Table 4 Abstracted open comments on subjective experiences of genetic testing in general (Opportunity to this given at the end of the questionnaire)

Age 46, tested at 36, 4 children before testing, gene MLH1

Very afraid of cancer and death, demanded for hysterectomy straight after testing, but was not operated until at age of 45.

Age 37, tested at 27, 1 child before testing and 3 children after testing, gene MLH1

No influence on family planning. Genetic finding has caused other difficulties in life. Encourages her children to have genetic testing.

Age 32, tested at 22, 1 child after testing, gene MLH1

Considers the uterus and ovaries a risk. Plans to have surgery after menopause.

Age 42, tested at 26, 1 child before testing and 2 children after testing, gene MLH6

Genetic finding has caused uncertainty and anxiety. Grateful for surveillance.

Age 52, tested at 35, 2 children before testing and 1 after testing, gene MLH1

First reaction was fear and disgust towards upcoming surveillance procedures. Later grateful for information and her children’s possibility for genetic testing.

Age 58, tested at 42, 1 child before testing, gene MLH1

Grateful and positive thoughts. Considers herself safe and privileged for surveillance.

Age 42, tested at 27, 2 children after testing, gene MLH1

Grateful for supportive professionals. Tells that surveillance appointments were nor provided automatically at regional hospital, had to insist them.

Age 34, tested at 27, 1 child before testing and 1 after testing, gene MLH1

Had depression for 6 months after genetic finding. Other reasons influenced as well. Considers results reported to her in an unfriendly and negative manner. Felt that prophylactic removal of gynecological organs deteriorates self-esteem.

Age 41, tested at 33, 1 child before testing and 3 children after testing, gene MLH1

Grateful for testing and surveillance. Worried for her children.

Age 39, tested at 21, 2 children after testing, gene MLH1

Genetic finding had negative influence on feminine self-image.

Age 30, tested at 23, 2 children after testing, gene MSH2

Was missing peer support, then got it from her own sister after her testing. Grateful for surveillance. Worried for her children.

Age 36, tested at 27, 1 child after testing, gene MLH1

Feels safe and does not have worries. Grateful for surveillance.