I’ve started to write about PSA tests and prostate cancer several times but the article became so long I have had to split it up into two Substack posts. This article is about my personal experience with PSA screening tests. Next week’s article is about the difference between screening tests and diagnostic tests.
I recently read the MedPage article by Frances S Collins, MD, PhD, age 74, who has been “actively surveilled” for five years. Dr. Collins has been frank in his article. His targeted biopsy five years ago indicated “a slow growing cancer and he was referred to active surveillance.” In the article we aren’t told exactly how much or how often he has been surveilled.
He reports that a month ago his PSA shot up to 22 ng/mL. An MRI demonstrated that the tumor had grown significantly and new biopsies indicated that this cancer had gone from slow growing (Gleason score was not mentioned) to a Gleason score of 9. We aren’t told whether that’s a 5+4 or whether it’s a 4+5.
For those who don’t know, the Gleason test is named for Dr. Gleason, a pathologist and the test has been around for years. The Gleason test is considered to be predictive of five-year survival. This is a histologic examination (microscopic) performed by a pathologist. There are two components to the Gleason score, but they both have to do with the microscopic appearance of aggressiveness. The most common cancer cell type (the first number), and the second most common cancer cell type (the second number) are reported separately.
The maximum score in each would be 5 + 5 for a total of 10. The most common score is a 6, or a 3+3. A score of 7 is considered a watershed, with 3+4 falling into the low risk group (greater chance of five-year survival) and the 4+3 falling into the high-risk group, meaning less likelihood of surviving five years.
In addition to the Gleason score, there are other factors which can be determined by microscopic examination of the prostate tissue. These include the size of the tumor, which is estimated by how many core biopsies have prostate cancer (adenocarcinoma), how aggressive each core is, capsular spread, or breaking through the capsule of the prostate into lymphatic tissue, lymph node spread, and spread along nerves.
Dr. Francis reports a positron emission tomography (PET) scan was ordered but the results were not included in the article. Prostate cancer which has metastasized beyond the prostrate capsule carries a five-year survival rate of 34 percent. A Gleason score of 9 is a bit of a wild card, with five-year survival anywhere between 34 percent and 80 percent depending on how much cancer there is and where it is.
Typically, in the past, radical prostatectomies have been reserved for men who have had no evidence of metastases. With a radical prostatectomy, all pelvic lymph nodes are removed surgically or at least as many as can be taken. In older men, those in their 60s or 70s, radioactive prostate seeds have been used as an alternative to a radical prostatectomy. For men who have localized pelvic lymphatic spread of prostate cancer, the usual treatment is external beam radiation delivered to the lower, abdomen from outside the body.
Why am I going into all this detail about Dr. Collins? One of the remaining advantages of being a physician is the ability to identify healthcare manure. A lawyer friend of mine told me years ago that her success was due to her ability to identify manure when she saw it.
She said it didn’t matter whether it was in the boardroom in Manhattan or the barnyard, manure is manure. So, when the U.S. Preventative Services Task Force (USPSTF) recommends to not screen with PSA, I felt this recommendation was essentially manure. I can choose to not follow what I thought was bad advice for myself or for my patients.
Like many men, I had ignored the fact that three of the four lines of my family contained deaths from prostate cancer. But I developed a rather remarkable backache, and since I had remembered my dad’s uncle in 1957 dying from prostate cancer which had metastasized to his backbone. creating weeping lesions on his skin, I became concerned.
My first PSA was 3.3 in March of 2006. I thought that was a little high. So a rechecked my PSA again in August of 2006. In 5 months my PSA had jumped to 7.5. Luckily, I had a good physician friend who referred me to the Mayo clinic. I was there within a few weeks for a biopsy. My Gleason score came back 7 but it was a good 7, that is, 3+4.
I found a good surgeon who at that time in February 2007 would do a robot-assisted radical prostatectomy. As it turns out, the other risk factor that I had besides family history and a Gleason score of seven was neurovascular space involvement. Lymph channels and nodes were negative.
That was in February 2007. Between 2007 and 2020 I had my PSA checked every six months and the results always came back as undetectable. So, I consider myself very lucky. I’m now 76 and still cancer free.
I was lucky to have a Gleason score, which was fairly clearly problematic, and I was also lucky to get the biopsies at just exactly the right time. I’m happy that I didn’t wait for even another month or two to check my PSA, as it was rising rapidly.
As a physician, I’ve seen the fruits of “active surveillance” recommended by the USPSTF too many times. While Dr. Collins does not say how often his “active surveillance” occurred, the article infers that during this surveillance his prostate cancer turned from easily treatable to treatable with difficulty.
No reasonable person who understands the surveillance process could conclude otherwise. And that’s the worry for the USPSTF crowd. Dr. Collin’s report may serve as a warning to other men who are being similarly “actively surveilled.” In other words, what does that mean for the individual patient and doctor?
As a physician, I have taken care of many men who have prostate cancer who were diagnosed late. Per the USPSTF guidelines, we are not supposed to PSA screen men over 70 because they will die from something else first. My experience is that they do indeed die from the prostate cancer.
Although our federal government tells us that people in North Dakota live an average of 76-77 years, I have seen numerous patients outlive that average. We have many people farming into their late 80’s and 90’s. And yes, we have many 100-year-olds still driving without trouble and living independently.
So, when a man dies from prostate cancer at age 75 because we’ve followed all the rules and we haven’t checked a PSA, the patients and their families do not want to hear that sooner or later they would have died from something else anyway. That is not a consolation. For us, we are potentially robbing this man and his family of 20, 25, or even 30 years of life.
When I changed practices and arrived at a new clinic and hospital in 2016, I couldn’t believe the consequences of the USPSTF guidelines recommending against PSA screening. Back in 2013 and 2014 the “good news” was that the rates of prostate cancer decreased significantly. Well, of course the rates dropped. If you don’t test for prostate cancer, you’re not going to find it. I predicted then that we would see a resurgence of more advanced and less treatable prostate cancer, which is exactly what has happened.
As a result of that USPSTF edict, and the consequences of many doctors following that edict, there were many men in this new practice who had had either very complicated prostate cancer treatment and were still alive or who had had very complicated prostate cancer treatment and were now dead. This in a rural area with a population of two persons per square mile. The numbers spoke volumes.
I found five untreatable prostate cancers in one year. These deaths were miserable. Many developed pelvic lymph node spread which shut off lymph and venous return to their legs, causing remarkable edema as well as obstruction of ureters requiring tubes through the back to drain the kidneys until they died.
One man had benign prostate biopsies for several years. He developed symptoms of prostate hypertrophy, and because his condition was considered to be “benign” he had a TURP, which is a transurethral prostatectomy. The shavings revealed a Gleason 8.
Because of the treatment for the “benign” condition, and the mistreatment of the cancer, he lost his eligibility to have a radical prostatectomy or to have seeds placed. So he had to have the more morbid procedure of the external beam. Because he was very much overweight, he had to have extra radiation.
Many of my patients who have died from prostate cancer are over 70 years old. We are not supposed to check these men at all for prostate cancer under any of the guidelines. But I believe it is still wrong for a healthy 75-year-old man to die from a treatable prostate cancer. In my rural area a 75-year-old man could easily live another 20 years. Who among you would like to lose an additional 20 good years?
Lately, there’s been ramped up verbiage about screening and testing for early cancer treatment. These screens and tests are now considered by many to be unreliable and therefore not helpful.
Here’s the moral to my story. I did NOT want to be “actively surveilled” for five years and suddenly discover that I had a very aggressive prostate cancer that went from treatable with ease to treatable with difficulty. I am now 17 years cancer free, happy, comfortable, and grateful. I applaud Dr. Collins for sharing his experience with active surveillance.
Next week I will delve into the difference between a screening test and a diagnostic test and why just because a screening test is nonspecific does not mean it has no use in monitoring prostate cancer.
I enjoyed this article, and I agree with your comments about statistics. Statistics can lie, and when they do, they lie badly.