In a post published this week in The New York Times' Motherlode special section, TV producer-turned-freelance journalist Darlena Cunha shared her thoughts on the difficulty of dealing with the knowledge that she has a very high chance of developing breast or ovarian cancer, knowledge imparted to her as a result of BRCA1 mutation testing.
The 32-year-old Cunha underwent BRCA1 mutation testing after her physician looked at her family history: every single woman in her family has tested positive for the mutation, and several of them eventually developed the disease in their late 30s and 40s.
It turned out that Cunha also has the mutation, and is one of the less than 2 percent of the general population affected by it. With her genetic makeup, she writes, she was given an 87 percent chance of developing breast cancer and a 70 percent chance of developing ovarian cancer.
Cunha goes on to discuss the guilt she feels about likely passing on the same mutation to her six-year-old twin daughters; the ethical dilemma she faces in deciding whether or not to have more kids; and the difficulty she faces in choosing whether or not to receive a pre-emptive breast removal and hysterectomy — issues that most women who are presented with the likelihood that their genes confer a significant risk for developing cancer must grapple with.
Cunha's post draws attention to the sort of limbo that results when a patient is made aware of genetic mutations that confer a high risk for developing cancer or any other disease, for that matter, underscoring the need for genetic counselors.
"Knowing doesn't mean we can do anything about it, which is the hardest part," Cunha writes. "All I can do is go for mammograms, MRIs, and tumor marker tests twice a year, as the doctors check to see whether I have cancer yet. So far, so good. But, someday, the scans will come back positive."
"That’s the limbo in which I float," she adds. "I have to act now or pay later, and it's anyone's guess as to how many nows I have left."