Prostate cancer? What’s to think about?

Gov. Mark Dayton is reportedly going to spend the weekend evaluating his options for treatment of his prostate cancer. The possibilities are surgery or radiation, MPR News reporter Brian Bakst writes.

What’s to decide?

The answer to that doesn’t usually make it into stories about governors, so let’s check on WBUR’s (Boston) outstanding series on cancer which, coincidentally, is today following Ron Dombrowski, who’s a 65-year-old. He’s five years younger than Dayton. Unlike Dayton, there’s a possibility the cancer has spread to his lymph nodes. Doctors aren’t sure yet.

But like Dayton, Dombrowski has at his disposal, doctors from one of the finest hospitals in the world — in his case, the Dana Farber Cancer Center — and his oncologist knows what questions he has about which course of treatment to pursue. They’re the questions every man has.

(Dr. Neil) Martin describes the pros and cons of two treatment options: surgery to remove the prostate, or radiation to kill cancer cells in the gland. Martin compares surgery to radiation in the top three areas of concern for most men with prostate cancer: Which treatment gives me the best chance of survival? Will I be able to have an erection after either or both types of treatment? And, will I be able to control when I pee?

Dombrowski is leaning toward surgery to remove the prostate because “I want to know what the problem is, and how to fix it,” he says.

WBUR’s report acknowledges a reality that Dombrowski isn’t told, however. Some doctors are better at this than others. Some are better, for example, at preserving bladder control.

The problem for most men is it’s impossible to find out who those doctors are.

As new, often more expensive treatments come online, patients and others who pay for their health care are joining Dombrowski in asking: Where can patients find the best value in health care?

Experts who study cancer care don’t know when patients will be able to answer that question. The quest to define quality or value in cancer care, and show patients who delivers the best care, is underway. Researchers started with the most common types of cancer: lung, prostate, breast and colorectal. But it’s very early in the process. There’s no agreement on what data hospitals should collect or requirement that they do so. In fact, there’s still tension about whether sharing an individual physician’s patient survival rate and other quality data would improve or harm care.

To illustrate the progress and challenges of measuring quality in cancer care, we’ll focus on what’s happening with prostate cancer. The walnut-sized gland, lodged precariously below a man’s bladder in front of the rectum, hosts nerves that help control urine and also blood flow during an erection.

Doctors say treatment almost always leaves some damage. So which doctors or hospitals have the best record for minimizing damage? Before prostate cancer experts can answer that question, they have to figure out which results matter most to patients.

In the absence of real data, it’s hard to answer the questions men have.

So an organization — The International Consortium for Health Outcomes Measurement (ICHOM) — is developing standard ways to measure the quality of care for particular conditions. Prostate cancer is one of the first it completed to assess likely outcomes.

It’s a start, a series of measures to begin to create a database of outcomes.

But it’s not a big help to people facing decisions right now.

The data that’s being collected isn’t available to patients, and some hospitals aren’t all that thrilled with the idea that it should be, WBUR reports.

Hospitals may be worried they won’t look good, that they’ll have lower survival or higher complication rates than their competitors. But there are practical and technical challenges too. Some hospitals have years of data from their own patient surveys that they might have to toss out if they switch to a new standard. Or they may have invested in software that doesn’t fit the new data requirements.

The National Comprehensive Cancer Network (NCCN), which includes the 27 major cancer centers in the U.S., has not endorsed any quality measures.

“The need is great and this is difficult to do,” says Dr. James Mohler, a urologist who chairs the NCCN’s prostate cancer guidelines panel. “Hopefully we’re going to arrive at some type of consensus about how to do this to help our patients that are afflicted by cancer.”

Paul Drouilhet, who had radiation treatment for his prostate cancer, tells the station that having more information available to a patient can make the decision on treatment more complicated, not less.

What if one physician had a much lower rate of cancer recurrence after 10 years, but a much higher rate of patients left incontinent after surgery. Some doctors say that might be a common dilemma for patients in the future because doctors who take out extra tissue during surgery are more likely to get stray cancer cells, but also more likely to damage urinary function.

“Would you trade incontinence for a longer life?” Drouilhet asks. “What if it was a 5 percent higher incontinence rate and a 80 percent probability of nonrecurrence?”

The survival rates for prostate cancer are great, but reporting that fact can also convey that the decisions to be made aren’t all that significant. That’s wrong.

“It’s a matter of time,” Drouilhet says. “I have a fatal disease, it’s going to kill me, and the issue is to keep it at bay as long as I can.”