What Women (and Men) Need to Know About Prostate Cancer Screening: Part 2

Why Don’t More Men Get Regular PSA Tests?  A Partial Deep Dive

           Why doesn’t every man just get a PSA test at the yearly physical, starting at age 40?  Well, for starters, a lot of men don’t get yearly physicals.  And a lot of family doctors don’t order a PSA test for men in their 40s and even 50s when they’re checking for cholesterol and all the other stuff on routine bloodwork.

PSA Testing: The Back Story

           Note:  This is the why, as in, why your doctor hasn’t checked your PSA, or maybe even why the doctor won’t order a second-line blood test to help rule out cancer.  If you’re already looking at numbers and want to make sense of them and know what to do next, go right to Part 3.  

There’s some bad blood here, metaphorically speaking.  Misunderstandings and issues with PSA go back to the 1990s.  I was there, Gandalf; I saw it play out.  It started with how awful a diagnosis of prostate cancer used to be and how ineffective the treatment was.  Until the 1980s, very few men who were diagnosed with prostate cancer survived it.  One major reason is that there was no early screening for this disease.  The only way it was diagnosed was when it got big enough to be felt during a rectal exam, often after symptoms of more advanced cancer developed, such as urinary problems or back pain from metastasis.  Although prostate cancer had the reputation of being an “old man’s disease,” one you could “die with, not of,” this was often not the case.  I can tell you, from painful personal observation, that death from metastatic prostate cancer can be awful.

            The treatment itself was rough, and few lives were saved by it.  Radiation wasn’t yet powerful or focused enough, and surgery was brutal.  Patrick Walsh, M.D., the great Johns Hopkins urologist and my longtime coauthor, told me the radical prostatectomy (operation to remove the prostate) used to be “performed in a sea of blood.”  Surgeons couldn’t see what they were doing.  Men didn’t want the surgery because it had two terrible side effects:  everyone who got it wound up with urinary incontinence and impotence.

The relatively few men who did get the surgery had to supply their own blood ahead of time, because everybody who had a radical prostatectomy needed a transfusion.  Walsh set out to make this operation safer, and the first thing he did was figure out how to control the terrible bleeding.  Once he did, surgeons could actually see what they were doing – a breakthrough – and it was possible to preserve urinary continence.  Then Walsh discovered the neurovascular bundles– tiny scaffolds of nerves, one on either side of the prostate like Mickey Mouse ears – that control erection.  Previously, everyone had assumed that these nerves were inside the penis.  Surgeons performing prostatectomy routinely sliced right through them.  In medical textbooks, these are now called the neurovascular bundles of Walsh.

In 1984, Walsh did the first purposeful nerve-sparing radical prostatectomy.  That patient was potent immediately, his cancer was cured, and he lived nearly three decades longer.  Soon doctors from around the world were flocking to Johns Hopkins to learn the Walsh procedure.  Radiation got better, too – more powerful and less toxic to nearby tissue.  Deaths began to drop.  Since 1993, deaths from prostate cancer have fallen by half.  Of men diagnosed today, 99 percent can now expect to live more than five years, and the vast majority live much longer.  The key is early detection.   

 An Avalanche of New Cases 

             Yes, yes, you say, but what about the PSA test?  Well, in the late 1980s, when the PSA test first came out, there was a huge bubble of men being diagnosed with prostate cancer.  The number of new cases being diagnosed increased by 83 percent between 1988 and 1992.  As Northwestern urologist Hiten Patel, M.D., M.P.H., noted in the book, “This was no sudden epidemic of prostate cancer; the number of men with the disease was the same then as it is now.  It’s just that, for the first time, widespread PSA testing was picking up all cancers – early cancers destined to be lethal, and early cancers that were indolent and never at risk of harming the patient.”

            After that avalanche, (this often happens when a new diagnostic tool comes out), the number of new cases has slowed down.  The good news is that, because of PSA screening and with more effective treatment, the death rate from prostate cancer dropped by over 30 percent from 1992 to 2003.  In 2019, the death rate from prostate cancer was 53 percent lower than before PSA.

            What the PSA test did was, it bought time – allowing men to be diagnosed about five years earlier than they would otherwise have been.

 Doctors didn’t know what to do with PSA at first.  In the past, so many men with prostate cancer died terrible deaths that doctors went overboard the other way.  They treated a lot of men who didn’t need to be treated – but they didn’t know that yet.  Doctors were just so excited to have a way to prevent the horrible death from metastatic prostate cancer.  Also, there was a learning curve with the nerve-sparing operation.  Because it is so technically difficult, and few achieved Walsh’s results with open surgery, prostatectomy actually is done most commonly these days as a laparoscopic procedure, using a robot. In the 1990s and early 2000s, a lot of men had lingering side effects from surgery that was not done as well as it could have been.  Surgery that not all of them even needed.

            And then came the USPSTF.  In 2012, on a dark day for men’s health, the brain trust that is the Congressionally funded, policy-setting U.S. Preventive Services Task Force (USPSTF) recommended against screening “average risk” men for prostate cancer.  They remembered all the men who had been overtreated, the men with slow-growing prostate cancer who didn’t need curative treatment, and the men who were still dealing with incontinence and impotence from surgery, and impotence and bowel problems after radiation.

They did not seem to take into account that both surgery and radiation have gotten a lot more precise.  They didn’t take into account that some men don’t know their family history, and they didn’t take into account that not all men are the same: factors such as obesity, diet, cigarette smoking, and other environmental factors all can raise a man’s risk of getting prostate cancer.

Not only that: because of second-line blood tests, better MRI and other factors like PSA density (the PSA score divided by the volume of the prostate, as determined by MRI or ultrasound; this is another way to help tell if it’s likely to be cancer or BPH), and PSA velocity (watching what PSA does, and if it rises, how fast), doctors are a lot better now at figuring out who really needs to be treated.

The USPSTF’s 2012 guidelines did a huge disservice to doctors and their patients.  Millions of American men stopped getting PSA screening.  By the way, there was not a single urologist on that panel of geniuses.

            Unfortunately, there was a rise in men diagnosed with aggressive and advanced prostate cancer.  This created such an uproar in the prostate cancer community that this bad decision was walked back in 2018.  The USPSTF now says, “The decision about whether to be screened for prostate cancer should be an individual one.  The USPSTF recommends that clinicians inform men ages 55 to 69 years about the potential benefits and harms of prostate-specific antigen (PSA)-based screening for prostate cancer.”

This is a major change in language and policy, and a major step back in the right direction, although age 55 is too late for many men to start this discussion.

Also, men diagnosed at age 75 or older account for 48 percent of metastatic cancers and 53 percent of prostate cancer deaths, despite representing only 26 percent of the population.  So, most older men still need to be screened.  However: If a man is 75 and his PSA is less than 3, it is extremely unlikely that he will be diagnosed with prostate cancer.  If he’s 65 and his PSA is below 1.0, it is also unlikely that prostate cancer will be missed later in life, and he may be able to stop screening, as well.

Thus, if your doctor says something like, “There’s really no evidence that screening for prostate cancer extends life, and we want to avoid a lot of side effects of treatment,” that is wrong, it’s outdated, and it’s dangerous.

            So, to recap:  Men should start PSA screening in their 40s, ideally with a baseline PSA at age 40, because of the younger age of people being diagnosed with cancer these days.  Do not wait until your 50s to start.  Men with a family history of prostate cancer or other cancers should start at age 40.  Some men, if they have a strong family history of cancer, are diagnosed with prostate cancer in their 30s.  Who’s at highest risk?  Men with a family history of prostate cancer or other cancer, and Black men.

            Family history is key: In 2016, a cancer Dream Team funded by the Prostate Cancer Foundation published an article in the New England Journal of Medicine that was a stunner:  They showed that prostate cancer is a lot more of an inherited disease than anybody thought.  They found 16 bad genes that we now know to look for, including BRCA1 and BRCA2, which for years were only linked to breast, ovarian and other cancers, but not prostate cancer.  It turns out that 25 percent of prostate cancer runs in families.  And this is not just about the men in the family:  if a man has a known mutation in one of these genes, his sons and daughters and their children are more likely to develop breast, ovarian, or other cancer, too.

            Black men, please get PSA screening:  I wrote a story about one of the nicest men I ever met, diagnosed with metastatic prostate cancer at age 45.  He should have been diagnosed five years sooner.  He was a Veteran and a Black man, and had been in the hospital for several issues (including back pain) that should have raised a red flag.  But he never got a PSA test.  The VA does many things well with prostate cancer: they are pouring many millions into treatment for metastatic prostate cancer, which is to be commended.  But if they had an aggressive screening program, metastatic prostate cancer wouldn’t be such an issue.

I have talked to many Veterans since I started writing about prostate cancer in 1992.  All of them were diagnosed with metastatic cancer.  One is an exceptional responder and is now in remission.

Next, Part 3:  PSA Numbers and How to Make Sense of Them

In addition to the book, I have written about this story and much more about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org. The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.”  As Patrick Walsh and I have said for years, Knowledge is power: Saving your life may start with you going to the doctor, and knowing the right questions to ask. I hope all men will put prostate cancer on their radar. Get a baseline PSA blood test in your early 40s, and if you are of African descent, or if cancer and/or prostate cancer runs in your family, you need to be screened regularly for the disease. Many doctors don’t do this, so it’s up to you to ask for it.  Note: I am an Amazon affiliate, so if you do click the link and buy a book, I will theoretically make a small amount of money.  

© Janet Farrar Worthington