As Time Goes By: The Long-Term Psychological Impact of either Regular Surveillance or Prophylactic Mastectomy in Women at Risk for Hereditary Breast Cancer

Breast cancer is the most frequently diagnosed cancer and the leading cause of cancer death in women worldwide. In the Netherlands, approximately 13000 new breast cancer cases are diagnosed annually, mostly occurring in women older than 50 years. In total 12-13% (one in eight) of the women in the Netherlands will be diagnosed with breast cancer during lifetime, and population screening for breast cancer therefore is being offered to women as of 50 years of age. While the population risk of ovarian cancer is 1.5% in the Netherlands, population screening is not offered. It is estimated that 5-10% of all cancer cases are due to a genetic predisposition. One of the first recognised entities was the clustering of breast and/or ovarian cancer in families. A strong family history of breast (and/or ovarian) cancer in combination with family members affected at a young age (below 50 years of age) may be suggestive of a cancer susceptibility gene in the family. As of the beginning of the nineteen nineties it became possible for women from families with clustering of breast (and/or ovarian) cancer cases to opt for genetic counselling and testing, and subsequently to receive a personal life time risk estimation. Depending on the risk estimation, decisions have to be made for either regular surveillance or prophylactic surgery. Both options are associated with pros and cons regarding on the one hand anxiety that cancer might develop or be detected (at an advanced stage) during surveillance versus on the other hand irreversible consequences after preventive surgery of either breasts and/or ovaries, potentially affecting physical and psychological functioning. As of the beginning of the availability of genetic testing, it became clear that more data on the (dis)advantages of the different strategies was needed. More knowledge about the psychosocial consequences of adhering to regular surveillance as well as prophylactic mastectomy and/or salpingo-ovariectomy was essential, in order to adequately inform and support women considering these options. In 1999, two studies were initiated at the Erasmus University Medical Centre-Daniel den Hoed Cancer Centre, Rotterdam, evaluating the short-term psychological adjustment of women either adhering to regular breast cancer surveillance or opting for prophylactic surgery of the breasts and/or ovaries/fallopian tubes (MRISC-B study and PREVOM-B study, respectively) encompassing a time period of 12 months (see Figure 1). Later on, it became clear that data on the long term also were needed, and therefore, a long-term follow-up study was initiated aiming to explore long-term psychological adjustment in both cohorts of women and to identify risk factors of maladjustment through time.

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