Angelina Jolie may not have gone far enough to prevent cancer
Dr. Steven Narod, the foremost expert on BRCA gene mutations and their links to cancer, says the actress’s dramatic double mastectomy is only a good start
Deputy Editor Amanda Borschel-Dan is the host of The Times of Israel's Daily Briefing and What Matters Now podcasts and heads up The Times of Israel's features.
Unlike the rest of the world, for Dr. Steven Narod, Angelina Jolie’s “shocking” prophylactic double mastectomy is merely a good start.
However, though he expresses frustration with the global fascination with “one French-Canadian BRCA carrier living in LA,” Narod does not minimize the trauma of the mastectomy and the decision to undergo it.
“The mastectomy is easy, the reconstruction is hard. If you want the breasts to have the same appearance, it’ll be difficult; nipple sparing is hard. Any time you’re dealing with blood supply, it’s difficult,” says Jewish-Canadian Narod, the foremost researcher of BRCA gene mutations in the world.
Noting that, with her vast resources Jolie’s results are not typical, he says ironically, “I’m sure Angelina Jolie’s breasts are just as good as they ever were.”
But the implication is she shouldn’t have stopped there.
“She didn’t ask me, but I would have recommended an oophorectomy [removal of the ovaries] as well,” says Narod, a professor at the University of Toronto and director at the Women’s College Research Institute’s Familial Breast Cancer Research Unit.
In a soon-to-be-released study, Narod’s team finds that a preventative oophorectomy in women carrying the mutation reduces death from breast and ovarian cancers by 70 percent.
This is logic even laymen can grasp: Obviously it is easier to prevent cancers than detect them. Removing the potential locations of the cancers almost always defeats them.
Narod was on the team of scientists who discovered the link between Ashkenazi Jewry and the BRCA mutations in 1995. He promotes widespread genetic testing, not today’s healthcare standard that is based on family history and primarily targeted at Ashkenazi Jews, women of French-Canadian descent and residents of the Bahamas. In Jewish women, the mutation is linked to 12% of breast cancers and 40% of ovarian cancers.
Citing Jolie, Narod says she is a typical potential candidate for genetic testing. Jolie’s maternal line is French-Canadian: Her grandmother died at 45 of ovarian cancer and her mother at 56 of breast cancer.
However, Narod’s wholesale testing, paired with aggressive prophylactic surgery, would potentially have prevented the first case, Jolie’s grandmother.
The practical options for women who carry the BRCA mutations are few: preventative surgery; a five-year drug therapy treatment with Tamoxifen, which statistically decreases cancer outbreaks by 50%; or increased monitoring, preferably with sensitive, but expensive, MRI technology, in a wait-and-see approach.
In the United States, some 35% of carriers choose to have prophylactic mastectomies, whereas 25% do so in Canada, and only 11% in Israel — well under the European average.
Narod sees prophylactic surgery as the best option.
“When a woman has a mastectomy or oophorectomy, she has a tremendous sense of relief… If you take a pill, you don’t feel that. If I give you a pill you have to take every day for five years, you don’t experience that transformation. And there are so-called side effects — weight gain, weight loss, whatever. So women end up saying ‘Screw it,’ ” and don’t complete the course.
Narod admits an oophorectomy obviously curtails reproduction — as does the drug therapy, since women are forbidden to become pregnant while on it — but advises carriers of the BRCA1 mutation to undergo this procedure by age 35, and those with BRCA2 by age 40.
In a world in which women are increasingly waiting to start families, these numbers are not insignificant.
The age factor is one compelling reason Narod suggests testing all Israeli women when they enter the IDF, or at least offering the screening at that age. Thus, young women could be aware of a potentially earlier fertility deadline than menopause when making lifestyle choices after their demobilization.
In Israel, Narod finds his natural data pool. Twelve years ago, Narod approached one of the country’s health providers and offered to include all its female patients in his burgeoning Jewish genetic testing study and to underwrite all costs.
Narod says the provider declined, saying it didn’t want to “generate a lot of anxiety,” even though “the evidence is overwhelming that testing would be a useful thing to do.”
‘The evidence is overwhelming that testing would be a useful thing to do’
“It is natural to do it in Israel… natural to offer it when women go into the army,” says Narod, just as the testing for Tay-Sachs and other Jewish-linked genetic diseases are sponsored. “Israel is about 10 years behind.”
Instead, Narod’s groundbreaking work was completed in Canada.
Today there is more awareness in Israel, including an NGO called BRACHA (“blessing” in Hebrew) for BRCA mutation carriers. The organization is multilingual and sponsors lectures, conferences and one-on-one volunteerism. The website includes the latest research and support group forums.
As the most-cited researcher in the world in the field of breast cancer, Narod is currently actively promoting wholesale testing in Canada for the BRCA mutation. When asked what the chances are for the tests to be included in the Canadian health basket, he says optimistically, “Check back in six months.”
In the US, however, there are more obstacles, including the current patent case pending in the US Supreme Court. Myriad Genetics Inc., which sells the only BRCA gene test, is attempting to patent the gene, which could, opponents fear, stunt research in this area.
Narod says, “I’d like to see the cost of genetic testing go down to make it accessible for every woman. The current test costs $4,000; I’d like to see it at $200. Today, if there were no patent, it would go down to $500, and the market could probably bring it down to $200 in five years.”
‘I’d like to see the cost of genetic testing go down to make it accessible for every woman’
Narod’s research lab tests for BRCA mutations for $50. But the Canadian healthcare system is such that many of his 7,000 Jewish study subjects would not otherwise have qualified for testing, since they do not have a family history of breast and ovarian cancers.
After finding themselves carriers, many of these women who would not otherwise have known their genetic status have taken prophylactic measures. Some 90% of the subjects with the mutation have since undergone an oophorectomy, and 35% have had a mastectomy.
And in the US, where healthcare is basically privatized, there is a system of what Narod considers excessive steps, mostly to increase job security, he claims. There, Narod was “rebuffed.”
Instead of outright testing for the BRCA mutation in the US, “the way it’s done is nonsensical,” says Narod, and patients must meet with a genetic counselor, which increases the expense by at least another $200. The counselor is the one who will then refer them for testing.
Narod says that “99% of the results will be negative.” Check first, and counsel those who are positive after, reducing millions of dollars during widespread testing. “But hospitals found it wasn’t profitable,” continues Narod.
Is there an affordable widespread solution?
“Look,” says Narod, losing patience, “if you had a genetic testing program in Israel and all you did was test women at age 35 and did that single operation [oophorectomy] — a one-day procedure, potentially without much follow up — that single operation will reduce cancer deaths by 70%.”
But it is still much more exciting to speak about Angelina Jolie’s breasts.
