Issues raised on forecasting of DNA breast cancer risk
Family, personal concerns are part of decision making
CHICAGO - Ever since a DNA test had revealed her unusually high chance of developing breast cancer, Deborah Lindner had agonized over whether to have a mastectomy, a procedure that would reduce her risk by 90 percent.
Lindner, 33, had stared at herself in the mirror, imagining the loss of her familiar shape. She had wondered, unable to ask, how the man she had just started dating would feel about breasts that were surgically reconstructed, incapable of feeling his touch or nursing his children.
As they seek to avoid the potentially lethal consequences of a mutant gene, many of them turn to relatives who share its burden.
But parents who have fought cancer typically have no experience with the choices that confront their children, and guilt over being the biological source of the problem can color their advice.
Even as she searched for her own answer in the year after her DNA test, Deborah Lindner, medical resident, found herself navigating her family's strong and divergent opinions on the imperfect options that lay before her.
Her father, who once feared he would lose his wife to cancer, encouraged the surgery. Her sister reminded her that cancer might be cured in a few years if she could wait. Her aunt said she hated to see her niece embrace a course of action akin to "leechings of the Dark Ages." A cousin declined even to take the DNA test.
But it was her mother's blessing that Deborah most eagerly sought.
Joan Lindner, who had passed her defective gene to her daughter, had her own breasts removed after she had been married for 27 years and had raised two daughters.
Now Joan Lindner couldn't shake the fear that her daughter might trade too much in her quest for a cancer-free future. What if taking such a radical step made it harder for Deborah to find someone special and become a mother herself?
The Lindners share a defective copy of a gene known as BRCA1 (for breast cancer gene 1) that raises their risk of developing breast cancer sometime in their lives to between 60 percent and 90 percent. Only 30,000 of more than 250,000 American women estimated to carry a mutation in BRCA1 or a related gene, BRCA2, have so far been tested. But their numbers have doubled in the last two years, and with a sharp increase in genetic testing, are expected to double again in the coming one.
About a third opt for preventive mastectomies that remove the tissue where the breast cancer develops. A majority have their ovaries removed, halving their breast cancer odds while decreasing the risk of highly lethal ovarian cancer, to which they are also prone.
Some take drugs that ward off breast cancer. Others hope that frequent checkups will catch the cancer early, or that they will beat the odds.
Their decisions, which require weighing an inborn risk against other life priorities, are highly individual.
But with DNA forecasts of many other conditions on their way, BRCA carriers offer the first clues for how to reckon with a serious disease that may never arise - and with the family turmoil that nearly always does.