The persistent mythology of urology: urinary symptoms and most prostate cancers
By Howard Wolinsky
Journalism is called history in a hurry.
I have been part of this enterprise as a medical reporter for more than 50 years as well as a journalism lecturer at Northwestern University’s storied Medill School of Journalism for almost a decade. So I do have some opinions as a rare career journalist and also as a very low-risk prostate cancer patient on active surveillance for almost 13 years.
In the rush to make daily--or more frequent deadlines these days—reporters can lose continuity. Each day, they produce a product seemingly in a vacuum that doesn’t acknowledge the previous day’s work.
That’s nothing new. The internet news cycles just intensifies the issue.
It’s like the 1993 hit movie, “Groundhog’s Day,” in which a cynical TV weatherman (Bill Murray) is covering the annual Groundhog Day event in Punxsutawney, Pennsylvania. He becomes trapped in a time loop, starting each day fresh, forcing him to relive February 2nd repeatedly while other people in his world have no memory of the previous day.
Murray’s character eventually learns his lessons and wins the girl from reliving each day. I don’t think we journos usually do that.
This cycle must be confusing to readers who try to connect the dots between stories since there often are contradictions, especially between medical stories.
I have found a Groundhog’s Day time loop for prostate cancer and urinary symptoms. I just wrote about this for Undark.org, an online science magazine published by the Massachusetts Institute of Technology.
My story focuses on whether lower urinary tract symptoms (LUTS)—slow urinary flow, hard-to-start flows, frequent urination, etc.— are “common” in prostate cancer.
LUTS is not common in prostate cancer. The evidence and the experience of urologists show the opposite is true. If you have LUTS, odds are you’re experiencing the symptoms of an enlarged prostate, another common condition in older men.
Dr. Scott Eggener, of UChicago Medicine, estimates based on his practice that only 5% of patients diagnosed with prostate cancer experience LUTS. Dr. Kevin Ginsburg, of Wayne State University in Detroit, says he frequently has to explain to his patients that LUTS are linked with enlarged prostates, not usually prostate cancer.
The exception is patients who have large tumors associated with advanced, aggressive cancers that can interfere with the urinary flow.
The connection between prostate cancer and urinary symptoms seems logical. The prostate gland is situated near the urinary organs. It is below the bladder and surrounds the urethra (the tube that empties urine from the bladder). But anatomic geography doesn’t mean much in how the prostate works.
The mythology of LUTS and prostate cancer continues on websites from otherwise responsible health organizations, such as the National Cancer Institute, Cancer.net, and the Centers for Disease Control and Prevention, major hospitals and news organizations. I think there is a compulsion to list symptoms when describing a disease online.
Urology Prof. Vincent Gnanapragasam and Cambridge colleagues just published an article in BMC Medicine pointing out that national guidelines and public health campaigns continue to promote the misperception that urinary symptoms are a major indicator of prostate cancer. The researchers argue that not only is this unhelpful, but it may even deter men from coming forward for early testing and detection of a potentially treatable cancer before it heads south.
The confusion spreads in the media.
A radiologist specializing in prostate imaging in a “peer-reviewed” article in consumer-oriented website VeryWell Health wrote: “Urination issues are the most common symptoms of the disease.” Buzzer. Incorrect answer. (Verywell Health did not respond to requests for comment.)
By chance, I ran across an interesting example of medical reporting amnesia on this topic in the Express, a “middle-market newspaper” published in London.
(In Britain, a middle-market newspaper caters to readers who like entertainment as well as the coverage of important news events. Middle-market status is the halfway point of a three-level continuum of journalistic seriousness; upper-market or "quality" newspapers generally cover hard news, and down-market newspapers favor sensationalist stories.)
Express health reporter Fiona Callingham is a serious journalist.
In August, she reported on Gnanapragasam’s paper. Here’s the headline:
She cited Gnanapragasam,: “When most people think of the symptoms of prostate cancer, they think of problems with peeing or needing to pee more frequently, particularly during the night.”
She noted that the recent study – the UK PROTECT trial – “went as far as to say that a lack of urinary symptoms may in fact be an indicator of a higher likelihood of cancer.”
Callingham wrote that a previous study found that 86 percent of the public associated prostate cancer with symptoms, but only one percent were aware that it could be asymptomatic.
“We urgently need to recognise that the information currently given to the public risks giving men a false sense of security if they don’t have any urinary symptoms,” Gnanapragasam said. He urges men to be screened for prostate cancer even if they have zero symptoms.
About 100 days after her story on the Cambridge review, Callingham wrote another story about prostate cancer symptoms.
In this story, a Birmingham urologist with top credentials makes the case that urinary symptoms are linked to prostate cancer. Here’s the headline:
Callingham wrote: “As many people are aware, the early symptoms that something is wrong with the prostate often involve toilet habits.” (Emphasis added.)
Consultant urologist at Spire Parkway Hospital in Birmingham, Alan Doherty, told The Express: “The main early signs of prostate cancer all revolve around urinating.
“You may find it difficult to urinate, need to urinate more often (often during the night), have a weak flow of urine and feel as if your bladder isn't completely empty even after you've urinated.
“However, it is important to note that the signs of prostate cancer are also shared by many other, less-serious conditions of the prostate.
“For example, benign prostate enlargement, common in older men, can cause similar symptoms.”
(Is it feeling like Groundhog’s Day yet?)
Gnanapragasam wouldn’t comment on the new article in The Express, but he stands by his statements quoted in the August article ands his paper. He said he is planning a public education program to make patients aware that prostate cancer is virtually never linked with LUTS with the exception of a few advanced cases.
I reached out to Doherty for comment to try to sort this out but didn’t hear back.
I also wrote an email to Callingham requesting comment. I don’t intend to single her out. The same sort of contradictions are rife online. This is a case study.
“Part of my role is to report the latest information on conditions including expert comments as well as studies,” she said in an email, noting that she had covered the Cambridge paper. “The symptoms involving urination are still considered by major health bodies, such as the NHS (National Health Service), to be important, which is why it is still mentioned in current stories.
“However, I will concede it should be made clearer that this symptom only occurs when the cancer has grown.”
NHS, the national health scheme, states:
“Prostate cancer does not usually cause any symptoms until the cancer has grown large enough to put pressure on the tube that carries urine from the bladder out of the penis (urethra).”
Then it lists a litany of “Symptoms of prostate cancer can include:
needing to pee more frequently, often during the night
needing to rush to the toilet
difficulty in starting to pee (hesitancy)
straining or taking a long time while peeing
weak flow
feeling that your bladder has not emptied fully
I think there is a compulsion by website operators, even high-profile hospitals, to include LUTS as a cause. These sites will state correctly that prostate cancer is a “silent killer” and then list LUTS as NHS does.
Health agencies, hospitals, and the media need send out the correct message on LUTS and prostate cancer.
The Prostate Cancer Foundation, for example, is on target when it notes that “The growing tumor does not push against anything to cause pain, so for many years, the disease may be silent. That’s why screening for prostate cancer is such an important topic for all men and their families.”
So if you holding off on prostate cancer screening, starting with PSA, and waiting for LUTS, wait no more. There are problems with screening. But it potentially could save your life.
amen to that message
Education is key as you say. Many docs are involved. As patients, we've been working on it. There is a long way to go.