In 1983, it was still so rare — and even taboo — to talk about breast cancer in public that my stylish, image-conscious maternal grandmother wanted most people, even her own granddaughters, to think that she was dying at age 58 of lung cancer.
Considering that she smoked three packs of cigarettes a day — Tareytons and Virginia Slims, the cigarettes with the sexy slogans — that wasn't so out of the realm of possibility. And by the short time from diagnosis to death, after we'd been sitting in a darkened room for days listening to her raspy breaths, the breast cancer had so eaten away her lungs and everything else that it didn't even matter.
But 25 years later, it would matter to me.
See, because I didn't know that my grandmother's primary cancer had been located in her breast, when I found my own lump in 2005, insurance wouldn't pay for genetic testing right away. "You're so young!' Kaiser Permanente said. "You have no family history!' And so I wouldn't find out until well after I'd already undergone the recommended lumpectomy, chemotherapy and radiation.
When the cancer came back seven years later — as it so often does when you have not only the BRCA1 but also the BRCA2 gene mutations, as I do — I'd been radiated beyond the ability to have implants. Radiated tissue, you see, typically rejects implanted materials. My only choice, then, would be to have more invasive surgeries and reconstructions. Ultimately I decided that activities like mountain biking and river rafting were more important to me.
As hard as it is not to have breasts anymore, I do know how lucky I am. I'm alive, and I have health insurance. However, I wish I'd been given more choices at the time, choices that could have been made with more and better information.
But now to see headlines blaring that someone as high-profile as Angelina Jolie is not only openly talking about having breast cancer, but also gene mutations and prophylactic mastectomy and the many options — immediate reconstruction and sparing skin and nipples — that means we've finally reached a point where we can start having the conversations about genetic testing before crucial decisions are made.
And, of course, I was also lucky that genetic testing was even covered during any part of the process. For many women, it's not. The full test costs $3,000, an expensive undertaking, and that's after we've gotten past the mammogram, the ultrasound, the biopsies.
The Affordable Care Act made mammograms accessible to a larger part of the population after Aug. 1, 2012, but according to the American Cancer Society, health plans that were in place prior to that date still vary wildly in their coverage nationwide. (According to the ACS, Colorado's coverage, by the way, stipulates a "baseline for ages 35-39, every 2 years for 40s, each year 50+, or physician recommendation.')
A study released just a few weeks ago found that, for unknown reasons, women of color experience treatment delays related to breast cancer treatment, and poor women and women without private insurance have lower five-year survival rates.
But how can women have choices if they don't have a way to pay for them?
We've come a long way, baby, but we're not there yet.