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PSA: Don't ask, just test? Are you OK with that?
Part I: The role of consent
By Howard Wolinsky
When I had my first prostate-specific antigen (PSA) blood level in my early 50s, I recall vaguely a discussion that this test could detect prostate cancer. My doctor said the test was recommended. I could have declined as many men do.
I had had no serious health threats up to that time. My father didn’t have prostate cancer. So why not? That quick decision changed my life.
Eventually, my PSA rose to just under 4 ng/mL in June 2010. I had an ambiguous biopsy which I repeated in December 2010, that uncovered a single core of less than 1 mm. of Gleason 6. It was bad prostate day for me.
I have had more than 80 cores removed in six biopsies. Only one core in 2010 was positive for cancer.
(These days, with MRI, if I was starting over, I don’t think I would have been diagnosed at all.)
I support PSA testing if patients want it and understand the downsides of what they may be getting into.
I also support a patient-doctor discussion of the implications of taking a blood test that can lead you down a rabbit hole to life-changing results with high anxiety and even on to aggressive treatment with serious side effects.
I have started asking men on active surveillance for low- to favorable intermediate-risk prostate cancer about their first times—with PSAs.
I have been shocked at how many—most— tellong me they didn’t have a PSA talk. The doctor simply ordered a blood test and before they knew it they were facing biopsies and diagnoses. I am not aware of any studies on this.
I also have encountered men who explicitly have told their doctors they didn’t want PSAs, and their doctors ordered testing anyway. That seems wrong.
This brings us to a prominent urologist—E. David Crwaford, MD, of the University of California, San Diego—who is championing the idea that patients skip the discussion. He says PSAs should be done as routinely as lipid tests or taking a temperature,
He says routine testing will help ferret out dangerous prostate cancers while allowing men with low PSAs, below 1.5, to skip such testing for maybe five years.
Find the cancers, and leave guys with low PSAs alone.
Here’s the basic idea: Prostate cancer rates are on the rise, per the American Cancer Society, and more men are being diagnosed with untreatable metastatic cancers. More common use and wiser use of PSAs—along with MRIs—are being suggested to turn the situation around.
So maybe we should formalize and streamline taking PSA tests without a discussion —don’t ask, just test.
Consider this: When you have a basic metabolic panel (BMP), chances are your doctor doesn’t explain exactly what the blood test is measuring and why.
You may know about glucose, or blood sugar, the mineral calcium, and the electrolytes potassium and sodium.
But do you know about chloride, bicarbonate, blood urea nitrogen (BUN), and creatine and why they are being tested?
Probably not. I have a recurring problem with slight elevation of BUN, a protein breakdown product used to assess the health of your kidneys. My primary care doctor advised me to drink more water before a BMP--I tend to be dehydrated--and my BUN would be normal. He was right.
Since you’re testing anyway, why not sneak in a PSA blood level into panels like this? No extra effort and potentially some good if an advanced cancer is found.
PSA testing, in general, has fallen. Typically, maybe 30% of eligible American men bother with a PSA. Some urologists and patient advocates worry that the low uptake of PSA results in later diagnosis and treatment of advanced prostate cancers.
Crawford, a testing guru, suggests that PSA testing simply be done like testing for BUN or creatine, tblood pressure, or weight—without explicit consent or explanation. He envisions explaining PSAs only if a patient is found to have an elevated PSA.
E. David Crawford, MD: a man with a plan)
I know of several instances of PSAs being done without informed consent. They were disasters.
Two patients, one a prominent medical writer and patient advocate (story to come soon) and the other a young man in his 40s whose father was diagnosed with prostate cancer, were angered about having had PSA tests to which they never consented and didn’t want.
The young guy was stunned when he saw PSA results in his hospital portal--a test to which he had not given consent or explanation. His results were fine, but he felt violated. The medical reporter was angered because he had had “the talk” with his family doctor and opted NOT to be tested.
Psychotherapist Michael Jon Altman wrote a few weeks ago in a first-person piece in TheActiveSurveillor.com about a similar experience:
“Fast forward to a couple of years ago when my 14.4 PSA score made an even greater impact: more like a punch in the solar plexus. My primary-care physician took the liberty, unbeknownst to me, of ordering a PSA (prostate-specific antigen) blood level screening.
“I was furious, and admittedly, the high score fueled my confrontation with the doctor, having learned how unethical it was to do that without my permission. He apologized profusely, and I really liked him, so we moved on.”
A fourth anecdote is about “Henry.” I told his story in MedPageToday in 2018.
Henry had seen his new university-based family doctor, whom he referred to as Doogie Howser, a snarky comment about a doctor who was young, simply to refill a prescription for hypertension medications and found himself referred to the lab for some blood tests. In short order, he had a report showing a prostate-specific antigen (PSA) level of 5 ng/mL from a test he didn't know he had taken, plus orders to report for a prostate biopsy.
Nobody had told Henry, 67, the purpose of PSA testing. He wasn't informed he was facing potential false positives and overtreatment along with risks for impotence and urinary and bowel incontinence if he were treated. Nobody told him about the risks of a transrectal biopsy, including bleeding, sepsis, hospitalization, and even death.
Anne Katz, PhD, RN, a clinical nurse specialist in Winnipeg, was called in to help Henry. She described the case in an ASCO Connection blog post under the headline: "Shared Decision Making in PSA Screening: A Good Idea With Little Follow Through."
"Henry did not know that one of the blood tests was a PSA test. He had never had one before, and his previous physician had not suggested this to the best of his recollection. He was confused and angry and did not know what to do. Should he have the biopsy? He wasn't sure what that meant. Did he have cancer and was he going to die? Why was this happening to him?" she wrote.
Katz cited research showing that 21% of men undergoing PSAs in 2010-2015 were only told the advantages of PSAs and not the downsides. They didn't know for the most part that they had a choice on whether to be screened, and they were unaware that there is uncertainty about whether PSA saves lives.
I spoke with Katz about how patients like Henry are left out of the loop in this so-calle era of "shared decision-making.”
She told me, "I think there are a number of points where shared decision-making needs to happen. It needs to start when a man is of an age where PSA screening is offered. Henry had a right to know that this test was recommended, was supported, or in reality whether it's questionable. So he had a right to a discussion [prior to testing]. 'This is what it means. This is what it measures. These are the ramifications.' So that's the first point for shared decision-making.
"Then, when his PSA comes back, he needs a discussion about, 'OK, your PSA was slightly above the normal range for men your age. Do you now want to have a biopsy? It is general practice that if your PSA is raised, we have a biopsy because we're looking for cancer. Are you in agreement to go for that referral to the urologist?' When the results of that biopsy come back, that man needs shared decision-making about what happens next: Active surveillance, surgery, radiation, cryotherapy, whatever is appropriate. Shared decision-making needs to happen at multiple points along that trajectory."
Many of us are being treated in a land where doctor still knows best, and you have to fight to be heard and participate in decisions impacting your life.
Katz said she finds shared decision-making is not taking place because of brief doctor visits, remuneration issues, fears about malpractice, perceived low levels of health literacy, and doctors simply forgetting to address these issues.
I once asked a support group of about 20 men on Active Surveillance if their doctors asked their permission before performing a PSA. Maybe it was a quirk. But none of the men recalled having “the conversation” about the risks of PSAs with their primary-care docs. Crawford notes that PCPs order 90% of PSAs.
Stephen Spann, MD, founding dean of the Tilman J. Fertitta Family College of Medicine and vice-president for Medical Affairs at the University of Houston, a family physician who has researched PSA, said the idea to measure PSA levels without consent “is ethically flawed because you’re doing something on a patient that may have an adverse outcome.”
(Stephen Spann, MD)
But he added: “The evidence is that your risk of dying from a complication of a statin is way, way, way lower than your risk of dying from a heart attack if you don’t treat your hyperlipidemia. The risk of treating high blood sugar is that you have to modify your diet and your lifestyle. But those things don’t produce major complications like impotence and incontinence, so I think to say, well, we ought to just do PSAs on everybody is ethically flawed because you’re doing something on a patient that may have an adverse outcome.”
Spann, 70, who himself has not had a PSA test, recounted a story about an OB/GYN colleague in his 40s who, on a whim, underwent a baseline PSA test at the suggestion of his nurse.
“Well, it came back high. He had a pretty low-grade prostate cancer. He got a radical prostatectomy, and he was left impotent and incontinent and he became seriously depressed; ended up divorcing his wife. It’s likely that that radical prostatectomy may not have prolonged his life one iota,” Spann said. “I can tell you patients that I have screened because they wanted me to screen them who ended up being diagnosed and getting a prostatectomy, and all those side effects tell me ‘I wish I never had the test.’ So, I really think, when the tests can lead to possible adverse effects, I think, you do need to get some kind of informed consent.”
He added: ”I personally think from an ethical point of view, doing a test on a patient which is a procedure that can have adverse consequences, without their informed consent, without them understanding the potential benefits versus harms, I think that’s unethical.”
The feisty Crawford bristled at Spann calling PSA testing without consent unethical.
“Yeah, you could say that. It’s unethical if you proceed and then do something without making an informed decision and discussing it. I’d say it’s unethical not getting an informed decision to check somebody’s blood pressure or their weight because if you can check somebody’s blood pressure and you put them on an anti-hypertensive, they become hypotensive, go out, fall, and hit their head on the sidewalk and have a subdural and die. … Yeah, the same thing with cholesterol. They check your cholesterol, but they don’t tell you if they put you on a statin, you can have rhabdomyolysis, renal failure, and die from the statin. When do they talk to you about it? When the test is abnormal and when they talk to you about options and diet and other things you can do.”
He added: “We get this stuff with informed decision-making and things like that. Yeah, that’s fine. But it ain’t going to happen. If a family practice doctor spends 10 minutes doing an informed decision with you, he’s biased one way or the other, and he’s really not spending time wisely talking to you about your diet and being overweight, hypertension, and your cholesterol and everything else that is out there.
“If you see your family practice doctor, do they get informed consent to check your weight, blood pressure, cholesterol? Hell, no! When do they get it? They get it when the thing is abnormal, when they’re going to treat you. Why is PSA any different? PSA is a good screening test for size of the prostate, prostate cancer, inflammation. If the test is abnormal then you get an informed decision about what you should do. That makes more sense than this craziness talking about informed decisions.”
I asked an old friend about this issue, George J. Annas, JD, is the director of the Center for Health Law, Ethics & Human Rights at Boston University School of Public Health. He also is author of the classic “The Rights of Patients: The Authoritative ACLU Guide to the Rights of Patients.”
(George Annas, JD)
(George Annas, JD, has no skeletons in his closet.)
(George inspired me back in the 1970s to go to law school to study health law. I applied and six schools accepted me. He wrote recommendations.
(In the end, I decided to spend the next 50 years as a medical journalist. Right decision? Who knows?)
Annas responded to Crawford’s proposition of testing for PSA: “I don’t want to hurt this doctor’s feelings, but it is the patient’s decision to get a PSA test or not, not his. The reason is that this test is not benign but has serious risks, including false positives, which lead to a series of follow-up interventions, most notably unnecessary and painful biopsies and even unnecessary surgery. Even the CDC, which generally encourages cancer screening, thinks only the informed patient should decide about the PSA. (See https://www.cdc.gov/cancer/prostate/basic_info/benefits-harms.htm)
“In short, it's the patient’s prostate…and the patient that has to live with the consequences of a PSA screen, not the doctor.”
Should we undergo PSAs without discussion? Or should we be informed about the benefits and risks of what can be the first step in a long cancer journey? What do you think?
Please answer a questionnaire on PSA and consent: https://bit.ly/3MgvXRY
ASPI program on medical imaging
Andres Correa, MD, urologic oncologist, assistant professor of surgery, Fox Chase Cancer Center in Philadelphia, tis involved in the next program on imaging in the AS 101 series. The free program is on at noon Eastern, Saturday, May 27. REGISTER
The AS 101 series was created to provide newbies with video covering the basics of AS when no other help is available. Patient Larry White and his well-informed spouse Nancy will interview Dr. C. about mpMRIs and microultrasound, an emerging imaging technology.
The full AS 101 series to date may be viewed at: https://aspatients.org/a-s-101/