Angelina Jolie’s decision to undergo a preventative double mastectomy wasn’t just brave, it made taking control of cancer an option we can all consider. Stylist investigates
Stylist’s acting editor Susan Riley on why Angelina has inspired her to take control of her own health
"We all wonder how our genes will affect the ultimate outcome of our health. I have a friend whose mum (and her mother before her) is currently battling Alzheimer’s. She doesn’t say it but I know my friend – during those quieter moments – undoubtedly wonders if that too will be her fate, yet to be revealed. But if it was, what can she do about it now? She’s 36. Fate is hopefully a long way off. And who can say what’s in store for any of us?
The wellbeing niggle in my subconscious is – as it is for many – cancer. My mum had ovarian cancer twice; once in her early 40s, from which she recovered. And again 14 years later; a battle she fought for two years and lost. Like many cases of ovarian cancer – not dubbed the ‘silent killer’ for nothing – there were no obvious symptoms until it was too advanced to successfully treat. As a result, the lack of warning about what lurks beneath a seemingly healthy person was, and is, the scariest and most unsettling thing in the world to me.
So it was with increased contemplation that I digested the news of Angelina Jolie’s preventative double mastectomy last week. A courageous and informed decision made by a woman just a year older than myself; a woman very much in charge of her own destiny. Because, while our lives bear little similarity other than the fates of our mothers – Jolie’s mother, Marcheline Bertrand, died from ovarian cancer at 56, the same age my mum passed away – her frank admission has made me question if I’ve been too remiss about my own health. Have I done all I can to protect myself and arm myself with information and choices as the daughter of someone who cancer targeted twice? The answer is: probably not.
Nine years ago, a few months after my mum died, I was freshly paranoid about my increased risk factor. I quizzed my doctor. What were the chances? They referred me to the South West Thames Regional Genetics Service at St George’s Hospital Medical School for an appointment where we discussed my family history. But there, as for so many women, is where my quest for reassurance and answers ended. While I wanted a guarantee that I could be monitored and screened going forward, they simply didn’t see me as high risk enough. My mum was the only person in my family that I knew of with cancer. Good odds, until you find out I don’t know the medical history of any of my female family beyond my Nana; just two generations. Nor do I have any aunts.
In the years since, I’ve remained hyper-aware – insisting for scans at the slightest complaint; highlighting my history; sounding in all probability like a total hypochondriac – but what I’ve never done is push for further testing, or delved further into my family tree or asked what other options are available to me.
Jolie’s case is a special, high-risk situation. The genetic mutation she has – BCRA1 – is not common. Her decision needn’t spark fear or unnecessary medical procedures. But she has done a huge service to us all. “For any woman reading this,” she wrote in her article in The New York Times, “I hope it helps you to know you have options... Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.” I for one, will be taking more control of my options going forward. Regardless of the genes we carry, it’s a valuable lesson for us all.
Health writer Alice Smellie investigates the risk of cancer and what we can do to target it
There are so many illnesses we try to ward off with preventative measures – TB with a jab when we’re 14, polio with a vaccination and a yearly battle with the common cold with lots of oranges. But there was never much suggestion we could do a lot to prevent hereditary diseases such as certain cancers. But increasingly scientists are discovering new ways for us to navigate the stormy seas of hand-me-down diseases such as Alzheimer’s, Cystic Fibrosis and coronary heart disease. Our age and genes cannot be controlled, but there are lifestyle options, medications and surgeries now available, which can keep us healthier, for longer.
And it’s that last option that Angelina Jolie chose. Yes, it’s an extreme decision, but one for which she’s being praised, both for bravery and for common sense (her doctor said she had an 87% chance of developing breast cancer). A call to arms if there ever was one to ensure we have some hand in our future, despite what our genes dictate. But let’s talks facts. First of all – and this is a sobering statistic – more than one in three of us will develop cancer during our lifetimes. Overall rates have increased by over a third since the Seventies for a number of reasons: we are more sedentary, drink more alcohol and consume more processed food. According to the Office for National Statistics, in 2010 almost 325,000 people in the UK were diagnosed with cancer of which there are over 200 types, each with different causes, symptoms and treatments. That’s nearly 900 people every day. But there is a glimmer of good news. Survival rates in the UK have doubled in the last 40 years. According to Cancer Research UK, 43% of men and 56% of women live for more than five years post-cancer diagnosis.
It’s thought that only around 10% of cancers are down to inherited genetic faults – certain types of breast, ovarian, bowel and womb cancers. And it’s normally due to faulty BRCA1 or BRCA2 genes.
“Around one in a thousand of the population has the faulty BRCA1 or BRCA2 gene,” says Anthony Howell, professor of Medical Oncology at the Manchester Breast Centre. “It accounts for around one in 20 cases of breast cancer.” In 2009 almost 50,000 women were diagnosed with breast cancer, so that’s a pretty significant 2,500 cases a year that are kick-started by the inherited gene.
“In the healthy body, BRCA genes make a protein. This corrects errors in DNA as it replicates during cell turnover,” says Dr Julia Wilson, head of research at Breakthrough Breast Cancer. “If the BRCA genes are faulty then DNA doesn’t correct itself. The breasts and ovaries are especially sensitive to this – so cancer is more likely to develop in those areas.”
Unfortunately, faulty BRCA genes tend to produce very aggressive breast cancers which appear earlier in life – usually before the age of 50. Plus, certain groups are more likely to have BRCA gene mutations – for instance, one in 50 of the Ashkenazi Jewish community carry them. Not only that, there is a strong link between faulty BRCA1 and ovarian cancer – as many as two thirds of women with this gene may have ovarian cancer by the time they are 75 years old. BRCA2 doesn’t have such a high risk of ovarian cancer, but may be associated with an increased risk of pancreatic, male breast and prostate cancer
“22% of ovarian cancers are down to inherited genes,” says Professor Martin Widschwendter, UCL chair in Women’s Cancer, who is supported by the Eve Appeal. Which means that 1,500 of the 7,000 cases of ovarian cancer diagnosed annually may be down to inherited mutations.
“Many people say that they have lots of cancer in their families,” says Dr Kat Arney, science information officer at Cancer Research UK. “This may be the case, but if they are completely different cancers, they are highly unlikely to be hereditary.” For instance, a Scandinavian study of around 45,000 sets of twins concluded that of the four main women’s cancers, cervical (affecting 3,400 in the UK annually) has no genetic link, but is probably caused by the HPV virus, for which, thankfully, there is now a vaccine.
Taking the test
Just as Jade Goody’s cervical cancer sent numbers of smear tests soaring, so the NHS will now be braced for floods of women wanting to know if they carry the faulty BRCA genes. But simply asking your GP doesn’t mean you’ll get checked. Genetic testing – where a blood sample is checked for genes known to cause cancer – has clear criteria on the NHS. If you have no family history, you can’t request it.
“Women can have their risk assessed by their GP according to NICE [National Institute for Health and Clinical Excellence] guidelines,” says consultant breast surgeon at BUPA, Nicola Roche. These look at the age at which your relatives were diagnosed with breast cancer (the younger they were, the more likely the chance of inherited faulty genes), whether anyone had cancer in both breasts, whether any men had breast cancer and any family history of ovarian cancer. Should you be assessed as high risk, you can choose to be referred for genetic counselling and then genetic testing.
“When cancer is diagnosed, a family history is usually taken,” says Dr Wilson. “If your GP notices a strong history they may recommend testing.” The definitions of ‘strong history’ in the UK equates to three close female relatives – if it was only your mother in recent generations that had cancer, you won’t be eligible.
Going private is unlikely to be necessary, because the NHS standard is very high and NHS guidelines recommend you never buy over the counter genetic tests. “You need to have counselling alongside testing and the over-the-counter tests aren’t always comprehensive,” explains Dr Arney. Of course, you can pay for it should you wish – at Spire Bushey Hospital in Watford, the test costs from £1,200, which includes two hours of pre- and post-counselling. For £2,500, Viavi Private Client Health Management Service provide a full breast screening and evaluation – including the BRCA tests if necessary.
The procedure itself is a simple blood test that takes from two weeks to three months to yield results. It is ideally performed on a relative who has had, or currently has, cancer, but this is not a necessity. Should it show the mutations, other family members can be tested for the specific mutation. “If it can’t be done on a family member, it’s like spell-checking without knowing which page of a book you’re reading,” says Roche.
Two counselling sessions should be offered before the test because it’s vital to consider options should it read positive. And experts agree that inherited incidence isn’t high enough to make nationwide screening beneficial. “Women with a strong family history are usually aware of it, but we’d urge anyone concerned to see their GP,” says Dr Wilson. “[Widespread testing] would be like a needle in a haystack trying to screen every woman in the UK for possible genetic mutations.”
Then comes the truly difficult part – finding out the results. Should the test be positive, there are lots of options available, all of which have pros and cons. “You may opt for routine surveillance,” says Roche. “This means regular mammograms and MRI scans on the breasts – but studies have shown that adding in MRI increases the chance of picking up cancer.” Screening for ovarian cancer is by no means so established. It involves a quarterly blood test, called CA125, and transvaginal ultrasound, but offers no guarantees.
Then there is the drug Tamoxifen, traditionally used to treat breast cancer. A number of trials showed that it lowered breast cancer risk by up to 40% in women considered to have an increased risk. “Breakthrough Breast Cancer is working with NICE to get this approved for all high risk women as a preventative option,” says Dr Wilson. “However, there are [menopausal] side effects so it will only be offered where benefits outweigh negatives.”
The third option is mastectomy and reconstruction, along with an oophorectomy (ovary removal) and not, as many women think, a full hysterectomy. “The risk of ovarian cancer doesn’t usually kick in until the age of 40,” says Roche. “It is highly likely that you can have children and then consider having ovaries removed.” If not, she recommends freezing embryos if you have a partner, rather than eggs, which gives you more chance of successful IVF.
Lester Barr, chairman of Genesis Breast Cancer Prevention, estimates that around 3,000 women in the UK with these mutations have had a double mastectomy. It’s not something any woman would rush to choose, but surgery has never been so good, with reconstructions based on implants or the patient’s own tissue.
What’s important to remember is that many cancers could be prevented (as many as one in four cancer cases in the UK), but this is down to lifestyle choices as much as screening. Cigarette smoking causes almost a fifth of all cancers and 12,500 a year are down to alcohol. Those who drink 100g of alcohol (four pints of strong lager or six glasses of wine) a day are up to six times more likely to develop oral, laryngeal, breast and liver cancer. As for both smoking and drinking heavily – you’re 80% more likely to contract certain cancers.
Plus, there is clear evidence linking being overweight or obese (having a body mass index, BMI, of over 25) to breast, colon, kidney, pancreatic and oesophageal cancers, while eating too much processed and red meat increases the chance of bowel cancer. It’s thought that 30% to 40% of cancers are linked to diet. “It’s hard to be prescriptive,” says Dr Arney, “but as a general rule, eat masses of fruit and vegetables.”
And studies show that there are lower cancer rates among the active. A 20-year study published in 2001 found a 50% reduction in the rates of pancreatic cancers for both men and women who walked just an hour and a half a week.
However, the future is a brave new world where cancer may be combated by a combination of advanced genetic knowledge and adapted lifestyle. “Epigenetics is a process whereby genes are switched on and off via reversible chemical signals which can be influenced by lifestyle,” says professor of genetic epidemiology Tim Spector at King’s College, London. “Exercise switches off the obesity gene – a good thing – whereas smoking switches off natural defences and therefore causes many cancers.”
“There is growing evidence that environmental exposures influence our predisposition for cancer both before we are born, and then throughout our lives,” agrees UCL’s Professor Widschwendter. “To use a computer analogy, our genes can be considered to be the computer hardware, whereas our ‘epigenetics’ can be considered the computer software that affects how the hardware (genes) behave.
“Our department – backed by the Eve Appeal – has started an initiative looking at non-cancerous cells in a woman’s body, to discover whether they can epigenetically predict her risk of developing and dying from cancer. This is the most promising area of research at the moment.”
Basically, we will soon be able to assess risks in accordance to our genetic make-up. Dr Arnay explains: “Eventually, each individual will be able to adapt their lifestyle to reduce their personal risk.” And that’s the lesson that Angelina has taught us; whatever ancestral genes lie in wait for us, we have the means to fight back.
“I’ll never regret my preventative mastectomy”
Michelle Gracey, 37, was diagnosed with the inherited faulty BRCA1 gene in 2005. She chose to have an oophorectomy in 2007 and a mastectomy last November. She lives with her partner, Andy and 13 year-old-son Dylan in Stoke-on-Trent
“I don’t have much in common with Angelina Jolie, but that all changed when I read her piece. My decision to have surgery was a gradual process, which reached a natural conclusion last November. I loved my breasts, and I didn’t want them removed, but I finally decided that the risk of cancer was too high. You see, initially, I thought breast cancer could always be cured. I had watched my aunt and my mother go through it twice – they were successfully treated both times – although it’s harder to treat if it returns.
After being given a positive result for the gene at 30, I was initially happy to have annual ovarian and breast screening. But as I watched my mother’s hair falling out through chemotherapy, I was terrified for her.
Even then, I didn’t decide to have a mastectomy, but it spurred me to have my ovaries removed in 2007. I was concerned that screening wouldn’t pick up the cancer, and each year, I suffered a couple of months of stress as the screening date approached, and as every year passed I was more worried that I might get bad news.
Then a contact I knew through a BRCA support website decided to have a mastectomy. Before she could have the operation she contracted breast cancer and passed away. That was it. I’d never considered that I might die. Literally, the moment I made the decision I felt as though a weight had been lifted off my shoulders.
All the way through I was given choices, right down to the surgeon I wanted – Professor Andrew Baildam at St Barts hospital, London. He even used a technique where, although my nipples were removed, the areola was left.
Do I have any regrets? Not at all. Even if newer techniques are developed – I no longer have the dark spectre of those cancers hanging over me.”