Dorothy Hamill pushes for breast cancer tests, awareness

Dorothy Hamill was dubbed America’s sweetheart when she won Olympic gold in figure skating in 1976, but for the past few years she has been so worn out she couldn’t make it onto a rink.

Breast cancer surgery, radiation and six years of medication designed to reduce a relapse left her achy, fuzzy-headed and exhausted. “I felt like a 90 year-old woman,” says Hamill, 59.

Research suggested she should keep taking the medicines for at least another three years.

Instead, she got her tumor genetically analyzed. The test suggested that her cancer wasn’t particularly aggressive, so she decided to stop the medications and assumed she had already gotten the most out of them.

Now, she’s a paid spokeswoman for the San Francisco-based company bioTheranostics Inc., which makes one of the tests, and part of an educational campaign, BeWisER+ About Breast Cancer, which is designed to encourage others to get it.

Roughly 200,000 American women are diagnosed every year with the same kind of hormone-receptor-positive breast cancer Hamill had.

To keep the cancer from coming back, most have been getting five years of follow-up treatment with either tamoxifen —  for those who haven't yet entered menopause — or aromatase inhibitors. Several studies have found that 10 years of tamoxifen is better at reducing recurrence than five, leading doctors to extend the therapy.

For those like Hamill who have challenging side effects from the drugs, it makes sense to consider whether they get enough benefit to justify 10 years of those side effects.

But do genetic tests like bioTheranostics’ really help?

The answer isn’t yet clear, says Gary Lyman, a breast cancer oncologist and health care economist at the Fred Hutchinson Cancer Research Center and the Seattle Cancer Care Alliance in Washington.

“To use it to select patients and say based on that test you should or shouldn’t get 10 years of tamoxifen — we’re just not there yet,” says Lyman, who co-leads the breast cancer guideline oversight committee for the American Society of Clinical Oncology.

No one has compared survival rates of two groups of women: one that stopped the medication at the suggestion of the test and another that continued. There’s also no evidence to support choosing among the four to five similar genetic tests, Lyman says.

Also, current recommendations call for a decade of tamoxifen but  only five years of aromatase inhibitors, Lyman says, so not all women with hormone-positive breast cancer would benefit from genetic testing.

The bioTheranostics test, called Breast Cancer Index, examines the patient’s tumor — removed during her initial surgery — to look for a genetic signature suggesting the cancer is unlikely to become aggressive. The company assumes that women with less aggressive cancers won’t need the full 10 years of medication.

But there are also ways to gauge aggressiveness without the test, including tumor size and whether lymph nodes indicated cancer, Lyman says.

Those clinical clues can sometimes be wrong, though, says Elyse Lower, director of the University of Cincinnati’s Cancer Institute Breast Cancer Program and a paid consultant to bioTheranostics.

“There’s some cases where the cancer is tiny … but sometimes there’s biology within the cancer that can make it more likely to come back after five years,” she says, explaining why a genetic test would be helpful. “We have surprises that we’ll be overtreating, and places where we might guess incorrectly and undertreat.”

Vinay Prasad, a hematologist/oncologist and medical ethicist at the Oregon Health and Sciences University, says he’s always skeptical about genetic tests — many of which promise more than they deliver, and which go through far less review by the Food and Drug Administration than medications or devices.

Prasad says he’s concerned that following the advice driven by such genetic tests hasn’t been proven safer on balance than continuing to take the drugs.

“For all we know, God forbid, maybe (Hamill) should have been taking it. That’s the open question,” he says.

The cost of genetic testing — $3,000 to $5,000 — is usually covered by insurance or Medicare. Generic tamoxifen costs about $100 a month, so over the course of five years, the test could provide savings if the drugs are stopped.

Lyman says he hopes the BeWisER+ About Breast Cancer public information campaign encourages more women with hormone-positive breast cancer to talk with their doctors about how many years they should be on the drugs.

Hamill says that she’s glad the test was available and that she and her doctor were able to make a decision that was right for her. Her energy is back now, other symptoms have abated, and she has been strapping on her skates again — though she insists she’s not in performance shape.

“It’s nice to be able to go around and be in the cool air, which is what I love.”