SOCIAL ENGINEERING: ‘The Angelina Jolie Effect’

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The Angelina Jolie effect (Winnipeg Free Press, May 17,  2013):

“Mom. Do you have that gene? Do I? Have you been tested? I thought Grandma had breast cancer. Why weren’t you ever tested?”

The questions from my 27-year-old daughter were coming fast.

Angelina Jolie in her The New York Times essay on Tuesday, saying that she had had both breasts removed, and then reconstructed, after learning that she carried the mutated gene that can predispose women to breast and ovarian cancer.

And Jessie was on the phone to me.

Family history had moved the actress to get tested. Her mother died at 56 after a 10-year battle, reportedly with ovarian cancer. Jolie was told she had about an 87 per cent chance of developing breast cancer and a 50 percent chance of getting ovarian cancer.

At 37, she wanted to make sure she was around to see her six children grow up. So she made the decision to undergo a prophylactic double mastectomy. Now her chances of breast cancer are about five per cent.

She hinted in her essay that she would also have her ovaries removed at some point in the future. She is not yet 40, the deadline doctors often use. She has had time to have children.

Now Jessie wanted to have a conversation all mothers and daughters should have: Is there breast cancer in my family?

I told her that yes, my mother did have breast cancer, but it wasn’t discovered until she was in her early 70s. I think. She had a biopsy but no chemotherapy, no surgery, no radiation. I think they treated it with oral medication. I think.

I didn’t know very much. In any case, what she had was not the early onset breast cancer that is so deadly.

Her doctor promised that her heart would kill her before the cancer did; I remember that much. He was only half right. She was a lifelong smoker, and her lungs killed her.

I had grandmothers and aunts. I have sisters and lots of girl cousins. But I know little about the health of any of the women in my family save my sisters. Is there breast cancer or ovarian cancer in my family? Sadly, I didn’t have much information to share.

And now Jessie wanted answers. Why was I never tested? Should she find the $3,000 Angelina Jolie had paid and be tested?

“Tell Jessie to take a deep breath,” said oncologist Kathy Helzlsouer, director of the Prevention and Research Center at Mercy Medical Center and a pioneer in breast cancer research and the role of genetic testing.

She counsels women with a personal or family history of breast cancer and helps them make the decision whether to be tested for the mutation in the BRCA 1 (which Jolie has) or the BRCA 2 gene that predisposes them to breast and ovarian cancer. Then she walks them through the decisions that follow.

Surgery like that which Jolie and a number of other celebrities have acknowledged having? Or frequent screening? The removal of the ovaries and the fallopian tubes as well? There is, after all, no screening for that killer.

“It is a difficult decision, and it is different for everybody,” Dr. Helzlsouer said. “For most women, the hardest part is getting the news. But once they know, they can take action.”

In generations past, families were tight-lipped about cancer, especially “female” cancers. Mothers died, and children were never told why.

That does not happen so often today, but I am a good example of the general ignorance we have about the diseases in our family trees. I should have been able to answer my daughter’s questions.

My ignorance notwithstanding, Jessie shouldn’t worry, Dr. Helzlsouer said.

“Most women never get breast cancer,” she said. Of those who do, about 10 per cent have strong inherited risk factors of some kind, and only half of those have a mutation in one of the two breast cancer genes. “Most women who develop breast cancer do not develop it based on a strong inherited predisposition,” she said.

And in fact, the vast majority of women who get breast cancer survive, Dr. Helzlsouer said.

Angelina Jolie’s decision to go public with her journey will raise awareness, certainly. Young women like my daughter will call their mothers and ask questions for which we should have answers. We will have conversations about breast cancer and other health issues lurking at the family reunions, I hope.

Colon cancer? Diabetes? High blood pressure? Heart disease?

But there is another benefit, Dr. Helzlsouer said.

Women who elected to do what the actress has done — have their breasts removed when there is no sign of disease, just a statistical chance for it — often face criticism from family and friends.

“You did what?” “Isn’t that a little extreme?” “Why on earth …?”

Dr. Helzlsouer knows what this People magazine version of their journey will mean to these women.

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