June 2017—As PCORI-funded studies produce results of interest to patients and those who care for them, we are updating the stories of those projects. You can read the original story here.
In 2007, retired engineer Ralph Conwill was diagnosed with prostate cancer. The news came as a shock. “I told my urologist that I just wanted the cancer out,” Conwill says. “But he explained that I had treatment choices involving different outcomes to consider.”
Now a PCORI-funded study at Vanderbilt University, for which Conwill was a patient partner, can help men make a more informed decision about prostate cancer treatments by providing evidence about the effects of those treatments. Among men with prostate cancer at relatively low risk of spreading to other parts of the body, surgery caused more long-term sexual dysfunction and urinary incontinence than radiation, while men who elected radiation experienced slightly more bowel symptoms. Fewer men on active surveillance reported these side effects after three years, the team reported in JAMA.
As one of the approximately 3 million American men with prostate cancer, Conwill had to decide what treatment to seek. His cancer was confined to the prostate, but because it was at intermediate risk of spreading, he was advised to seek immediate treatment. That meant he could choose between surgery and radiation. Both treatments have proven effective in keeping nearly all men with similar cancers alive for at least five years. After a two-hour-long consultation with a radiation oncologist, Conwill remained convinced that surgery was best for him.
Many men with localized prostate cancer like Conwill’s face the same choice, and those with low-risk cancer can also consider no immediate treatment. Instead, they receive active surveillance, which includes repeated testing. Though research has shown that the three options give men the same high likelihood of surviving for 10 years, little information has been available about how the treatment options affect men’s quality of life.
“Our study’s take-home message is patients who can safely do active surveillance should consider that very carefully,” says the study’s principal investigator, David Penson, MD, MPH.
Our study’s take-home message is patients who can safely do active surveillance should consider that very carefully.
David Penson, MD, MPH
Real-World Decisions
The study looked at the health records of 2,550 men diagnosed in 2011 or 2012 with localized prostate cancer who lived in one of five places: Utah, New Jersey, Louisiana, Atlanta and rural Georgia, and the Los Angeles area.
The men chose among contemporary treatments being offered around the country, such as laparoscopic (also called minimally invasive) surgery and advanced radiation therapy. “The study reflects real-world practice,” Penson says. “That allowed us to generate information that is relevant and germane to men who are diagnosed in 2017.”
Ralph Conwill, patient partner and prostate cancer survivor (Courtesy of Daniel Dubois, Vanderbilt University)
Over half of the men in the study had disease at intermediate or high risk of spreading to other parts of the body. They needed to choose either surgery or radiation. The remaining 45 percent, with cancer at low risk of spreading, also considered active surveillance. The study followed all of the men for three years.
Men who had had surgery to remove their prostates were more likely to report sexual dysfunction and urinary incontinence than men who had radiation or underwent active surveillance. Radiation caused slightly more bowel dysfunction than surgery and was more likely than active surveillance to decrease sexual function.
What Patients Care About
Surveillance wasn’t an option for Conwill because of his cancer’s risk of spreading. He had his prostate removed with robotic-assisted minimally invasive surgery. “I lost my sexual function, which I knew might happen,” he says. “That loss has been extremely difficult for my wife and me. But we would choose surgery again, for the same reason: it met our preference of minimizing the risk of cancer recurrence.”
Since his surgery, Conwill has become heavily involved in several cancer-related projects at Vanderbilt, including partnering with Penson on his PCORI-funded study and talking through options with men newly diagnosed with prostate cancer. “People want to talk to someone who had gone through the decision-making process,” he says. “I help them frame the questions to ask their doctor to make sure they’re getting what they really want, to help them improve their outcomes.”
I had treatment choices involving different outcomes to consider.
Ralph Conwill
Conwill and other patients assisted Penson’s study by helping to write the funding application, determine what outcomes to study, look to future steps, and perform other activities. “Ralph’s biggest line is always, ‘But do the patients care about that?’”
Conwill and Penson are continuing to work on the problem. With funding from the Agency for Healthcare Research and Quality, the team will collect information about how the same men are doing five years after their diagnosis. They are interested in developing an online tool to bring this updated information to patients who can use it to make decisions based on what they value the most.
“I keep asking the questions: will patients understand it? Will doctors have time to communicate it in words patients can understand?” Conwill says. “We need to get the data out there to help patients make a more informed decision.”
Posted: June 16, 2017
