Cancer is very common: about one in two people born after 1960 in the UK will be diagnosed with some form of cancer during their lifetime (Cancer Research UK 2016). Many people have a relative who has had some sort of cancer, but only breast cancer, and more rarely bowel cancer, have any known links with ovarian cancer. Some ovarian cancers are caused by an inherited faulty gene (called BRCA1 or BRCA2), which can also cause breast cancer. Research has shown that 20% of women with high-grade serous ovarian cancer (HGSOC) carry a BRCA gene mutation* Even fewer are associated with a gene (called HNPCC) that causes bowel cancer and cancer of the endometrium (the lining of the womb).
Several women we talked to knew that one or more of their relatives had had either breast or ovarian cancer, although others pointed out that it was sometimes hard to know if relatives had had gynaecological cancers, since it had not been openly discussed in the past.
Some doctors had mentioned the possibility of a genetic link and some women were convinced that it was the cause of their cancer. Women tended to discuss with family members the possibility of a genetic cause of their cancer because of the implications for close female relatives. Relatives’ responses were important influences on women’s decisions as to whether or not to have a genetic test. Some found that their relatives (especially younger people) did not want to discuss genetic testing.
She discussed a genetic cause with her family and decided against being tested for a faulty gene.
Most women with ovarian cancer who have a significant family history of ovarian and or breast cancer will have access to genetic testing in the NHS. Several women we talked to had been tested for the faulty genes and were awaiting the results. One woman could not get a test on the NHS and had it done privately.
Some women were being screened for breast cancer as a result of their genetic consultations, and some of their relatives were also being screened for breast and ovarian cancer. One woman’s sister was found to have an early form of breast cancer as a result of being screened, and then other female relatives were also screened. Another felt guilty that her daughters needed screening for breast and ovarian cancer, after already being screened for bowel cancer because of a family history.
Her sister was screened and pre-cancerous breast disease was found, prompting other relatives to…
Felt guilty that her daughters now have to be screened for ovarian cancer as well as colorectal…
Two women we talked to had been found to have one of the faulty genes, so their sisters and children were being tested. Both felt that finding out they had a faulty gene would benefit future family members. One woman’s son refused a genetic test, although his sister and brother were tested and found clear. The other woman’s sisters were being tested for the genes and screened for cancer. The offer of an operation to remove her breasts in order to reduce her risk of developing breast cancer had upset her.
Some of her children were tested for the faulty genes and she feels this benefits the family.
Being offered an operation to remove her breasts to reduce her risk of developing breast cancer…
A couple of women worried about the implications of having a genetic test. One thought that knowing they had the gene might be frightening. Another thought having it in their medical records might cause difficulties in the future, for example with insurance.
Talks about her family history and her concerns about being tested for a faulty gene.
Women suggested some potential benefits for family members who chose to have a genetic test. For example the person would be likely to identify the disease at an earlier, more treatable stage because they could watch their health more closely and be screened earlier in life. One woman explained that her daughter might choose to have her own children in her 20’s rather than later. Also women who learnt they were at high risk could choose to have their breast or ovaries removed before any disease developed, perhaps once they completed their family. A woman who had kept her ovaries after hysterectomy said she would advise her daughter against doing that.
*J Clin Oncol 33, 2015 (suppl; abstr e16532)