As epidemiologists, we spend our days seeking new ways to prevent breast and ovarian cancer. Every day, we shuffle tables, sort graphs and review, hoping to find ways to bring the numbers down. These are the tools of our trade.
So, it hit close to home when one of our own family members was diagnosed with advanced ovarian cancer. She is one of 3,000 people in Canada diagnosed with ovarian cancer every year, but what makes her case remarkable is that it was entirely preventable.
She was first diagnosed with breast cancer at age 58. No one told her about genetic testing then. Twenty years later, she was diagnosed with ovarian cancer. A genetic test revealed she had been carrying a BRCA2 mutation.
For three decades, we and others have been studying genes that, when mutated, dramatically increase someone’s risk of developing ovarian (and other) cancers. The risk of ovarian cancer in those who carry mutations is 20 per cent or more. When a woman is found to have a BRCA1 or BRCA2 mutation, we recommend preventive surgery. It is a one-day procedure, and the patient goes home the same afternoon.
If our family member had had the test when she was initially treated for breast cancer, she would have likely had both her ovaries and fallopian tubes removed. In 2014, we showed that this operation reduced the risk of ovarian cancer by 80 per cent in women with a mutation. This finding has been replicated around the world. This year, we showed a 68 per cent reduction in all deaths among high-risk women after preventive ovary and fallopian tube removal. The facts in a soon to be published paper show we should be removing the ovaries of five women who carry a mutation to prevent one ovarian cancer.
Ovarian cancer is deadly, and when an opportunity to prevent its arising, we should take it.
There has been a lot of time and effort (and money) dedicated to finding a blood test that can identify ovarian cancer at an early, curable stage, but the approach hasn’t had an impact yet and most ovarian cancers are still diagnosed at an advanced stage. Scientists are divided on whether it is worthwhile to screen for ovarian cancer. This is not the case for preventive surgery.
All guidelines support preventive removal of the ovaries and fallopian tubes (oophorectomy) for BRCA2 mutation carriers at or prior to age 45. This is one of the few interventions to prevent cancer where we have a clear consensus. Ovarian cancer is deadly, and when an opportunity to prevent its arising, we should take it.
Very simply, this means that if we know someone has inherited a BRCA1 or BRCA gene mutation, we have an opportunity to prevent a fatal disease by simply removing her ovaries. So, why don’t all women get genetic testing? We think it is a matter of the current stringent genetic testing criteria, as well as patient and doctor awareness.
We don’t believe most women are reluctant to get a genetic test result and for most women, the cost is not a barrier (though it may be for some). Instead, we believe that not enough women know about BRCA1 and BRCA2, the connection between breast and ovarian cancer, and that a diagnosis of breast or ovarian cancer should prompt a genetic test.
The Screen Project, an initiative of Women’s College Hospital in Toronto, is an online genetic testing platform that makes genetic testing available to everyone in Canada over the age of 18. No barriers. No criteria.
About 20 per cent of the ovarian cancer cases in Canada diagnosed each year are in people who carry a mutation and are most likely preventable. About one half of these will prove fatal. This means we have an opportunity to prevent 300 deaths from ovarian cancer every year.
Genetic testing can become more accessible. The evidence is clear. Why are we waiting?
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I was diagnosed with breast cancer in 1987, at the age of 34. A month after my mastectomy, I became pregnant, had an abortion and tubal ligation. In 2017, I was diagnosed with stage 2B ovarian cancer. My thanks to you both and to all researchers who have made removal of fallopian tubes – the place most ovarian cancer starts – the standard of practice for all women undergoing the procedure.
Cancer once is bad enough – a second preventable and lethal cancer makes me grateful for your work on behalf of my 2 daughters and 3 granddaughters. Although genetic testing has not (to date) identified any known mutations, I know that being diagnosed with breats cancer at and early age and a 2nd hormone-related cancer 35+ years later is not just bad luck or bad choices – the bad genes I carry, will someday be identified – fingerscrossed in time to save my beloved family from hearing “I’m sorry. But you have cancer.” God speed to you both.