WHEN Angelina Jolie revealed that she’d undergone a preventive double mastectomy after discovering she had the faulty BRCA1 ‘cancer gene’, the actress forced an important issue into the spotlight. But what does her story mean for other women? Abi Jackson reports.
Three months ago Angelina Jolie was, to most observers, just another rich, beautiful celebrity living comfortably in her charmed celebrity world. Behind the scenes, though, the actress was going through an extremely anxious and frightening time as she embarked on a lengthy process of surgery and recovery after deciding to have both her breasts removed to reduce her risk of developing cancer. Now she has gone public, writing about the experience in an article published in the New York Times. Within hours, the news had spread across the globe.
Jolie’s article was a touching, open account of a woman who lost her mother too early, at a time when her own children were very young. Marcheline Bertrand was 56 when she died in January 2007 from ovarian cancer, so wasn’t around to meet all of Jolie and her partner Brad Pitt’s six children. “We often speak of ‘Mommy’s mommy’ and I find myself trying to explain the illness that took her away from us,” 37-year-old Jolie wrote.
“They have asked if the same could happen to me. I have always told them not to worry, but the truth is I carry a ‘faulty’ gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer.” Jolie had been told she had an 87 per cent risk of breast cancer and 50 per cent risk of ovarian cancer.
Her motivation for having the surgery was clear – to be around for her family, and ease their worries about her health. “I am writing about it now because I hope that other women can benefit from my experience,” she added. Jolie can be certain she’s well on the way to achieving that aim. By revealing her experience, she has highlighted that nobody – no matter how rich, beautiful or charmed they appear from afar – is immune to life’s problems. And for every family, it can be a tough and heartbreaking ordeal.
Jolie has also raised awareness of genetic risk factors and the options available to people who do have faulty forms of the so-called ‘cancer genes’.
“We’ve seen a massive increase in people using our Opera system since the Angelina Jolie story broke,” says Jennifer Gorrie, a Macmillan Cancer Support information nurse. “And similarly with our genetics information on the website. At last count it had gone up over 300 per cent, so there are a lot of women who’ve clearly been affected by the story.”
Opera is a section of the charity’s website (opera.macmillan.org.uk) which helps people to find out whether they could possibly have an increased genetic risk of developing breast and/or ovarian cancer. It won’t determine whether you have damaged BRCA1 or BRCA2 genes “but will give them some information they can take to their GP”, says Gorrie.
Jolie’s surgery has reduced her breast cancer risk to below 5 per cent. During the three-month medical process she underwent reconstruction and says the only visible signs that her body has changed are a few small scars. “I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity,” she wrote.
As well as her breast tissue, Jolie has removed the shadow of cancer which may otherwise have plagued her and her family’s future and possibly cut her life short.
SHOULD YOU BE TESTED FOR THE CANCER GENE?
WHEN it comes to unlocking all of the links between genes and cancer, there is still much research to be carried out. However mutations in two genes – BRCA1 and BRCA2 – are known to cause an increased risk of breast and ovarian cancer, as well as some other cancers, including prostate cancer in men. A general screening programme isn’t on offer, though, as it simply isn’t necessary.
Breast cancer is the most common cancer is the UK, affecting one in eight women, but only around 5 to 10 per cent of cases are due to having the gene mutations. “It’s actually very few women who are affected by this faulty gene, so for the majority testing isn’t required,” says Gorrie. “It’s only really appropriate for people with a significant family history.”
This includes having several blood relatives who have been struck by the disease, or some who were young when diagnosed. “If you have a blood relative who was under the age of 40 when they developed breast or ovarian cancer, women who have had cancer in both breasts, or both breast and ovarian cancer, or men with breast cancer, and if there’s a history of both breast and ovarian cancer in the family, these could all be significant,” Gorrie says. “But for most people, if you’ve got an elderly grandmother who’s had cancer or a mother over the age of 60 with breast cancer, and that’s the only family history you have, then your risk of having a hereditary cancer gene is very low.”
WHAT SHOULD YOU DO IF YOU’RE CONCERNED?
THERE’S a wealth of information on the Macmillan Cancer Support website and people can tap their details into the Opera section. Anybody with concerns can also call Macmillan’s free helpline (0808 808 0000). “Our helpline nurses can talk to people about hereditary cancer and cancer in general,” says Gorrie. “If somebody does have concerns, we’d encourage them to speak to their GP about their family history. They will make an assessment and refer them to their local cancer genetics service for genetic counselling, risk assessment and testing if required.”
This will involve being talked through the pros and cons of genetic testing and options available if you are told you have damaged BRCA1 or BRCA2 genes. Not everybody will want to go through with the genetic test, even if they’re assessed as having a high probability of having a mutated gene. If this is the case, you can still ask your GP about having more regular screenings and mammograms.
DOES EVERYONE WITH THE ‘CANCER GENES’ HAVE AN 87 PER CENT RISK?
“That figure varies,” says Gorrie, “depending on which gene fault you have. It varies from between around a 45-90 per cent increased chance of developing breast cancer and, for ovarian cancer, from 40-90 per cent.” Other factors come into play, too. “A woman’s age, whether she’s breastfed and other lifestyle factors like weight, smoking and alcohol intake may come into play,” says Gorrie. These are factors that affect the general population when it comes to cancer risks, too, regardless of whether you have the faulty genes.
IS SURGERY THE ONLY OPTION IF YOU HAVE FAULTY BRCA1 OR BRCA2 GENES?
NO – it’s one option but your genetic counsellor or doctor will discuss others with you. “Having a bilateral mastectomy is a major operation, and it’s a very personal choice,” says Gorrie. The surgery reduces breast cancer risk by around 96 per cent. There is still a slight chance of the disease developing as it’s impossible to remove every trace of breast tissue.
There are numerous things a woman may want to think about before deciding whether to go ahead with surgery – such as her age, whether she’s had children, how old her relatives were when they developed cancer, and whether cancer tends to affect more men than women in their family. “If you are found to have one of the breast cancer genes, the surgery will be available on the NHS,” says Gorrie. “Beforehand, women usually see a surgeon, specialist nurses and a psychologist who can help them explore the option further.”
Ovary removal is also an option, as this also reduces the risk of breast cancer as well as ovarian cancer. Risk reduction advice is another important factor. “There are things women can do to reduce their risk, such as limiting alcohol intake, being a healthy weight and physically active, not smoking, and also limiting the dosage of HRT,” says Gorrie. “HRT is safe but it should be limited. Women can also have more regular screening via mammograms and MRIs. The idea is that this would pick up cancers in early stages where you’ll have greater chance of treating it.”
• For more information visit www.macmillan.org.uk or call Macmillan Cancer Support’s free helpline on 0808 808 0000.