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!