Family life

Angelina Jolie and me: Testing for the BRCA1 gene

After her mother passed away from cancer, Susan was tested for the BRCA1 gene. Here's her story.

By Susan Goldberg
Angelina Jolie and me: Testing for the BRCA1 gene

A baby Susan with her mom.

Usually, I’m not a big follower of celebrity news, nor do I tend to comment on what celebrities do or don’t do. But Angelina Jolie’s recent decision to undergo — and write about — her prophylactic double mastectomy resonates with me.
Like Jolie’s mother, my mom carried the BRCA1 gene. Like Jolie’s mother, my mother also developed cancer. She was diagnosed with ovarian cancer at the age of 37 (I was nine); the tumour was so big her doctor initially thought she was five months pregnant. She recovered, but developed breast cancer a decade later. Again, she went into remission, but the disease returned once more when she was in her mid-50s. She lived with breast cancer for several years and died at the age of 59, when I was pregnant with Rowan. One of my biggest regrets is that she didn’t live long enough to meet him or his brother — or that I didn’t get pregnant early enough to see her be a grandmother to my children.
When my mother was first diagnosed, we didn’t know about BRCA1 (and another genetic mutation, BRCA2). When I was a teenager, my mother and I were enrolled in a study that identified these genes. Well before we found out that my mother was a BRCA1 carrier — and that I had a 50% chance of having inherited the mutation from her — I was being monitored twice a year for any sign of breast or ovarian cancer. In spite of the bi-annual blood tests, breast ultrasounds and transvaginal ultrasounds, I always carried a sense of foreboding: who knew if I had the gene? And if I did, when would I get cancer? In my head, it was never a matter of if.
I put off getting tested for years. Ultimately, two things pushed me to finally find out: watching my own mother die of breast cancer, and becoming a mother myself. If I was a carrier, then I was pretty sure I’d make the same decision as Jolie: prophylactic mastectomy, as well as hysterectomy and oophorectomy (the removal of my ovaries). Any reservations — and, believe me, I had huge reservations — about those surgeries paled in comparison to watching my mom go through chemo, surgery and radiation and then watching her die far, far too early. At 33, I still felt much too young to lose my mother. I didn’t want my kids to lose me, or to watch me go through treatment, if I could at all prevent it. I couldn’t change the past, but perhaps I could influence the future.
When I got the test results, I burst into tears of relief: negative. I didn’t have the mutation. My chances of developing breast and ovarian cancer were those of the general population.
I didn’t have to make the same decisions that Angelina Jolie and countless other women have had to make. I’m profoundly grateful for that. I don’t pretend to know anything more about Jolie’s decision-making process than what she has disclosed so eloquently in the New York Times — but I’ll speculate at least this much: She knows what it’s like to lose a mother. She’s seen up close what it means to have — and die from — cancer. She wants to see her children grow up.
She’s a famous movie star and international icon of beauty and sex appeal; I’m… well, not. But, on some levels, I can totally relate.

This article was originally published on May 16, 2013

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