research
As Time Goes By: The Long-Term Psychological Impact of either Regular Surveillance or
Prophylactic Mastectomy in Women at Risk for Hereditary Breast Cancer
- Publication date
- 13 June 2012
- Publisher
- 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 H