Opinion: Angelina Jolie and the bravery of choosing not to have ovaries removed

by Masha Gessen

Angelina Jolie
arts.nationalpost

Breasts are not known to serve any biological function when a woman is not breastfeeding, and their loss has no effect on the rest of the body.

To understand just how brave Angelina Jolie is, consider what she did not write in her op-ed in The New York Times: her decision to have a mastectomy and forgo, at least for now, an oopherectomy (the removal of the ovaries), goes against common medical practice in the US and, most likely, against most of the advice she received.

The mutation Jolie carries, a deletion on the BRCA1 gene, combined with a strong family history of cancer, correlates with an 87% risk of breast cancer and a 50% risk of ovarian cancer. Either cancer is likely to be very aggressive and lethal sooner rather than later. Breast cancer is, on average, likely to strike earlier than ovarian cancer.

A preventive mastectomy brings the risk of breast cancer down to between 2% and 5%, well below the risk for an average woman with breasts but without the mutation. A preventive oopherectomy brings the risk of ovarian cancer down to the single digits as well and also decreases the risk of breast cancer – though it remains huge.

So it sounds like women who test positive for the mutation should have both their breasts and their ovaries removed as soon as possible, right?

But there are other consequences to consider. From a physical health standpoint, there do not seem to be any significant consequences to a mastectomy, other than risk reduction: breasts are not known to serve any biological function when a woman is not breastfeeding, and their loss has no effect on the rest of the body. From a mental health perspective, things seem to look good, too: in every study, the vast majority of women who opted for the surgery report they are happy with their decision years down the line.

The ovaries are different. Surgical menopause disrupts the functioning of a woman’s body in ways more sudden and even more profound than natural menopause – and does it earlier. The risk of heart disease, high blood pressure, and stroke shoots way up. The rapid aging of all oestrogen-dependent organs, which is to say the entire female body, ensues. Mental-health consequences are major as well: sleep disturbance, depression, and cognitive impairment are common.

Is all of that worth it to lower the risk of ovarian cancer? It might be, for some women, but it is by no means an open-and-shut case. And yet in the US most women who test positive for this mutation tend to have an oopherectomy, while many fewer opt for a mastectomy. Why? Because their doctors and their peers tell them it’s the right thing to do. Most oncologists who work with high-risk women in America recommend a preventive oopherectomy. In a 2012 book, the organisation Facing Our Risk of Cancer Empowered, the largest group of mutation carriers in the world, recommends that women who test positive have their ovaries removed before the age of 40.

After interviewing many doctors, I have concluded that there are three reasons they are more likely to recommend an oopherectomy than a mastectomy. First, it is because they are men, usually, and they have been taught by men – always – and work in male-dominated institutions. They believe breasts are essential to femininity and the suggestion of removing them is an insult at best. Second, it is because doctors tend to confuse the surgery itself with its consequences: an oopherectomy is a quick and easy surgery with a short recovery time, while a mastectomy with reconstruction is the opposite. The third culprit is the compartmentalisation of medicine: cancer specialists think only about lowering the risk of cancer – and not about the rising risk of heart disease, stroke, or depression.

Why do other women with the mutations insist that an oopherectomy is necessary? Mostly, I think, this is because they have trusted their doctors, had oopherectomies themselves, and do not want to consider the possibility that they have made an irreversible decision that might have been wrong.

When I tested positive almost 10 years ago, I did the research and decided to have a mastectomy but not an oopherectomy. I follow an aggressive screening protocol for ovarian cancer, which does not guarantee early detection, but I believe this is worth it – to maintain my cognitive abilities and libido, while not raising the risk of other diseases.

I described my decision-making process in a book, Blood Matters. Not a single event of my US book tour passed without someone from the audience criticising me – sometimes berating and once downright bullying – for choosing to keep my ovaries. I have received several unsolicited lectures from oncologists that I believe verged on violating medical ethics by putting pressure on me to have the surgery. I have at times been made to feel like an outcast or a madwoman.

Angelina Jolie is certain to have faced at least some of this aggressive counselling to have an oopherectomy. She has chosen to have the mastectomy for now – and to be very public about her choice. Now you know just how brave she really is.

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Read this article in The Guardian

 

Op-ed pieces and contributions are the opinions of the writers only and do not represent the opinions of Y!/YNaija

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