Choosing a Path

This year, nearly 280,000 women will be diagnosed with breast cancer in the United States. They will be told they have a life-threatening illness; then we doctors will make them sick with treatments in order to make them better. The diagnosis triggers a rapid escalation of difficult treatment decisions informed by increasingly complex clinical information. And as more patients undergo genetic testing, even relatives may face decisions about assessing and managing future cancer risk.

The Cancer Surveillance and Outcomes Research Team, or CanSORT, centered at the University of Michigan studies cancer treatment communication, decision making and quality. We are working across disciplines with colleagues in academics, industry, clinical practices and government to improve treatment decision making and communication for patients and their doctors in this increasingly complicated flow of information.

The road through treatment is arduous, loaded with decisions and input from specialists that few patients have met before. And, while the current combination of surgery, endocrine therapy, radiation and adjuvant chemotherapy has markedly improved survival, it exacts a price from patients and their families. Surgery is deforming; endocrine and radiation therapies have short- and longer-term side effects; and adjuvant chemotherapy is grueling with the potential for longer-term physical side effects and social disruptions at work and home.

Upon a diagnosis of cancer, the immediate reaction from many patients is to aggressively attack the cancer — for instance, with a double mastectomy — but this can lead to side effects and complications with no overall benefit in disease-free survival.

The road through treatment is loaded with decisions and input from specialists that few patients have met before. And, while the current combination of [treatments] has markedly improved survival, it exacts a price from patients and their families.

In two-thirds of all women diagnosed with breast cancer this year, the cancer will be detected at an early or favorable stage. One-quarter of this group will have non-invasive breast cancer (ductal carcinoma in-situ, or DCIS) and half will have invasive disease but with favorable characteristics of the tumor. Treatment is highly effective in these women. Survival from breast cancer after treatment is virtually 100 percent for women with DCIS and greater than 90 percent for those with invasive disease caught early.

Precision medicine is changing decision-making by giving doctors evaluative tools to better target individual treatment. Medical oncologists are using a combination of genomic tests performed on the tumor to pinpoint which patients will or won't benefit from adjuvant chemotherapy. These advances have markedly reduced dangling uncertainty for these patients, the stress of treatment decision-making and improved health outcomes.

Genetic germline testing is another new area of precision medicine that is rapidly evolving in breast cancer. These tests identify mutations in specific genes that may predispose patients to future breast or ovarian cancer. Over the last decade, BRCA gene testing, the most well-known type of genetic testing for breast cancer, has revealed strong risks of breast and ovarian cancers in individuals and their relatives. This has prompted women with detected BRCA mutations to consider intensive cancer screening or even preventive surgery to reduce that risk.

More information about cancer risk can be a good thing, of course, but for many patients the test results may provoke a new area of uncertainty. And unlike the breast cancer tumor tests, germline genetic testing results include cancer risk in relatives, further complicating ethical implications. These situations reinforce the glaring need to study the impact of precision medicine on treatment communication and decision-making. We must also develop better strategies and tools to tailor communication and decision-making processes — one patient at a time.

CanSORT leads these efforts. Yet we are humble as we recognize that so much work remains ahead of us, as we drive population and intervention research to create a healthier and safer future for patients diagnosed with cancer.