program at Toronto’s University Health Network led research that found the rate of reconstructive surgery immediately following a mastectomy was only 16 per cent in Ontario, whereas it is more than double that in the United States. She attributes the difference to lack of awareness by patients and restricted access to plastic surgeons in some geographical areas.

Although some have expressed concern that Ms. Jolie’s announcement will lead a crush of women pressing for BRCA testing, many doctors and breast cancer advocates are more positive, saying her star power can raise awareness of the mutation’s existence in women who may not realize they are at risk.

“Those women could be referred for genetic counselling,” said Andrea Eisen, medical oncologist and head of the familial cancer program at the Odette Cancer Centre at Toronto’s Sunnybrook Health Sciences Centre. “I think awareness-raising for that is quite positive.”

Numerous medical experts also believe Ms. Jolie’s article serves notice that Canada needs to do more to ensure at-risk women have access to genetic testing and understand their options to reduce their risk of disease. While some provinces, notably Ontario and B.C., have sophisticated programs in place to help women undergo BRCA1 and BRCA2 testing, some oncologists say programs in smaller provinces or remote geographical areas tend to be spotty. Although the incidence of the mutations are relatively rare, this still means a small segment of the population may not understand their risks.

“Certainly there are organized screening programs, but Canada is a big country,” Dr. Blake said. “Getting access to screening is not always as easy. ... I think there is still a distance to go.”

Ultimately, women with the mutation need to make up their own minds about how to proceed, said Mark Basik, a surgical oncologist at Montreal’s Jewish General Hospital and associate professor of surgery and oncology at McGill University.

“It’s a very personal matter,” he said, adding that he saw a patient Tuesday with a BRCA mutation who was fully aware of Ms. Jolie’s piece and has no intention of getting a mastectomy.

And there’s also the issue of what Ms. Jolie didn’t do. She opted for a preventative double mastectomy and left her ovaries intact, although her piece hints that she may revisit that decision in the future. The discussion of BRCA mutations typically revolves around breast-cancer risk, as it is much more common. But ovarian cancer can be a much more devastating diagnosis, because it is difficult to detect, hard to treat and is often fatal. And among women with a BRCA mutation, removal of the ovaries can also help reduce a woman’s breast-cancer risk.

Mona Gauthier is a cancer researcher as well as a patient at the Princess Margaret Hospital. Like Ms. Jolie, she lost her mother to cancer early in her life and opted for a double mastectomy after learning she had the BRCA1 mutation. She believed she had time to have her ovaries removed, as many women are diagnosed in their 50s. But she learned in her early 40s that she had ovarian cancer. Several years later, she is still living with the disease and says it will ultimately take her life.

“We can’t ignore that part of it, we really can’t,” Dr. Gauthier said. “[Ovarian cancer] needs the awareness that breast cancer had and has.”

Follow on Twitter: @carlyweeks

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