Long-term breast cancer survivors: confidentiality, disclosure, effects on work and insurance.

Unlabelled: As more women are diagnosed with breast cancer, more will survive the illness from a few years to a lifetime. This study sought to determine the experience of Canadian breast cancer survivors with respect to the impact of cancer on confidentiality, work and insurance.

Method: Women who had survived breast cancer without recurrence for at least 2 years completed a mail survey about the effect of their illness on confidentiality, disclosure, work and insurance.

Results: 378 (75.6%) women breast cancer survivors responded to the survey. Their mean age was 61.0+/-10.9 years, and 67.6% had been recurrence free for more than 5 years. The majority of women rated hospital staff, family doctors, family, friends, and support groups at the highest possible level of confidentiality. Over 70% of survivors disclosed their diagnosis to friends, children, siblings, and partners, while over 50% disclosed to work colleagues and supervisors. However, over 40% felt cancer had altered their priorities or progress at work, and 5% were afraid to change jobs in case they became ill again. There was a lack of knowledge about insurance but, of the types of insurance identified, life insurance (17.9%), extended health insurance (7.7%), and private disability insurance (4.4%) were reported to have been refused or offered only with higher premiums as a result of a past diagnosis of breast cancer.

Discussion: A substantial minority of women perceived that cancer had substantially affected their personal and work lives. Although most felt their illness confidentiality was well protected and they disclosed freely to family, friends, and work, over 40% of women survivors reported that cancer had affected their work in various ways, and nearly 20% identified insurance problems. It appears that disclosure sometimes results in negative work and insurance experiences.

Conclusions: Health professionals and cancer survivors should engage in education about the potential positive and negative effects of disclosure, and advocacy against cancer-based work and insurance discrimination.