I have been thinking about Elisha a lot lately. I did not know her personally, but her story struck a cord with me. I’ve been sitting in doctors’ offices waiting to find out if I have ovarian cancer, and I’ve been thinking about Elisha all the way down there in Australia struggling to survive a rare and aggressive form of it that she was diagnosed with at just 33 years old. Every time I’ve told a friend that I’m being screened for ovarian cancer, I’ve told them about Elisha.
Because it’s not supposed to be like this. Even BRCA+ women, as unlucky as we are, are supposed to have more time than Elisha got. In the United States, the standard of care for BRCA1 women is oopherectomy by 35 years of age. Women with a BRCA2 mutation, like the Neave sisters, are supposed to have even more time before removing their ovaries and facing surgical menopause. BRCA2 mutations have a lower risk of ovarian cancer, and it typically strikes BRCA2 women at a later age than BRCA1 women. In fact, I’ve heard doctors comment that they’ve never even seen a case of BRCA2 ovarian cancer before the age of 50 in their practices.
So Elisha Neave delayed oopherectomy in her early 30s because she wanted to have more children. It was an emotional decision, but it was also a rational one based on solid medical evidence. She ought to have been safe; she wasn’t. BRCA+ women are never truly safe from hereditary cancers and almost everyone in the HBOC community knows at least one BRCA2 woman who has had ovarian cancer before the age of 35.
I am struck, once again, by the great injustice of all things BRCA. We should not have to watch our loved ones die of these cancers. We should have better choices for managing the risks of these cancers. We should be able to prevent these cancers. We should have more effective ways of detecting these cancers. We should have better ways of treating and curing these cancers. Twenty years after the discovery of BRCA2, we don’t have any of these things.
Every time I hear about the death of a BRCA+ woman from breast or ovarian cancer, I am forced to relearn these lessons. That I am not safe from my own body. That I cannot protect my loved ones from the genes we share. That life with a BRCA mutation is hatefully unfair. That all the things that I viscerally feel “should be” or “ought to be” are not, in fact, assured.