One Friday each month, a group of women check in at the fourth-floor reception desk of the Seattle Cancer Care Alliance. They travel from as near as Edmonds and as far as Billings, Mont., to consult with a team of breast- and ovarian-cancer specialists who will review medical records, evaluate mammograms and discuss options for follow-up care.
At first glance, the clinic visitors appear similar to any other Alliance patient who seeks a consultation for one of these cancers. Yet a quick look at their health status reveals a difference: Most of these women don't have breast or ovarian cancer. If Dr. Elizabeth Swisher's team achieves its objective, none of them ever will.
Swisher, an assistant professor of gynecologic oncology at the University of Washington, is the new director of the Alliance's Breast and Ovarian Cancer Prevention Program, a multidisciplinary clinic for women at high risk for developing either or both cancers.
The Alliance clinic is one of only a handful around the country providing a full menu of services for this population of women, Swisher said.
"There are many places where women can have their risk of developing cancer evaluated," she said. "But after providing women with a risk assessment, the question becomes, what do you do with that information?"
In a field this new, the answers continue to evolve, Swisher said. Although options to minimize cancer risk-which range from vigilant surveillance to prophylactic surgery to remove the breasts or ovaries-may differ for each patient, the goal is to provide every woman who comes for a consult with a cancer-prevention plan that she can take back to her primary-care physician.
"We work with a woman's primary provider to implement the plan," Swisher said. "It's unreasonable to expect primary-care providers to keep up with the latest in cancer-prevention research."
The clinic was founded in 1998 under the guidance of Dr. Julie Gralow, associate professor of medical oncology at the UW. Each year, the clinic sees about 60 women who have strong family histories of the diseases or medical conditions that may increase their cancer risk, such as a prior diagnosis of breast cancer or atypical breast lesions.
Unlike women in the general population, who have about a 10 percent chance of developing breast cancer and 1 percent to 2 percent chance of developing ovarian cancer, the women who visit the Alliance program can be at much greater risk. For individuals who have inherited cancer-predisposing forms of certain genes, the chance of developing breast cancer may be as high as 85 percent and for ovarian cancer, the risk is up to 40 percent.
Not even the most experienced physician can guarantee an individual will never develop cancer. But the specialists who staff the Alliance clinic believe that by arming a woman with a realistic cancer-risk assessment and a personalized prescription for preventive care, they can increase her odds of remaining disease-free or of having her cancer, should it ever occur, diagnosed at an early and more treatable stage.
Women at risk
Designing an individualized plan for a woman begins with a thorough medical evaluation. Although each woman's situation is unique, visitors to the clinic tend to fall into one or more of three high-risk categories.
About 80 percent of those who visit the clinic have a genetic predisposition to one or both cancers and often have multiple relatives on one side of their families who have been diagnosed with breast cancer or ovarian cancer. In most cases, this inherited-cancer syndrome is attributable to mutations in either of two genes known as BRCA1 and BRCA2. Women can undergo genetic tests to determine whether they carry a mutation in one of these genes.
Women with an altered BRCA1 or BRCA2 gene are three to seven times more likely to develop breast cancer and about 10 to 20 times more likely to develop ovarian cancer than women without alterations in those genes.
Whitney Neufeld-Kaiser, the program's manager, said that her initial contact with patients often involves determining whether genetic testing is an appropriate option. Patients who want more information about genetic testing are referred to the UW Medical Genetics Department, where they will meet with a team of medical geneticists and genetic counselors who are trained to evaluate and counsel patients about hereditary-cancer syndromes and interpret genetic-test results.
Neufeld-Kaiser, also a genetic counselor, said that not all women with a strong family history wish to be tested.
"For some women, learning with some certainty that they have a 2 percent chance of cancer or a 50 percent chance of cancer based on testing is a relief," she said. "Others may not wish to know or may need more time to decide if testing feels right for them."
Some women who visit the clinic have a family history of breast and/or ovarian cancer but do not have BRCA1 and BRCA2 mutations. Scientists have not yet discovered additional genes linked to a higher risk of these diseases, so additional genetic testing is unavailable for this group of women. A third high-risk category consists of those who have had prior diagnoses of atypical lesions or localized cancers of the breast.
Each woman undergoes individual consultations with team members. In addition to Swisher and Neufeld-Kaiser, the clinic staff includes Robin Bennett, a UW genetic counselor; Dr. Roger Moe, a UW breast surgeon; Dr. Melanie Palomares, a UW medical oncologist; and Dr. Matt Mealiffe, a UW internist and fellow in medical genetics.
Services provided during a clinic visit include a re-evaluation of a patient's recent mammograms and instruction on how to perform breast self-examination.
After the individual consultations, the medical team reconvenes as a group with the patient and initiates an interactive discussion of cancer-prevention options. For example, because mammograms alone work poorly for women with very dense breast tissue, these women might be encouraged to also undergo screening with ultrasound or magnetic resonance (MR). Other women might be appropriate candidates for the drug tamoxifen, which can lower the risk of breast cancer, or for prophylactic (preventive) surgery to remove the breasts or ovaries. The team may urge women to pursue their preventive care in conjunction with one of many research studies-some led by Fred Hutchinson and UW scientists-aimed at reducing breast and ovarian cancer in high-risk patients.
Recommendations may need modification depending on a woman's personal priorities. For example, a woman who plans to have children would not be ready to consider removal of her ovaries.
In addition, a woman's cancer risk may be secondary to other medical conditions, Neufeld-Kaiser said.
"We recently met with a woman who was a perfect candidate for tamoxifen, but she also has diabetes and heart disease, and a strong family history of the same. These conditions may impact the risks of the drug," she said. "There can be multiple risks to your health, and the cancer risk may not be the primary one."
Swisher said that delivering personalized care in a rapidly changing field keeps the clinic staff's jobs interesting and challenging.
"There is no formula that fits any two women," she said. "The more we do this, the less straightforward it is."