Prophylactic Surgery Option Forces Difficult Choices

By Mary R. Anderlik
Health Law & Policy Institute

Women have been undergoing prophylactic mastectomy for decades, for indications including family history of breast cancer, multiple previous breast biopsies, unreliable results from physical exams, and cancerphobia. Some commentators have questioned this practice given the trend toward breast-conserving treatment for breast cancer itself. However, most recent entries in the medical literature recognize prophylactic surgery as a reasonable choice for certain groups. New tests for genetic mutations that increase susceptibility to cancer help to ensure that only those individuals who are truly at high risk undergo the procedure.

A recent study found that for 425 women assigned to a high-risk group based on family history, prophylactic mastectomy reduced the incidence of breast cancer by 90-94% and death from breast cancer by 81-94%. These findings were based on a retrospective review of the records of 639 women who had bilateral prophylactic mastectomies at the Mayo Clinic between 1960 and 1993. Specialists in decision analysis estimate that women in the highest risk group gain between 2.8 and 5.3 years of life by undergoing prophylactic mastectomy at age 30. (Prophylactic surgery may fail in part because it leaves residual tissue in the breast area, and because breast tissue is also found in other parts of the body. Recent advances in breast reconstruction are leading more women to choose total mastectomy, resulting in more complete removal of breast tissue.)

At this time, there is little solid evidence concerning psychological adjustment after surgery. One recent study looked at the experience of 370 women who had undergone bilateral prophylactic mastectomy and volunteered for a registry. Twenty-one (5%) expressed regrets about the procedure. Regrets were more common among women whose physicians initiated discussion (19/255) than among women who themselves initiated discussion (2/108).

According to an industry spokesman, insurers’ willingness to cover prophylactic surgery varies considerably. In the only coverage case to be decided by a state supreme court, Katskee v. Blue Cross/Blue Shield of Nebraska, 245 Neb. 808, 515 N.W.2d 645 (Neb. 1994), the outcome hinged on the definition of "illness." In 1990, Sindie Katskee was diagnosed with breast-ovarian carcinoma syndrome on the basis of family history, personal health history, and a physical exam. The consultant recommended a hysterectomy and oophorectomy, a recommendation in which Katskee’s gynecologist concurred. The insurer, Blue Cross/Blue Shield, initially indicated that it might pay for the surgery, but later decided against coverage. Katskee went ahead with the procedures, and then filed suit for breach of contract. The state district court granted the insurer’s motion for summary judgment.

For purposes of the appeal to the Nebraska Supreme Court, Blue Cross did not contest the appropriateness of the surgery for the condition, but rather argued that Katskee’s condition did not constitute an illness and therefore failed a threshold test for coverage under the policy. The court found that Katskee’s condition was a deviation from what is considered a normal, healthy physical state or structure arising in part from genetic makeup, resulting in substantial risk of cancer, and hence an illness. Since "not every condition which itself constitutes a predisposition to another illness is necessarily an illness," the court suggests that risk must be assessed in each case. This raises some difficult questions, for example, whether courts should look at lifetime risk or current risk. While risk increases with age, the benefits of prophylactic procedures in terms of gains in life expectancy decrease with age.

Some commentators have worried that the court’s broad definition of disease for coverage purposes might create problems if carried over to pre-existing condition clauses in insurance contracts. These clauses typically limit coverage for treatment of a condition existing, or known to exist, prior to the time of enrollment. Insurers could argue that a cancer diagnosed after enrollment relates back to a predisposing genetic defect, and therefore treatment for the cancer is not covered. The court in Katskee seems to thwart this strategy by suggesting that the disease that exists by reason of the genetic defect-cancer risk bundle (the breast-ovarian carcinoma syndrome) is distinct from the various forms of cancer the defect is known to foster.