IF YOUR mother, grandmother, sisters and female cousins had all died of hereditary breast cancer and you had the option of having your breasts removed, would you do it?
One in nine women in the UK develop breast cancer. While the majority of cases are blamed on an increase in weight, lack of exercise, increased use of some forms of hormone replacement therapy (HRT), having fewer children later and not breastfe
eding, 2% are due to the high-risk faulty genes BRCA1 and BRCA2.
Advances in genetic testing mean that women with a significant family history, or who are shown by blood tests to carry the faulty gene, can choose to have preventive mastectomies, since they have up to an 85% chance of developing the disease.
Increasing numbers of women are doing just that, and only last month the first baby born free of the genes was grown from an embryo that had been screened to ensure it did not contain BRCA1. Born at University College London hospital, the girl will grow up to avoid developing the genetic form of breast or ovarian cancer, after her parents saw all of the father's female relatives suffer from the disease.
While embryo screening may be the way ahead, women nowadays who know or suspect they have faulty genes can have surgery on the NHS or privately, where a package – which includes counselling, bilateral mastectomies, reconstruction with saline implants and accommodation – would cost approximately £8,500.
Carolyn Rogers, clinical nurse specialist with Breast Cancer Care, says: "It's a very small number who undergo risk-reducing mastectomy and it's only for those who have a significantly higher risk of developing cancer according to family history or who have tested positive for the gene mutations.
"They would be entitled to surgery on the NHS and the decision is taken over a long period in consultation with a clinical team. Many women choose not to have it, despite being carriers, and opt for more frequent screening instead. There are other genes associated with breast cancer, too, and even if you test positive, you may not go on to develop breast cancer."
Gareth Evans, professor of clinical genetics at St Mary's Hospital, Manchester, who – along with fellow researchers at the Genesis Prevention Centre – has proposed more frequent screening for women at increased risk of breast cancer, says: "Having this surgery is not a snap decision, but something women have thought very seriously about. They have counselling from geneticists and psychologists, and meet surgeons and breast-care nurses before proceeding."
Helen Proud, 44, from Glen Quharity, near Kirriemuir, decided to have the operation after such a period of careful consideration. "My sister was first diagnosed with breast cancer two years ago, and we later discovered it to be terminal," she says. "It was thought she'd had it since her early 30s, which is young, so that set alarm bells ringing. My father had both bowel and prostate cancer and his mother had bilateral breast cancer."
But Proud hit a stumbling block when her sister indicated that for personal reasons she didn't want to provide the vital index blood test needed for meaningful genetic testing.
Wendy Watson, 53, the first woman in the UK to have preventive breast removal 16 years ago after losing nine close relatives to breast cancer, says: "You can only have the gene test if you have a blood sample from a living relative who has had breast or a related cancer.
"I never thought of it as being brave. Afterwards, I just had an enormous overriding sense of relief and two scars. I didn't have reconstruction as I could never decide what size to be! They sent me home with three different sizes of prosthesis, but they kept disappearing – my daughter Becky kept nicking them."
Becky Measures, now 26, has no need of falsies these days, as she also had her breasts removed two years ago and opted for reconstruction to give her a curvaceous figure, as well as a life free from worrying about her genetic legacy.
Watson's experience led her to set up the Hereditary Breast Cancer Helpline service, to which Proud had turned when she was seeking information about her situation.
In spite of the uncertainty over whether she had the mutant gene, Proud decided to take the step of having her breasts removed in November 2007.
"It was a decision based on commonsense and respect for my good health," she says. "I wanted to take control and avoid cancer in the first place, rather than having to react to it, if and when it were to strike. I don't know for sure whether I carry a mutant gene but can now live my life free of fear of breast cancer."
Following extensive psycho-oncological assessment, Proud underwent skin-sparing bilateral preventive mastectomy using keyhole surgery, where all of the breast tissue is removed and the inside of the skin scraped to try to remove all of the cells. Empty dual chambered balloons are then inserted behind the chest muscle wall and, over the next six months, filled with saline through valves to stretch muscle and skin gradually. Finally, the tissue expanders are replaced with cohesive gel silicone implants. While Proud opted for prostheses, other women have their shape restored using tissue from the abdomen or back.
"The implants are unlikely to leak and are more anatomically correct these days," she says. "You have to look very carefully to see the scars. My surgeon gave himself ten out of ten for size, shape and position, and told me they look real. I told him: 'Thank you, I feel real!'"
Proud has discovered that others may not share her pragmatic approach and find the idea of removing healthy breasts alarming. "After the surgery, one of my brothers e-mailed that as I'd chosen to have my healthy breasts sliced off, it was clearly my head, not my chest, that needed examining.
"Some people just can't see why you would want rid of healthy tissue, and women should be prepared for the negative impact it may have on those around them.
"I'm glad I can stop being afraid and would urge other women in my situation to stay strong and put their own health before any hurdles and negative reactions."
For many women, preventive mastectomy is a step too far and alternatives include regular mammography, drugs that block oestrogen production and drug trials.
"Every woman with a faulty gene is offered surgery but they can choose screening instead," says Evans. "A third opt for mastectomy in the first year after testing, with a further 20% choosing surgery up to eight years after."
Since the vast majority of breast cancers are not of genetic origin, women can make a real difference to their health simply by making sensible lifestyle choices, exercising and keeping their weight down. Dr Michelle Harvie, research dietician in cancer prevention at the Genesis Prevention Centre, says weight is a major factor in breast cancer and the unit has produced a diet and exercise book aimed at reducing the risk. "If you put on three stone in weight from 18 to the menopause, you're doubling your chances of getting breast cancer," she says. "If 2% develop it because of the faulty genes, the other 98% is down to hormones, diet and lifestyle, so reducing weight and taking exercise may reduce the risk for all women.
"There are other things we can do too, such as having children at an early age and avoiding alcohol – one 250ml glass of wine every day increases your risk by 10%, and for women in the high-risk group, I suspect it's more. Breast cancer is not inevitable. There is a lot we can do to reduce our risk."
For Proud too, prevention rather than cure is crucial and a year on from her surgery, she is fundraising for Breast Cancer Prevention Appeal. "It would be great if people might help with a donation or even raise funds for the appeal," she says. "Women need to realise what a profound difference they can make to their chances of getting breast cancer through ordinary lifestyle choices."
What to look out forHow prevalent is breast cancer in the UK?
One in eight women will experience some form of breast cancer during their lifetime. The statistics are very similar across the Western world
One in three of all people diagnosed with cancer suffer from breast cancer
More women are being successfully treated and surviving breast cancer, due to early detection, prompt action and improved treatments
One woman is diagnosed with breast cancer every 15 minutes. As awareness grows, more women are discovering breast cancer than ever before
46,000 women are diagnosed with breast cancer every year
Breast cancer is the most common cancer
Each year in the UK more than 12,300 women and 70 men die from breast cancer
SymptomsMany breast cancers are detected by mammography, and treatments include radiography, chemotherapy and hormonal therapies, such as tamoxifen, progestogens and aromatase inhibitors. Symptoms include:
breast lumps (although most of these are benign)
change in size or shape of the breast
dimpling of breast skin
nipple inversion
change in the nipple
swelling or lump in the armpit
(very rarely) a blood-stained discharge from the nipple or rash around the nipple
Combating cancerThe Genesis Prevention Centre breast cancer ten commandments
1. Watch your weight and calorie intake, especially in puberty. Make sure you exercise, not just to keep weight down but for hormonal issues. If you are overweight, losing those extra pounds can help reduce your risk by as much as 40%.
2. Be more active. Aim to include three to four hours of exercise each week.
3. Limit your alcohol intake – each drink you have on a daily basis can increase your risk by 10%. Therefore, someone who has five drinks a day can increase their risk by up to 50%.
4. Limit your intake of saturated (animal) and trans fats by cutting down on fatty meats, high-fat dairy products, cakes, biscuits, pastry, crisps and many margarines. Not all fat is bad for us – those in oily fish and avocado, as well as rapeseed, walnut and olive oils are part of a healthy anti-cancer diet.
5. Eat more wholegrain and less refined (white) starchy foods. Wholegrains can help control levels of cancer-promoting hormones in the body and will boost your intake of cancer-beating nutrients such as selenium and vitamin E.
6. Include different-coloured fruit and vegetables to ensure you take in a full range of anti-cancer nutrients; aim for at least five portions per day.
7. Include in your diet low-fat dairy products such as yoghurt, milk and cottage cheese, which are rich in calcium and often vitamin D. These help protect us from cancer.
8. Be aware of taking combined HRT – which contains oestrogen and progesterone – for more than two years. Ten years on, it can double your risk (although this increased risk does disappear within five to ten years of stopping HRT).
9. Be breast aware. The majority of breast cancer outside screening programmes is detected by women themselves.
10.Attend breast screenings if you are eligible. The NHS Breast Screening Programme provides free screenings every three years for all women in the UK aged 50 and over. Screenings can take place if you are aged between 40 to 49 years and have a moderate family history of breast cancer.
Edinburgh MoonwalkWALK the Walk takes teams of women and men all over the world to power walk their way to raising money and awareness for breast cancer care and cancer causes.
For something close to home, why not take part in the original and only power-walking marathon, the Edinburgh MoonWalk? Last year's event raised more than £2.7m and saw 12,000 woman and brave men pounding the streets of the capital in decorated bras. This year's MoonWalk, the Highland Swing, takes place on the night of June 20 and hopes to top that figure with 15,000 walkers.
Now is the time to take that first step to being fitter, healthier and making a difference to the lives of many. To enter, visit www.walkthewalk.org.
ContactsTo make a donation to the Breast Cancer Prevention Appeal, visit www.genesisuk.org.
The Genesis Breast Cancer Prevention Diet, by Rodale Books, is priced £10.99. Royalties from the book go to the Genesis Prevention Centre.
The Hereditary Breast Cancer Helpline service is available on 01629 813000 and at www.breastcancergenetics.co.uk.
For more details on Breast Cancer Care, visit www.breastcancercare.org.uk
