Angelina Jolie (Photo: Rex Features)
Angelina Jolie (Photo: Rex Features)

HEALTH

The Angelina effect and why the removal of organs isn’t a one-size-fits-all solution

Preventative surgeries may be effective for some women, but we must find a better way to grant women agency and let them make a decision with all the facts they need, says Jean Hannah Edelstein

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By Jean Hannah Edelstein on

The first doctor to suggest that I should have a mastectomy was a woman, not very much older than me, which is perhaps not the doctor I expected. I’d been referred to her by a GP because of an insect bite, which, it was eventually revealed, had turned into a cyst. Thankfully, a benign one. But, while she had me in her office, the doctor — a specialist breast surgeon — assessed my risk of breast cancer. She asked me about my family history — some on either side, but with no known genetic links — did a little maths on a computer and then pulled out an insurance form, which she flipped over, because she wanted to use it as scrap paper.

“Well,” said the doctor, “your risk of breast cancer is 52 per cent.” She whipped out a pen and wrote the number down on the paper without explaining how she’d calculated it. Then she drew two lines. “So,” she said, “you have two options: you can have a preventative mastectomy or you can take oestrogen-suppressing medications.” (The latter is a treatment that induces early menopause.)

I must have looked a bit taken aback, since I’d just been given the mosquito bite all-clear.

“Oh,” said the doctor, “how old are you?”

“Thirty-three,” I said.

“Oh,” the doctor said. “Well, maybe you don’t want to do that right now.”

“Nope,” I said.

I found a new doctor, but I recalled that appointment this week, after I read a piece regarding new research about the “Angelina effect”. The research tracked trends in women’s healthcare decisions, following Angelina Jolie’s announcements in 2013 that she’d had a preventative double mastectomy and a hysterectomy. Her aim? Preventing herself from developing the kind of cancer that took the life of her mother, Marcheline Bertrand: cancer caused by the BRCA gene, of which Jolie is also a carrier. It’s no doubt a worthy and understandable aim.

But it’s not a one-size-fits-all solution. Initial studies following Jolie’s announcement found that testing for the BRCA gene had increased considerably. But the newer study also found that it hadn’t led to a remarkable uptake in pre-diagnosis mastectomies. According to one analysis, this makes sense; BRCA actually is not a hugely common gene mutation – the root of only five to 10 per cent of breast cancers – and, before the “Angelina effect”, women were rarely tested for it unless there was a clear indication of history in their family. Hence, the increase in testing for the gene following Jolie’s disclosure also resulted in an increased frequency of negative results.

What is rarely discussed in the discussion of these surgeries is the impact that they can have on women’s lives – in particular, on our sexuality

Does that mean that Angelina Jolie failed in her efforts to increase awareness of her gene mutation? Certainly not, but I do think that the conversation she’s sparked has fallen short. Preventative removal of organs to prevent gynaecological cancers may be an effective treatment for some women. For others, it isn’t. Evidence shows that many women choose to have healthy breasts removed, especially in cases where they’ve been diagnosed with cancer in one breast, but that there’s no strong correlation between risk reduction and the surgery — though it undoubtedly reduces anxiety. What is rarely discussed in the context of discussion of these surgeries, by people celebrating the Angelina effect, or by people like my doctor, is the impact that they can have on women’s lives – in particular, on our sexuality.

In this regard, I think we’re not far off from the territory trodden by people who are anti-choice. Though driven by good intentions, the presentation of radical surgery as an easy and obvious solution without concern for the broader implications to a woman’s wellbeing is not dissimilar from understanding that the best thing for women is for other people to make decisions about their pregnancies. To be clear: I don’t think that it’s a good idea to refuse surgery if evidence indicates that it will prolong a woman’s life. But I don’t think it’s a good idea to do it if you don’t feel fully informed about your options, or are pressured into the decision by a healthcare provider you don’t trust.

There’s no doubt that any woman who chooses to pursue prophylactic surgery is courageous. But it’s essential that it remains a choice that they make while feeling informed and empowered – that women maintain agency over our healthcare. By dint of her wealth and fame, Angelina Jolie — or, indeed, any wealthy celebrity — has more agency than most of us; she can pay for the best level of private healthcare. She can get access to high-level doctors without having to wait in queues and, if she doesn’t like a doctor she’s been referred to, she can likely find another whom she prefers. She can also afford to pay practitioners for excellent reconstructive surgery and to help her to alleviate the effects of early menopause.

While I don’t have BRCA, I do carry a genetic mutation called Lynch Syndrome, which puts me at high risk of developing uterine cancer. The first doctor I saw following the diagnosis expressed scepticism that I wouldn’t want to take surgical measures immediately; I left his office shaken and depressed. But, then, I spoke to a friend who said the wisest thing possible: “Don’t have any surgery until you’ve had a second opinion.”

My next doctor calmly analysed my risk and set out a screening protocol that would allow me to delay the choice to have surgery until I’ve had more time to make a decision about whether I want to become a mother, and what route I’ll take. I wish that all women could have as much access to information and choices as I have had — in large part, this is a privilege of the excellent health insurance provided by my employer in New York. I know that may be a long time coming. But I’d like our cultural conversations to focus more on granting more agency to women and the decisions that we make about our bodies, and less about expecting women to take drastic action because it worked for someone else.

@jhedelstein

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Angelina Jolie (Photo: Rex Features)
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