x Abu Dhabi, UAESaturday 20 January 2018

Opinion mixed over Angelina Jolie's double mastectomy

The US actress underwent surgery after learning she carried a gene that made it extremely likely she would get breast cancer, putting the preventive measures for the biggest killer of women in the UAE up for debate.

Angelina Jolie, the US actress and humanitarian campaigner, has undergone a double mastectomy. Fabrizio Bensch / Reuters
Angelina Jolie, the US actress and humanitarian campaigner, has undergone a double mastectomy. Fabrizio Bensch / Reuters
For any woman it would be a shocking decision. When it is one of Hollywood's biggest stars who announces that she has chosen to have both breasts removed to save her from almost certain death from cancer, then the world takes notice.

By going public with her decision to have a double-mastectomy, Angelina Jolie has guaranteed that the issue of genetic screening for cancer will stay in the headlines for months.

The 37-year-old actress, who is as well known for her support of humanitarian causes as for her Academy Award winning role in Girl, Interupted, usually fiercely guards her personal life - and her relationship with the actor Brad Pitt - from prying eyes.

But yesterday she laid bare her most confidential medical secrets in an editorial feature for The New York Times, explaining that the need to raise awareness outweighed her desire privacy.

As a carrier of the BRCA1 gene, Jolie revealed she had been told by doctors that she had an 87 per cent chance of developing breast cancer and a 50 per chance of getting ovarian cancer.

Like many women who inherit the so-called faulty gene, she was left with an agonising choice. To risk a lottery of death with the odds heavily stacked against her, or deliberately choose to mutilate her body.

For Jolie, who lost her mother at the age of just 56 following a decade fighting ovarian cancer, the decision was clear. As a mother of six herself, the star explained she was not prepared to see her own children lose their mother prematurely.

"Once I knew that this was my reality, I decided to be proactive and to minimise the risk as much as I could," she wrote. "I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex."

So, by April this year, she finished three months of medical procedures and reconstructive implant surgery, and is now calling for the genetic testing to be made more widely available for women who might be "living under the shadow of cancer".

The tests for BRCA1 and the near-identical BRCA2 cost upwards of US$3,000 (Dh11,000) in the US, Jolie says, putting it out of reach for many women. In the UK, it is offered on the National Health Service only to women who meet a very strict criteria. In the UAE, medical insurance does not generally cover preventive genetic testing for expatriates.

But for other women around the world, it is not just a question of money; there are also cultural, religious and region-specific scientific factors that come into play.

Information from the Centre for Arab Genomic Studies (Cags), which is based in Dubai, admits that the literature on the genetic disposition of breast cancer is limited in Arab women. It is, however, well known that the risk of developing breast cancer associated with an affected first-degree relative, like a mother or sister, is higher in the Arab world than in Western populations.

Dr Ghazi Tadmouri, one of the region's leading geneticists, says the screening schemes from the US and UK cannot simply be "imported" to the Arab world because of the differences in the most common cancer-causing genes.

"Here, the onset [of cancer] is much earlier, it affects women in the region at least five to 10 years earlier than elsewhere," he explains.

"It is also very aggressive. The time between diagnosis and death is very quick. This tells us that the mechanism controls of these cancers in the region are not the same as in the Western world.

"The genetic mutations are specific to the region. Using the same testing here might help, but it will not be as informative as it is in other populations."

Irrespective of the specific gene science, breast cancer remains the biggest killer of women in the UAE. It is often diagnosed at the later stages where the chances of cure are much smaller, and treatment much more invasive - usually a mastectomy.

Dr Tadmouri, who was assistant director at Cags in Dubai before becoming Dean of the Faculty of Public Health at the Jinan University of Lebanon, says as the rest of the world improves and increases access to screening, this region need take note and follow suit.

"We have to identify the mutations that are common in the region. We need a test panel that is more specific to the region."

Only when this has been established, he adds, can any sort of successful screening programmes be introduced. At present, people here can be tested for the same genes as those in the West, but very little beyond these.

Because of this, experts say the best approach remains routine screening and awareness.

Dr Jalaa Taher, section head of cancer control and prevention section at the Health Authority-Abu Dhabi, says avoiding the risk factors, adopting a health lifestyle and screening remain the most important factors.

The testing, she adds, also throws up a number of issues unique to this part of the world.

"Some [women] might be too worried to live their lives knowing they are likely to get breast cancer. Others may not be worried."

"For every girl or woman, to undergo a bilateral mastectomy is their own decision depending on their character or personality. Most important is that they are given all information about risks and benefits of all prophylactic options, and the decision is based on comprehensive information and proper extensive counselling."

Dr Taher, an Emirati, says she agrees with genetic testing in principal but high risk women should first be referred to a genetic counsellor to help them make a clear and informed decision.

Globally, it is estimated that about five per cent of breast cancer cases are what is known as familial cases - caused by an inherited gene. The remaining cases are caused by gene mutations which have developed over a person's lifetime. The average woman in the West who doesn't carry the faulty gene has a 12 per cent chance of getting breast cancer.

In the UAE, however, geneticist Dr Tadmouri says the number of familial cases appears to be higher than five per cent, and that this clearly also shows the need for more research.

"I have seen quite a large number of familial cases, especially occurring in the UAE. Whenever it is appearing at a young age and you go back and ask about the family history, it turns out there are other members who have had it."

There are no available statistics in the UAE about the number of women who have chosen to have mastectomies. A report published in the 2012 in the American Journal of Clinical Oncology said there had been a significant increase in the US in the rates of mastectomy performed in conjunction with immediate reconstruction between 2004 and 2008.

Last year celebrity Sharon Osbourne - wife of Black Sabbath frontman Ozzy - revealed that she had undergone a double mastectomy after discovering she also carried one of the faulty genes. It was, she said at the time, a "no-brainer".

And in Jolie's op-ed piece, she said the decision to remove her breasts was made easier because of her six children.

"I can tell my children that they don't need to fear they will lose me to breast cancer," she writes. "It is reassuring that they see nothing makes them uncomfortable. they can see my small scars and that's it. Everything else is just Mommy, the same as she always was."

For local women in the UAE, however, the situation isn't so clean cut.

Al Anoud, a 27-year-old Emirati from Abu Dhabi, says she would not undergo a mastectomy even if she was told she carried one of the genes, because the cancer "didn't come yet".

"Only when the cancer comes, then I would start treating it," she says. "For example, if they told me I might have 90 per cent possibility of having tongue cancer, would I cut out my tongue? No.

"I see [the mastectomy] as very wrong, regardless of the test result." She added that one shouldn't just rely on science to make decisions, but have faith in God's will and mercy.

Fares Al Mazroui, 19, from Abu Dhabi, says having breasts or ovaries removed when a woman is not 100 per cent sure that they constitute a threat to her life, is an extreme thing to do.

"Even if it was my daughter or sister, I would tell her to check herself and God forbid if a cancer was found, we would deal with it then," he says.

"If getting tested makes women go for regular screening then it is a good thing. Even if it runs in the family, no one should go cutting off parts of their body. Only do this when you are infected."

Women who have been affected by cancer, however, might disagree. Karina Al Muls, 58, was told two years ago that she had a 25 chance of developing breast cancer as she carried the BRCA1 gene.

The mother of four, a Muslim, decided not to undergo a mastectomy but says if the results had been as high as Jolie's, she wouldn't have hesitated.

She also agrees that genetic testing should be more accessible.

"Since my mother died I have been to see many doctors, and some hadn't even heard of the testing," she says. "For me, I would do anything to keep around for my family as long as possible."

Mrs Al Muls goes for annual mammograms and regularly performs self examinations. Her own mother died seven years ago of ovarian cancer and she is determined not to face a similar fate.

"It's important to be there for your children so I will do everything I can to stay around for them and my grandchildren.

"It says in the Qu'ran that we have to look after ourselves, people should consider this too."