Depending on the history of breast cancers in a family (and history of other cancers eg ovarian, prostate, male breast cancers and some ethnic groups), it is possible to make an estimate of an individual woman’s risk of developing breast cancer in her lifetime. It is reassuring however that more than 90% of breast cancers do not run in families. They develop without there being a genetic link to another family member with breast cancer and are known as sporadic cases.
NB: Only 1% (1 in 100 women) are at high risk of developing breast cancer
It is thought that only about 10% of breast cancer cases have some form of genetic link. In families with multiple breast cancer cases (and or cancer of the ovaries) there may be some form of genetic link (a tendency passed on through DNA).
Only some women (20-30%) at high risk of developing breast cancer will carry a breast cancer gene that can be tested for (BRCA1 and BRCA2). There are however thought to be other genes (some very rare indeed) that account for more than 2/3 of genetic linked cancers. Therefore, testing may or may not be appropriate.
A full and detailed family history is essential as a starting point to a full specialist genetics team assessment where appropriate.
There are guidelines which are helpful in reassuring many patients and their GPs. Guidelines also help to identify those women who would benefit from a specialist assessment of their risk (see NICE guidelines pdf leaflet).
The specialist family history clinic and regional specialist genetics team are there to provide help for those women considered to be at an increased and high risk to:
After an individual risk assessment, agreeing a suitable surveillance strategy and full genetics assessment a patient may be found to be at significantly high risk of developing breast cancer to consider having all her breast tissue removed to try to prevent breast cancer. Bilateral mastectomies cannot completely remove the risk of developing breast cancer but it is has been found to reduce the risk by at least 90% in gene carriers(ie from 80-90% lifetime risk to less than 10%). Hartmann et al JNCI 2001;93:1633-7
Bilateral Mastectomies with or without Breast Reconstruction is a tremendously complicated process. It requires an enormous amount of preparation, commitment as well as personal strength and courage. It often takes a long time to be fully ready to proceed. It is essential that every woman considering surgery has the support of a dedicated team of experts including surgeon, specialist nurses, geneticists, clinical psychologists, radiologists, GPs as well as her family and friends.
The surgical team (oncoplastic surgeon or Breast Surgeon & Plastic Surgeon) will discuss the potential benefits and pitfalls of surgery and also the specific reconstruction techniques that are appropriate for her. Discussions will be needed about whether a patient wishes to keep her nipples –nipple preserving mastectomies (carrying a theoretically tiny, but nevertheless increased risk of cancer) or to have nipple sacrificing mastectomies with nipple-areola reconstruction in the future. Understanding a patient's desires and helping her to have realistic expectations of what may or may not be achieved are crucial to successful outcome.
Many patients also find it valuable to discuss surgery and the whole process with a patient who has already undergone surgery. In Cornwall we have a flourishing "Buddy System" of former patients who are more than happy to help women considering surgery.
The superb support offered by the National Hereditary Breast Cancer Helpline (established 1995) is also an invaluable resource for any women with concerns or questions about their 'increased risk' and the best strategy to adopt for the future.