Prophylactic Mastectomy Registry (Hansard, 27 January 1999)

I beg to move,

That leave be given to bring in a Bill to establish a United Kingdom registry of women who have undergone prophylactic mastectomy surgery. Prophylactic mastectomy covers two types of operation whereby healthy breasts are removed in an attempt to prevent the development of breast cancer. Breast cancer is an emotive issue and any proposals associated with its diagnosis and treatment need careful consideration if they are to assist women and not give rise to greater fears. I am confident that the small measure that I am proposing is responsible and in the public good.

My interest is both personal and scientific. Like so many people—MPs are no exception—I have breast cancer in my family and I receive regular screening in the NHS. I also have an interest in genetics, having spent the early years of my professional life studying and working on that subject at Imperial college, albeit with micro-organisms, not people.

Breast cancer is the most common form of cancer in women, with one in 12 women developing the disease and more than 34,000 new cases diagnosed in the UK each year.

Awareness of breast cancer is high thanks to the numerous campaigns mounted by women's organisations and the cancer charities. Furthermore, recent statistics show that there has been an improvement in breast cancer survival rates in all European countries, including the United Kingdom, as a result of improvements in treatment. However, the more we women take charge of our own health, and the better informed we become, the more difficult it is for the medical profession to give advice.

There are no absolute predictions to be made about the development of this disease. All that women can expect is to receive advice based on the most comprehensive data that can be gathered. Most women are aware that a family history of breast cancer is likely to be significant, and there is a growing awareness that it is possible to develop the disease because of an inherited genetic abnormality.

Only 5 to 10 per cent. of breast cancers are thought to be the result of genetic mutations, yet worried women with a family history form a disproportionately large number of those referred to specialist breast clinics. Most will not actually have an increased risk because their close relative will not be carrying a mutant gene, but there is no simple or sure way of knowing. Some of the genes responsible have been identified; many others remain to be discovered.

The women who are most likely to be at risk of carrying an abnormal gene often have either a mother or sister diagnosed with breast cancer in their early 30s or 40s, plus several other members of the family similarly affected. If a young woman with breast cancer is found to have a genetic mutation, it is reasonable to test whether close relatives have inherited the risk, of which there is a 50:50 chance.

In those circumstances, half the women tested will be reassured that they do not have the susceptibility of their mother or sister, but the other half will be told that they 345 have a genetic mutation which predisposes them to a breast cancer risk over a lifetime of 56 per cent. What are those women to do? What are the many women with strong family histories but no genetic screening to do?

Some will feel able to live with the risk, accept close medical surveillance or enter into a trial preventive drug programme such as that carried out with tamoxifen, but, increasingly, women in high-risk categories are undertaking the most radical preventive action of all—they are having both healthy breasts surgically removed.

I have no doubt that, on the basis of the available evidence, those women—we believe that they number between 200 and 500 a year in the United Kingdom—are making an entirely rational decision. As one of them told columnist Jenni Murray in The Express:

I can live without my breasts but I don't want to die because of them. The stark truth is that no one can be certain that those drastic measures, which carry with them risk and trauma, will guarantee a lifetime free of breast cancer. It is for that reason that I am introducing a Bill to establish a UK-wide register of all women who undergo preventive mastectomy. The register would record who had the operations, where and for what reason. Over time, such a register would enable consultants to give women a precise statistical account of the effectiveness of those preventive operations.

The proposal for such a registry comes not originally from me, but from one of the UK's most eminent breast cancer consultants, Professor Ian Fentiman, of Guy's hospital. It is his view that nothing less than a national register will enable us to gain a full picture of the value of those operations.

The only available data come from a retrospective study of 639 women who underwent bilateral prophylactic mastectomy in the United States at the Mayo clinic between 1960 and 1993. Professor Fentiman believes that that study is too small to give dependable statistics that would allow surgeons to compare the efficacy of the different forms of operation involved. Furthermore, and more significantly, that survey was conducted on women who were treated before genetic testing was a reality.

346 I see no alternative to a UK register of those operations, and a compulsory register at that. Such compulsory notification does not break new ground. We already have a national cancer registry into which details of cancer diagnoses are entered. Pathologists, who are already familiar with such record keeping, would simply be required to record details of the preventive operations in a similar way. Once a registry of all prophylactic mastectomies had been set up and linked to a register of all breast cancer patients, we would have the means of properly assessing preventive mastectomy.

In addition to my sponsors in the House, to whom I am extremely grateful, my proposal has the support of Imperial Cancer Research, the UK Breast Cancer Coalition and the Royal College of Nursing.

Women who are seeking genetic testing and having to make the decision whether or not to undergo mastectomy are frightened and uncertain. We owe it to those women and to their families to use every means at our disposal to make that decision as informed as possible. The very least that surgeons should be able to offer them is advice based on proper statistics and proper research. A national registry of prophylactic mastectomies would be a first and vital step towards achieving that and aiding all of us—our scientists, our surgeons and women ourselves—in defeating this pernicious disease.

Question put and agreed to.

Bill ordered to be brought in by Ms Joan Ruddock, Ms Judith Church, Mr. Frank Doran, Dr. Ian Gibson, Dr. Evan Harris, Miss Julie Kirkbride, Dr. Ashok Kumar, Ms Jackie Lawrence, Mrs. Alice Mahon, Laura Moffatt, Ms Julie Morgan and Ms Dan Taylor.