People in the North of the Netherlands included in research into families with an increased risk of breast or ovarian cancer

People from families with a high incidence of breast or ovarian cancer often have to make far-reaching decisions about preventive surgery. Their decisions are based on sound advice about their personal risk of developing cancer. However, up until now it has been unclear why some of these women have a higher risk than others. A lot more information is needed, not only about hereditary factors such as mutations in certain genes, but also about lifestyle. The Hebon study, a large-scale survey of families with an increased risk of breast or ovarian cancer, has been set up to look into this question. In the North of the Netherlands, some 4,000 women (and 900 men) who visited the genetics department of the UMCG in recent years will soon be asked to take part. In total, 30,000 women and 6,000 men from throughout the Netherlands will be approached.

Since the mid-1990s, members of families with a high incidence of breast and ovarian cancer can opt for DNA testing. However, mutations in the BRCA1 and BRCA2 genes are only found in a small number of families. Researcher Matti Rookus from NKI/AvL [Netherlands Cancer Institute/Antoni van Leeuwenhoek Hospital]: ‘We hope that the Hebon study will enhance our knowledge about hereditary causes, so that in future we can keep members of BRCA1/2 families and other high-risk families properly informed.’

Widely varying risks

The risk of breast or ovarian cancer varies greatly, even for people with a mutation in the BRCA1 or BRCA2 gene. It is still not clear why some ‘mutation carriers’ are at higher risk than others. Other genes would appear to be involved, but so is lifestyle. The risk of people from younger generations developing cancer is increasing; people are affected by the disease at a younger age. This may be because some of the risk factors involved in developing cancer are now more prevalent in the general population. Women are having children later in life, more people are obese and fewer take regular exercise. These risk factors may also play a part in developing hereditary breast cancer. Researcher Jan Oosterwijk from the UMCG: ‘More knowledge is urgently needed so that we can advise mutation carriers and women from families without the mutation about the risk of cancer, and explain their prevention options. Far-reaching decisions about whether to undergo preventive surgery on ovaries or breasts, and the age at which this should be considered, depend on this information.’

Understanding the implications and the treatment

The Hebon study also aims to enhance knowledge of the implications of preventive surgery, if women choose to proceed. This involves investigating problems resulting from the procedure itself (such as the onset of menopause), as well as longer-term health problems.

Another part of the study will focus on the treatment of breast and ovarian cancer in this specific target group. The researchers want to find out whether women from these families should receive the same treatment as women who are not afflicted by a hereditary form of cancer.

Around 5,000 people in our region

This month, some 4,000 women (and 900 men) from families with an increased risk (36,000 in the whole of the Netherlands) will be asked by the University Medical Center Groningen to take part in the Hebon study. Hebon stands for the Netherlands Research into Hereditary Breast and Ovarian Cancer. Those taking part will be asked to fill in an online questionnaire about lifestyle factors. Their answers will boost current knowledge about the risks of cancer, thereby improving the advice given to the families involved.

The Programme Committee for Heredity of the Netherlands Breast Cancer Association is supporting the Hebon study for the reasons outlined above. The study will be conducted by a multidisciplinary team of clinicians and researchers from all the University Medical Centres and the Antoni van Leeuwenhoek Hospital, and funded by the Netherlands Organisation for Health Research and Development (ZonMw), The Dutch Cancer Society (KWF kankerbestrijding) and the Pink Ribbon Foundation.

Note for the press

For more information, please contact the UMCG press office on +31 (0)50 361 22 00. More information on the Hebon study in general is available at www.hebon.nl.