Novakovic at NorthShore uses a prostate cancer aid that asks patients to rate their preference for trade-offs they may face, such as a one-year loss in life expectancy with no incontinence compared with an irregular bladder for six months but no change in life span. “I believe patients should know what their options are,” Novakovic said. “They should not come in to a urologist's office after being diagnosed with prostate cancer and the urologist tells them they have cancer and what day next week do they want to have their prostate removed. In the year 2013, that's inappropriate.”
For Cohen, active surveillance seemed like an attractive option even though he had one measure among the surveillance criteria that was slightly elevated. Active surveillance involved more rigorous monitoring than the watchful waiting recommended for older men. He routinely scheduled tests, exams and ultrasounds to determine if his low-risk tumor began aggressively growing, which could threaten his life.
“I decided that the quality of my life was as important as the length of my life,” he said about his initial decision to reject surgery or radiation, which came with “intimidating” potential side effects such as incontinence and impotence.
But he continued to explore treatment options, including a visit to a proton beam therapy center, where he was encouraged to seek a second reading of his biopsy. He did, and it detected more aggressive cancer, which prompted Cohen to reconsider his options. In mid-October, he underwent brachytherapy, a less radical form of radiation therapy.
Yet not every well-informed patient opts for the less radical approach to treatment, especially when it comes to cancer. “When you put the name cancer on something, all of a sudden people's treatment preferences become more radical,” said George Loewenstein, an economics and psychology professor at Carnegie Mellon University who studies the role of emotion in healthcare decisions.
Rosalie Weener asked her primary-care physician about a double mastectomy even before a pathology report confirmed bilateral breast cancer in May 2012. She raised the question again after a diagnosis that her cancer was rare and fast-growing.
Weener said she did not want the double mastectomy, but was more concerned with ridding herself of the malignant cells, even hand-delivering records from one hospital to another to speed surgery. “To me, it's like, 'get this out of me,'” she said. “That was most important to me at that point.”
After reassurances from her oncologists that a mastectomy wasn't necessary, she opted for less radical surgery. That was followed by post-operative chemotherapy.
But then she was confronted with another choice—whether to undergo radiation, which could kill lingering cancer cells. It, too, came with unwanted side effects. It might damage her heart and lungs. Moreover, repeat radiation treatments sometimes damage cells in ways that lead to new cancers many years down the road.