A front-page story in The Star on Saturday made me want to howl at the moon.
The piece, about a 42-year-old woman fighting stage 4 breast cancer, laid out how fortunate she is that a local hospital now offers the treatment that she thought she’d have to go all the way to Houston’s M.D. Anderson Cancer Center to get.
Boy do I hear that: I moved back home to D.C. from Rome for medical care when I had breast cancer, and during my second go-round with that wretched disease, after I figured out that UCLA had pioneered the surgery I needed, I spent a month in my sister’s spare room on the other side of the country, in Los Angeles. So I more than appreciate what a relief it is for Barb Wells’ whole family that her metastatic cancer can be treated right here, at St. Luke’s Koontz Center for Advanced Breast Cancer.
The infuriating part of the article, though, is this: “Barb Wells was just 39 when she learned in July 2014 that she had stage 2 breast cancer. Tests soon determined it was the estrogen-receptor type and that Wells was BRCA1 positive, meaning she had inherited the cancer gene, likely from her dad’s mother, who died of breast cancer in the late 1960s.”
Let me translate for you lucky people who have not been to Cancerland, and may you never go: Probably because no one ever told Barb Wells that her grandmother’s breast cancer meant she should get a simple blood test, available since the ’90s, that would have told her she carried that gene mutation, a mother of two young kids is fighting for her life today.
If you have that mutation, your chance of getting breast cancer is as high as 87 percent. And armed with information, this is cancer you could prevent. It’s taking everything I have not to stud this piece with exclamation points because I am flat-out begging you to hear this: This test can save your life, and yet doctors typically recommend such genetic testing only after a cancer diagnosis, at which point you already know that your risk of cancer is 100 percent.
So why are women and men with a pattern of breast, ovarian, prostate or pancreatic cancer or melanoma in their families not encouraged to get this simple, painless saliva or blood test, which could help them save their own lives?
My friend Lisa Friedman, a Palo Alto, Calif., innovation consultant who grew up in Missouri, is a psychologist by training and someone who connects dots for a living, and she has been trying to get the word out for a while now. By the time she found out that she carries the gene mutation, she already had cancer.
Since then, she has helped me see that if we only started to think about this test in a different way, it could be the best Mother’s Day present ever to all those kids who don’t have to lose their moms too soon.
As Lisa has written — in a beautiful book she has just finished and is now working on getting published — we’re stuck in this fatally throwback mindset of preferring not to know this potentially lifesaving bit of information.
In part, that’s because we’ve been made to fear that the only option, if you found out you did have the mutation, would be to “mutilate” your body with preventive mastectomy.
First, that’s not the only option. You could also have regular ultrasound, MRI screenings and other careful monitoring that could catch the cancer far earlier than routine screening does. Cancer caught early is almost always treatable.
Next, it’s not disfiguring surgery. Lisa says her breasts look better than ever after mastectomy and reconstruction, and points out that if you need a new hip, you don’t say yeah, I’m getting my hip cut off and won’t have one any more; you call it a hip replacement, and that’s what breast reconstruction is, too.
Even in talking to a breast cancer prevention advocate about the importance of genetic testing, what Lisa heard back was, “But only 10 percent of women who get breast cancer carry the gene mutation.” Only? One in seven women will join this cursed club at some point, so one in 10 is a lot of women.
After Angelina Jolie’s prophylactic mastectomy in 2013, there was at least some conversation about testing, but a lot of pushback, too, and worry that she’d inspire too much worry and a rash of unnecessary surgeries. But since surgery like that cuts the risk of breast cancer almost to zero, shouldn’t we be a lot more worried about all those women who don’t even know they might need it?
Another concern is cost: The test can run between $475 and $4,000 and is usually covered by insurance. But compared to the cost of fighting cancer, what a bargain.
Mother’s Day has come and gone, but here’s a belated and potentially important gift from me and my friend Lisa: If you have those types of cancer in your family, on either side, through mom or dad, just get this done now, for the sake of everyone who loves you. Men, too; you can consider this your early Father’s Day present.