Dan Potter, left, and Keith Hall stand Friday, Sept. 23, 2016 in CHI Memorial's Missionary Ridge Building.Dan Potter thought he just had a low testosterone level.
Doctors checked his pituitary gland and even tried testosterone replacement therapy, but then a test showed that his prostate gland was enlarged.
He was referred to CHI Memorial prostate specialist Dr. Lee Jackson, who did a blood test and noticed that his PSA level was unusually high for a guy who was only 42 years old.
PSA stands for prostate specific antigens, a substance produced normally by the prostate gland. As a man ages, the level increases, but Potter's PSA was way out of line. "My levels were that of a 75-year-old," said Potter, who works in the environmental services department at CHI Memorial.
Keith Hall, 56, a radiation detection specialist at TVA's Sequoyah Nuclear Plant, had checked his PSAs every year since he was 40, and they were always below a level of 4.0, what most doctors thought was normal. But then he skipped a checkup for a year because he was building a new home. When he went back to his doctor two years later, his level had skyrocketed from 2.4 to 10.
He already knew something about prostate cancer - his dad had had it.
"I thought maybe by the time I was 70 I would have it, but I never dreamed I would have it in my 50s, 15-18 years before his occurred," Hall said.
Both Potter and Hall are fortunate. Their cancer was discovered early and they each had surgery that appears to have removed the cancer, they said in a joint interview recently in the office of their prostate cancer specialist, Jackson.
But millions of men avoid getting checked for prostate cancer, primarily because of confusing information about whether they should be tested and because of misinformation about how likely a cure is to leave them incontinent or unable to perform sexually, Jackson said.
"There has been a fear of the diagnosis, a fear of treatment, and a misconception that if you live long enough, you will get prostate cancer anyway, and therefore it is trivial," he said.
The odds a man will be diagnosed with prostate cancer are high - one in six. But it is not trivial. Prostate cancer is the second-most-deadly cancer for men, after lung cancer, killing 27,000 every year. (Women don't have a prostate gland and so don't have to worry about prostate cancer).
The normal test for prostate cancer is to measure the levels of PSA in the blood. It's a simple test, introduced in the late 1980s, that dramatically improved doctors' ability to treat prostate cancer.
"Prior to the early '90s, most men diagnosed with prostate cancer were dying from end-stage disease," Jackson said. "There wasn't anything we could do about it."
The PSA test let doctors find the cancer early, and the death rate dropped 40-50 percent, he said.
But the PSA test is not always reliable. As much as 70 percent of the time, a high level does not turn out to indicate the presence of a dangerous prostate cancer, and the only way to find out is to do a biopsy, which risks complications and infection. And sometimes prostate cancer occurs despite a low PSA level.
"Because of our limited ability or flawed ability to pursue changes in PSA levels, we were over-diagnosing and over-treating," Jackson said.
The treatments for prostate cancer, generally surgery or radiation, both also have short-term side effects, including incontinence and erectile dysfunction. And prostate cancer often progresses very slowly, if at all, sometimes taking as long as 15-20 years to develop.
Because of the risks from treating men who turned out not to have cancer, and the chance the cancer wouldn't be a big issue anyway, the U.S. Preventive Services Task Force, a national organization that advises doctors on how to treat various medical problems, recommended that PSA screening be dropped.
The ruling was controversial, and it is being revisited by the organization.
But Jackson and other prostate cancer specialists argue a new testing procedure that combines PSA screening with a magnetic resonance imaging scan is much more accurate in determining whether a biopsy is needed.
"The whole issue of over-diagnosis and over-treatment will disappear as people become more comfortable with using an MRI of the prostate," he said.
The difficulty, for now, is that evaluating the MRI is not an easy task and requires a skilled radiologist.
"In the hands of a very skilled radiologist, his MRI is not going to pick up a trivial prostate cancer," Jackson said. "He is not going to ID a cancer I don't need to deal with. He will only pick up potentially lethal prostate cancers."
Jackson used the propcedure to diagnose both Potter and Hall.
The problem is in identifying skilled radiologists, he said. For now, insurance companies are not willing to pay for the MRI, which costs about $1,800, arguing there are too few radiologists with the skill needed to properly evaluate the image.
That angers Jackson.
"It is absolutely maddening. We have finally come up with a better way of diagnosing prostate cancers," he said. "An MRI can reduce biopsies by 30-50 percent, and we have had huge cost savings."
While he believes insurance companies will eventually come around, "they take years," he said.
But difficulties with diagnoses are not the only reason men don't get checked for prostate cancer.
There is a lot of misinformation out there, Jackson said, about how treatment for prostate cancer can cause a loss of sexual function or control of urination.
Jackson is an expert in his field - he has done more than 1,500 operations, using the Da Vinci surgical robot, but treatment for prostate cancer, whether surgery or using radiation or some other method, regularly leads to temporary incontinence. Many men also report an inability to have an erection immediately after the operation.
Those side effects are unavoidable, Jackson said, given the location of the prostate gland, but they are generally only temporary.
The prostate is a small, walnut-sized organ between the bladder and the penis. The urethra, which carries urine and semen out of the body, runs through it, and it is very close to muscles and nerves that control sexual performance.
Jackson said in his experience, while almost all patients report an inability to control urination for the first few weeks after surgery, only some 5 percent report problems after between three and six months, requiring them to occasionally wear a pad.
"There is a misconception based on information from 20 years ago," he said, "that 50 percent of those treated for prostate cancer will be incontinent. But that is not true." He noted that many men over the age of 65 have similar problems with incontinence, even if they don't have treatments for prostate cancer.
Jackson's patient, Potter, said he had incontinence problems for about a month. Three months after his surgery, "I still keep a pad on to make sure there is no leakage," he said.
Hall, who had his surgery 14 months ago, said he does not need a pad for normal activities.
"If I'm out in the yard bending over or squatting, I'll use a pad because I feel leakage if I squat down," he said.
The statistics for a loss of sexual function are also encouraging.
"Guys like Mr. Potter, who are in their 40s or 50s, and don't have other serious health issues, have an 80 to 85 percent chance of recovering, but it will take one to two years," Jackson said.
Only three months after his surgery, Potter said he was "not even close" sexually, although he is hopeful.
But he and Hall both came forward to tell other men of the importance of getting screened.
"If it gets one more man into the office to get a checkup, it would be worth it," Hall said. "I've shared it at work, in class, at church. When you say one out of six [men will get prostate cancer] that is a huge percentage."
Potter, who was in his 40s when he was diagnosed, believes some of the reluctance to get screened is generational.
"Most men getting prostate cancer are 60-80," he said. "That generation has the John Wayne mentality - they don't want to share their emotions. They don't want to share anything that has to do with their sexual reproductive system."
But as Potter put it, the alternative is not that attractive.
"Mentally, sex is important," he said. "But living so you will be around your kids for another 30 years is more important."
Contact staff writer Steve Johnson at 423-757-6673, sjohnson@timesfree press.com, on Twitter @stevejohnsonTFP, and on Facebook, www.face book.com/noogahealth.