Elisha Neave passed away yesterday. I wrote about her and her sisters recently here.
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.
I recently purchased Veronica Neave’s Pieces of Me, a documentary companion film to her autobiography about her family’s experiences with BRCA2. Unfortunately, the DVD is coded for a different region and won’t work on my American DVD player (digression: DVD regions are a total scam). I found part of the film on YouTube, so you can watch about a segment in which the BRCA+ sisters grapple with how to manage their risk. At one point in the film, Veronica Neave says “knowledge is a gift–or so I thought” and notes how difficult it is to figure out to what to do with the knowledge of being BRCA+ when the options for managing high risk are so “barbaric.” I couldn’t agree more.
I am really disappointed that I can’t watched the entire movie, because Veronica Neave and her sisters Chrissy Keepence and Elisha Neave have such an amazing rapport and they instantly won me over (incidentally, Chrissy is wicked stylish). But in my quest to find the film online, I fell down a YouTube rabbit hole. It turns out that the Neave sisters often appear in the Australian media to discuss BRCA+ issues. You can find a really great interview with them here and here that was filmed some time after Angelina Jolie announced her mastectomy.
The interview reveals that Neave’s mother Claudette is fighting a recurrence of breast cancer, her youngest sister Elisha (who in the film put off prophylactic surgery because she felt that she had more time) was diagnosed with ovarian cancer at 33, and her father has also recently passed away. This is what it’s like to be in a cancer family: there is no reprieve.
The account of Elisha’s experiences with ovarian cancer is particularly gut wrenching (follow up on her here and here). It seems noteworthy that in the two BRCA1/2 documentaries that have been made–Pieces of Me and Joanna Rudnick’s In the Family–women in their 30s delayed prophylactic surgery and then faced cancer diagnoses a few years latter (in Elisha’s case ovarian cancer and in Rudnick’s case breast cancer). Mastectomy and oopherectomy are obviously very difficult, very personal decisions and not everyone chooses to go those routes. However, these films suggest that if you have chosen surgical risk reduction, then you should act sooner rather than later at the same time that they show that actually following through with surgery can be easier said than done.
Adding to the complexity of this issue is the fact that prophylactic mastectomy is considered “elective surgery” in Australia and not covered by the healthcare system there. This situation puts an appalling financial burden on BRCA+ Australian women to pay for their own risk-reducing surgeries if they can. In worst case scenarios, it makes risk-reducing surgery unavailable to those who can’t afford it.
UPDATE: I just discovered that you can rent the entire film on Amazon. Woot!