Many men carrying breast cancer gene are left without support

A new doctoral dissertation shows that many men carrying hereditary breast cancer gene feel that necessary support is not available to them. Despite an increased cancer risk, there is no consistent preventive cancer screening organised for these men.

Mutations of the BRCA1 and BRCA2 gene increase the risk of developing prostate cancer and breast cancer in men. Mutations increase the risk of breast and ovarian cancer in women, and the risk of cancer is greater for women than men. When a BRCA 1/2 predisposition mutation has been detected in a family, the family members in risk are offered genetic counselling and genetic testing.

Breast cancer in men is fairly rare. In 2015, thirty men were diagnosed with breast cancer in Finland.

The doctoral dissertation of Master of Health Science Outi Kajula looked into the genetic counselling received by men with the hereditary breast cancer mutation (BRCA 1/2) and men’s experiences on being carriers of the gene.

Kajula researched the genetic counselling received by these men with a questionnaire that was taken by 35 men. In addition, she interviewed 31 men about their experiences related to being gene carriers. The subjects were aged 29–82 and some of them had already been diagnosed with cancer.

Impact on relationship and starting a family

The research showed that having the knowledge of being a gene carrier may have a comprehensive impact on men’s life. 

“Many reported strong feelings due to the knowledge of being a carrier, such as anxiety and disappointment, and these feelings may be fairly long-lasting”, says Kajula. For some subjects, the information impacted their relationships between them and their spouses, starting a family and even having children.

Kajula finds it especially sad that the need for psychosocial support for the men participating in the research had not been looked into, and they had not been provided sufficient support or further advice after being identified as carriers.

“Many would have hoped for advice and support when the time came to start a family or when telling children about the BRCA 1/2 predisposition found in the family.”

According to Kajula, psychosocial support should be arranged for different situations in life based on individual needs. “In addition, men need to know that support and advice is available if they are diagnosed with cancer”, she remarks.

No preventive cancer screening

In Finland, there is no preventive screening of male hereditary breast cancer mutation carriers. “Regular screenings are provided for women with the breast cancer gene, but there is no corresponding system for men”, says Kajula.

The men who participated in the study had been advised to go to PSA tests in the future to prevent prostate cancer, but some of the subjects had no opportunity to be screened, or seeking out screenings had proved to be difficult. 

Also, the men had not been instructed to perform regular breast examinations. Some of the men had searched information on the Internet, but many were hoping for concrete instructions and reliable information.

In her doctoral dissertation, Kajula developed a model of genetic counselling for male hereditary breast cancer mutation carriers. The model is already ready to use.

Master of Health Science Outi Kajula will be defending her thesis on Friday, March 16.

Link to the doctoral thesis

 

Last updated: 12.3.2018