Angelina Jolie brings home a frightening dilemma

Angelina Jolie says that she has had a preventive double mastectomy after learning she carried a gene that made it likely she would get breast cancer. Picture: AP

“I ran to the computer and Googled Angelina Jolie. Up came the news that she had had a preventive double mastectomy. I read the story from top to bottom.”

Just like the 37-year-old Hollywood star, Helliwell, from Edinburgh, carries the BRCA1 gene which brings an 85 per cent risk of developing breast cancer. Seven years ago she went through the same procedure. Helliwell, now 43, has also had her ovaries removed; Jolie is having that procedure performed next. Unlike the actress, who used the New York Times to tell the world about her decision, Helliwell discussed it with friends and family and that was it.

As she watched the headlines unfurl, her initial reaction was to feel sympathy for the screen goddess and UN goodwill ambassador with a net worth of $120 million who is soon to become Mrs Brad Pitt. “I’ve been there myself. It’s not nice news to receive that you carry the gene. You can have your breasts removed but the gene is with you forever.

“I wasn’t surprised that she did it, or that she decided to tell everybody about it,” Helliwell adds. “She has the confidence to speak out and to say that it doesn’t change us, or make us ugly, or deficient, or anything else. We are still the same person.”

Jolie’s decision to talk openly about choosing to have a preventive double mastectomy has delighted the professionals who deal with cancer on a daily basis. TV personality Sharon Osbourne and pop singer Michelle Heaton have also discussed their operations, but Jolie operates on a different level. She is an international figure, a famous beauty whose sexual magnetism formed the basis of her early success. Despite deliberately moving her career away from those early “tits and teeth” roles, and finding domestic stability with Pitt and their rainbow family of six children, she is one of the most famous and desirable women in the world.

“We laud Angelina Jolie for what she has done, it was extremely brave,” says Caitlin Palframan, head of policy at Breakthrough Breast Cancer. “It can be very difficult for women to explain why they have a preventive mastectomy. They can feel judged. But now they will be able to refer to what Angelina Jolie has done.”

Breast cancer, the most common form of the disease, affects one in eight women. It’s caused by a faulty gene in only 5 per cent of them, meaning the BRCA gene is present in just 1 per cent of the population. For those with it, the chance of contracting breast cancer is around 85 per cent. Jolie’s doctors estimated her probability at 87 per cent. Around 50 per cent of BRCA carriers also develop ovarian cancer.

Even faced with such compelling numbers, a preventive double mastectomy is a daunting procedure. When the gene mutations were discovered – BRCA1 in 1992, BRCA2 in 1995 – there was no clinical evidence to support removing two healthy breasts. How could there be? No-one had had a preventive double mastectomy for those precise reasons before. Instead, there was a gut feeling among women who carried the gene that radical surgery was the right thing to do. Now, as time has passed and it’s possible to compare the outcomes of women who have had preventive surgery with those who haven’t, things looks different.

“A preventive double mastectomy reduces the gene carrier’s risk by 95 per cent,” says Jackie Harris, a clinical nurse specialist at Breast Cancer Care. “That is better odds than the rest of the population. The benefits are very clear.”

These numbers come at their own cost. “Young women and girls might be very aware that there is a genetic fault in their family,” explains Harris. “They find being a gene carrier isolating. They might well have lost their mothers very young.” (Jolie and Helliwell’s mothers were both 56 when they died.) “This impacts on their whole life. They have to make enormous decisions, like when to have children, before they might be ready.”

Studies of young women who have had a preventive double mastectomy in the US reveal the internal struggle of single life after such a radical, body-altering procedure. “When you are dating someone new, when do you mention that you have a genetic fault?” asks Harris. “When, exactly, do you tell him that you have had your breasts removed?”

No such worries for Jolie, who describes her long-term partner Brad Pitt as “so loving and supportive”. He was, she reports, “at the Pink Lotus Breast Center, where I had my treatment, for every minute of the surgeries. We managed to find moments to laugh together. We knew this was the right thing to do for our family and that it would bring us closer. And it has.”

The Pink Lotus Cancer Center in Beverly Hills has no price list on its website, but it’s safe to assume that treatment like Jolie’s does not come cheap. The test to determine whether or not she carried the BRCA gene cost $3,340. Her series of three operations – nipple delay (which rules out cancerous cells in the milk ducts), the two mastectomies and then reconstruction – would certainly carry an A-list price tag.

Jolie is candid about cost as a barrier to testing and treatment. “Breast cancer kills some 458,000 people each year, mainly in low- and middle-income countries,” she writes in the New York Times. “It has got to be a priority to ensure that more women can access gene testing and life-saving preventive treatment, whatever their means and background, wherever they live. The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.”

Not here. Throughout the UK, the BRCA test is available on the NHS to people (men can carry the defective gene as well as women) who have an obvious family history of breast cancer and a living relative who has survived breast or ovarian cancer. If the relative tests positive for the gene, the other test can go ahead. There are four genetic testing centres in Scotland, with a 12-week wait between GP referral and an appointment at a family history clinic. If genetic tests are required, the results are available within 40 days.

NICE, which provides clinical guidance for England and Wales, is about to loosen the eligibility criteria for genetic testing. At the moment it’s only for those who have what they define as a “strong” family history – two blood relations diagnosed with breast cancer before the age of 50. As of June, it will also be available to those with a “moderate” family history – one relation diagnosed before she was 50. The NICE guidelines do not apply in Scotland.

James Jopling, Scotland director at Breakthrough Breast Cancer, said: “On the whole, genetics services across Scotland work well with a good level of quality provision. Some anecdotal reports suggest there may be inconsistency in the provision of MRI screening for those younger women with a very strong family history of breast cancer, some of whom will have the BRCA gene.

“This type of screening has been shown to improve early diagnosis of breast cancer in this group and some women may choose this option rather than undergoing drastic risk-reducing surgery.

“We will be investigating this inconsistency as it is vital that there is equitable access to MRI screening for all eligible women in Scotland.

“It looks likely that the introduction of new NICE guidelines in England will mean more women will be eligible to be tested for faults in the BRCA genes. We welcome this and hope Scotland will follow in due course.

All Wendy Helliwell’s treatment was through the NHS. Her mother, who had breast and ovarian cancers, died in 2001 when the genetic test for BRCA was a very new technology in the UK. “My mum did not have the opportunity to find out what the future held for her,” says Helliwell. “But she gave blood samples when she was in hospital so that I could find out. In the last conversation we had, she told me to follow up these blood tests.”

Helliwell had already met her partner (who is now her husband) and they had a two-year-old son when she had her double mastectomy. They got together nine months after her mother’s death, so he knew the family’s history. And, having seen her mother’s suffering at first hand, even before she had the genetic tests, Helliwell had no doubts about how she would proceed. “The day my mum died, my decision was made,” she recalls. “If I faced the same fate, I would have preventive surgery.

“It’s not about me and how I feel and how I look, it’s about being here for my little boy. And now my little girl, who was born two years after the operation.”

When the confirmation that she carried the BRCA1 gene came, Helliwell was ready. “It was very emotional and very scary. I was in tears. But once I got my head around it, I was making decisions based on information and knowledge. I’d never really thought I was a strong person. I used to be squeamish about things like scars. But knowing exactly what the situation is, and then being able to do something about it, was so much better than having a huge worry hanging over me.”

In fact, she was impatient to get started. “I wanted the surgery yesterday. I had to wait for six weeks. That was the most horrible bit. I was a full-time mum and I had to put Ollie, who was only two and oblivious to everything that was going on around him, into full-time nursery because I knew I wouldn’t be able to look after him after the operation. I wouldn’t be able to lift him up. And I knew if my mum was still here, she would have taken him. That was tough.”

Seven years and another baby later, Helliwell is sure she made the right decision. Her reconstructed breasts do her just fine. “Before the mastectomy I was not that blessed in that department. After the procedure I went up a size. Cosmetically I’m very pleased. The scars are big but they don’t bother me. Overall they’re a good shape, they look good in most things.

“I would urge any woman who has any concerns not to hesitate to discuss them with her GP,” Helliwell adds. “The other side is not as scary as it looks and sounds. The peace of mind outweighs any surgery.” «

Twitter: @MsABurnside

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