At 65, Jim Johnson says he feels like a young boy again. He says that he has none of the sexual tension or drive that begins around puberty and accompanies men through most of their adult lives.
"I don't have any of the desire for sex," he says. "Believe it or not, it's quite liberating. I feel a sense of freedom."
Johnson is in the advanced stages of prostate cancer and is receiving hormone therapy to reduce his production of testosterone, which some researchers say promotes the growth of tumors. (Johnson, who lives in Rochester, asked that his real name not be used because his business associates do not know about his health.)
At the time of his diagnosis, Johnson was 60 years old and had a thriving consulting business, he says. His children were grown, and after more than 30 years of marriage, he says that he was looking forward to growing old with his wife.
But a routine physical exam revealed some movement in Johnson's PSA level. The prostate specific antigen blood test is given to men to screen for prostate cancer, usually beginning around age 50. High PSA readings are often associated with some degree of prostate cancer.
Although early detection of prostate cancer increases the odds of survival, routine PSA screening has come under fire over the last few years. The controversy has become a major source of confusion for many men and doctors locally and nationally.
"My doctor said my PSA test was up just a little bit," Johnson says. "It didn't seem to be a big concern."
But a biopsy later revealed that even though Johnson's PSA level wasn't alarmingly high, that he was in serious trouble. In 2010, he had the gland surgically removed — a standard procedure for a man in his condition. But by then the cancer had spread to his lymph nodes, he says.
"The prognosis was that it was incurable and I would have about eight years," Johnson says. Since then, he's had radiation therapy, as well as the hormone therapy.
Johnson says that he remembers being in a daze after his doctor gave him the news. And he says that it's hard for him not to think about whether having the PSA a few months earlier might have improved his outcome.
"I was sitting there thinking, 'What does this mean?'" he says.
Despite everything he's been through, including his current struggles with severe depression — a side effect of the hormones — Johnson says he's grateful that he at least had the PSA test when he did because the aggressive treatment has extended his life.
"But I wouldn't be here today if I hadn't had the test," he says. "I would definitely recommend that it be given."
The prostate is an odd little gland that resembles a walnut; it's located just below the bladder. Considering its small size and unobtrusive presence, the prostate plays a vital role in reproduction. Its job is to produce the fluid that nourishes sperm cells.
Prostate cancer is the second leading cause of cancer deaths in men after lung cancer. The American Cancer Society estimates that about 233,000 new cases of prostate cancer will be diagnosed in 2014, and that nearly 30,000 men will die from the disease.
Age is a major factor. The occurrence of prostate cancer increases dramatically in men over age 50, particularly if the man's father or grandfather had the disease. And for some unknown reason, it occurs more frequently in black men. Men who have been exposed to Agent Orange, use some athletic enhancement drugs, and are going through transgender treatment may also be at heightened risk.
The PSA test was developed at Buffalo's Roswell Park Cancer Institute, and was a major discovery in cancer research. Up until about the mid 1970's, prostate cancer was frequently detected in its advanced stages and a diagnosis meant about a 4 percent survival rate. The test was initially used in forensic cases such as rape to determine the presence of semen.
It wasn't until the mid 90's that the test was used to screen for prostate cancer. And its role in early detection has been heralded as one of the great successes in the battle against cancer.
But as critically important as the PSA test has become, several studies challenge its widespread use and reliability. Much of the concern stems from recent findings from the European Randomized Study for Screening Prostate Cancer, which monitored more than 160,000 men between the ages of 55 and 69.
The extensive nine-year study shows that PSA screening resulted in at least a 20 percent drop in mortality rates from prostate cancer.
But the researchers also said that the widespread general screening has increased the risk of over diagnosis, and that some men may be treated for cancers and other prostate problems that may not be aggressive or life-threatening, says Dr. Edward Messing, chair of the University of Rochester Medical Center's Urology Department.
"The biggest problem is that many cancers are not likely to affect your life," he says. "But so many men with small focuses of cancer, with encouragement from their doctors, decided to pursue treatment. Some of those treatments will turn the prostate into cardboard."
Almost all of the treatments and procedures, even the biopsy used to confirm the presence of cancer, pose physical and mental health risks, Messing says. That's partly because of the location and makeup of the prostate. It's close to the rectum wall and the bladder, and the urethra that allows urine to flow out of the body runs right through the middle of the gland.
Treatments such as surgery to remove the prostate and radiation therapy to kill cancer cells often leave men incontinent. And the prostate gland harbors the nerves that provide sexual function. The treatments often damage those nerves, sometimes irreparably, though new surgical techniques can sometimes spare the nerves. While the treatments can extend the patient's life, the combination of surgery and radiation can be debilitating and greatly impact the quality of that life.
"There are those people who are against getting the PSA because the cancer is so slow-growing, and I think that is a mistake," Messing says. "People are suffering from some of the side effects, but there are also some men suffering from some very aggressive cancers with a capital C."
At the crux of the debate are the limitations of what researchers currently know about prostate cancer.
"We don't want to throw the baby out with the bath water [by not screening]," Messing says. "But the problem is we don't have a test today that says 'You have a really good cancer, and you have a really bad, aggressive cancer.'"
Messing says that his research shows that if the PSA had been eliminated during the early 2000's through 2009, for instance, the number of men with advanced prostate cancer would've tripled.
He also doesn't agree with research suggesting that elderly men shouldn't be given a PSA or treated for prostate cancer because they're likely to die from some other health problem. It all depends on their health, Messing says.
"You could be robbing them of years of life," he says.
While there are extremely sophisticated diagnostic tools that are just starting to become available, as well as excellent treatments and promising new treatments in development, deciding what might work for each man is a complicated process.
A lot depends on the stage that the cancer appears to be in, the age of the man, and a whole host of other factors. Some men who don't appear to have an aggressive cancer are choosing what is called "watchful surveillance."
Others are taking heavy artillery approaches — robotic surgery, beam radiation, brachytherapy — even though there is no perfect way to know if they're warranted, or if they will even work. Between 20 percent to 30 percent of men who have surgery to remove their prostate will have a cancer recurrence after five years, according to the Prostate Cancer Foundation.
Hermann Vogelstein says that for him, it's not a matter of whether or not to take the PSA. He had a PSA test in August 2013 and waited until that October to have a biopsy, which came back positive. The 63-year-old Brighton man says that he questioned whether or not he should have a biopsy, but that his father died of prostate-related bone cancer, which places him in a higher risk group.
The real issue is what men should do with the information from the biopsy, he says.
"What's important is what you do next," Vogelstein says. "Some people think, 'I've got cancer. I've got to get rid of it,'" he says.
Vogelstein has had several tests and he's meticulously researched his options, including some of the newest procedures. And he says that he's fully weighing the risks of each option.
The cancer doesn't appear to have metastasized, he says, which means it hasn't spread from the prostate and may not be terribly aggressive. If there had been slightly less cancer in his biopsy, he says that he would have gone with watchful surveillance. And he says that he may still take one of the less heavy-handed approaches to treatment.
"Am I going to go for something that has the best chance of a cure with the most difficult side effects, or should I go for the least invasive and the less impact on my lifestyle?" he says. "I'm still working on that."
Patrick Fisher is program director for the Rochester chapter of Us Too, a nonprofit that's part of an international network of support groups for men with prostate cancer. Fisher, a prostate cancer survivor, says that he helped found the local chapter because he discovered that some men, like Vogelstein, have pre-treatment questions and others have questions after treatment. There weren't many places locally where men could talk freely about their concerns and share information, he says.
"I thought this was exactly what this community of men needed going forward," Fisher says. "We didn't know what to expect because we didn't advertise, but lo and behold, we had 30 people at our first meeting just through word of mouth."
In addition to monthly meetings, the organization raises funds through events such as "Cars for Cancer," a car show and men's health screening day on Saturday, September 6. (More information: baytownecarshow.com)
Getting used to the C word is the first challenge for most people, Fisher says.
"Relating to the word 'cancer' is difficult for most of us under any circumstance," he says. "And when you're the one who's been diagnosed, we tend to think it's the end of life."
There's some evidence that men in the US have also historically been less proactive about their general health, Fisher says, and prostate health can be particularly challenging because of the horror stories.
"It's a natural reaction for men to think that their manhood is at stake," Fisher says. "There's the problem with urinary incontinence, but then there's the sexual dysfunction. If the man is married or in a relationship, their first thought is 'What's going to happen to that relationship?'"
Fisher says that he schedules experts to come to Us Too's meetings to present on a wide range of topics, such as understanding treatment options, overcoming obstacles and setbacks, and learning the latest research. But one of the most important goals for Us Too is making sure that wives, same-sex partners, and significant others feel welcome and participate, Fisher says.
"Prostate cancer impacts almost every aspect of a man's life, including those important relationships," he says. "It can be a test for some."
Johnson says that even though the cancer hasn't been easy for him and has eliminated his desire for sex, that his relationship with his wife has never felt stronger.
"My wife has stood by me and I feel closer to her than I ever have," he says.
Prostate cancer has forced him to re-examine what masculinity means and what it means to be a husband and a father, he says.
"I feel sorry for some men who have defined themselves by their sexuality and macho type of thinking because this is going to be really hard for them," Johnson says.
For some men, the difficulty that Johnson refers to may be a result of the culture's ideal of manliness. But there's another problem: How do you make the best decision possible knowing that the research on treatment isn't clear and precise? What might work for one man may not work for another.
And how do doctors help patients weigh the risk of possible side effects in their decision-making? Being comfortable with that decision could make a huge difference in how a patient feels about the outcome.
As one man put it, "I desperately want there to be a best option."
Dr. James Dolan at URMC says that he wants to know if men newly diagnosed with low-risk prostate cancer could benefit from some type of interactive software program that aids in their decision-making.
Dolan's team has developed such a program. A study in conjunction with the Rochester chapter of Us Too should begin this fall, Dolan says.
This type of consultation aid could take some of the angst out of decision-making, Dolan says, and help men better understand their choices. Relying solely on the advice of doctors and their explanation of the side effects of treatment has some drawbacks, he says.
"Based on current evidence, there is no one best treatment for everyone," Dolan says.
