Earlier today, Prostate Cancer Canada (PCC), a national prostate cancer advocacy, support and research funding organization, released a set of new recommendations about when and how to use Prostate Specific Antigen (PSA) testing and screening.
This is a time when most of the rest of the world is increasingly aware of over-diagnosis and over-treatment of diseases like breast cancer and prostate cancer. As a result, most new screening guidelines are getting more restrictive in terms of who should be screened and when. Why does PCC seem, then, to be flying in the face of that trend by encouraging a PSA test earlier (in a man’s 40s or even 30s) and perhaps even maintaining PSA testing later (beyond 70s) than others feel the data warrant.
At the heart of the new PCC recommendations is the idea that men should avail themselves of a BASELINE PSA test in their 40’s, or if they are known to be in a high risk category, even in their 30’s.
To be clear, PCC is NOT advocating for routine, annual PSA screening starting in a man’s 30s or 40s. They are advocating for a man, as their campaign states, to “know your number”. The idea is that if you know your baseline number when you are younger, then it is a lot easier to monitor changes over time. Indeed, we know that changes in PSA levels over time can be more of a red flag that the absolute numbers per se. Logic would say after all ‘How does one know if there is a change if one doesn’t have a baseline to compare to?’
For PCC, this is all part of a process they endorse of truly shared decision-making between patient and health care professional. PCC states in its press release that once the baseline is taken, then an individualized plan should be devised as to how often a retest should be done. Criteria for that decision might include not only the PSA test results, but also physical exams (e.g. digital rectal exams), family history and/or being part of a higher-risk ethnic group and so on. In some case the combination of factors might presumably mean retesting on an annual basis, or in others, only after many years may have gone by.
A similar nuanced message pertains to the PCC view about not arbitrarily stopping PSA testing at age 70. The notion is that many men live longer than ever, and therefore an individual’s circumstances should be taken into account as the primary decision-driver, not some arbitrary guideline designed for the “average” person.
All of this sounds very well reasoned on the surface, and far be it for me to suggest that this guideline is right or wrong.
But I do have a number of real concerns.
First of the bat, it is my concern that this recommendation, while only hours old, is already causing confusion. Most of the media pickups seem to be making the appropriate distinction between a “baseline” test and PSA screening per se, but the headlines do not often make that distinction. They refer to PSA testing or PSA screening, and the inference is annual. Only when you read the article do you see it nuanced and explained differently.
Plus, I have already seen many Tweets from individuals passing along the erroneous message that PSA screening is now recommended to start in a man’s 40s, again implying annual screening tests as opposed to a (perhaps) single baseline measurement.
The “baseline” nuance is just that, a nuance, and I fear it is being lost, or will be lost, on far too may members of the public.
My biggest concern is one I wrote about on these pages last year. In my essay Screening for Prostate Cancer- PSA Testing or Not?? I made a number of points that I believe bear repeating here.
First off, I am all for the idea of shared decision-making, but that only works if the conversation can be held in an objective and informed fashion.
PCC’s very own survey as reported in the press release stated that a whopping 87% of men fear prostate cancer. In that environment of fear, are we to believe that most 40 year-old men will just take an abnormal PSA reading in stride?
Of course, we cannot and must not equate a positive PSA test with “prostate cancer”. If that were the case, then we wouldn’t need these guidelines. The sad fact is that the PSA test is one of the poorer diagnostic tests we have today – it is inaccurate and is not very predictive. It may be the best we have in today’s arsenal for prostate cancer, but it isn’t very good, unfortunately.
But if so many men fear prostate cancer, what will they do when their baseline PSA number comes back high?
Last year I wrote:
But if we are to educate men at all, this dialogue MUST happen long before a blood sample is ever drawn. In my view, once there is a positive PSA test on the table, all bets are off – in effect the genie is already out of the bottle and it won’t easily get put back in.
Why? Again from my previous post:
Two simple words – “cancer” and “fear”. Despite the great strides we have made in treating and curing cancers, the very word “cancer” still conjures up in most people a fear like no other. The very thought, for most people, of knowing you have a cancer growing inside you does not allow you to ignore it on the grounds that it will do you no harm.
If a cardiologist tells you that have a mild heart murmur, you most likely will not quake in fear or demand a heart valve repair surgery. You will just learn to live with it and most likely will even ignore it totally as long as it remains asymptomatic.
But if an oncologist tells you that you have a cancer, your first thought is just as likely to be “Oh my God, I’m going to die” and the second thought that likely follows close on is apt to be “How do we get rid of it?” Ignoring it because it won’t do you harm is just not in most people’s psyche, even if it all evidence says that is what you ought to do…
In my view it is NOT PSA testing per se that is driving over-treatment of prostate cancer. It is FEAR that is driving the over-treatment. And unless physicians are better equipped than they appear to be in dealing with that fear, the nuance of what PCC is recommending my just get lost in a wash of: “we have to do something”.
If I didn’t know better, I might almost be convinced that the press release today and all of the nuanced language around the new recommendations was a way for Prostate Cancer Canada to appeal (at the beginning of Prostate Cancer Awareness Month no less) to their broad base of prostate cancer patients and survivors (for whom PCC is a fine advocacy and support organization) by appearing to advocate for more, not less, PSA testing, while not really flying in the face of where the rest of the world is trending.
To be fair, I don’t really believe that. I know many of the people at Prostate Cancer Canada personally, in some cases having even been their employer in the past. I do not question their integrity in the slightest.
But I can also believe that there is a lot of pressure from the grass roots, i.e., from the prostate cancer patient and survivor communities, on organizations like Prostate Cancer Canada to advocate for more PSA testing, even as the rest of the world starts to question that. After all, it seems to me that the staunchest supporters of PSA testing, by far, are the men themselves that have had a diagnosis of prostate cancer as a result of a PSA test. For them there is not a shred of doubt that the PSA test saved their lives, whether that is actually true or not.
Does this new recommendation hit the right mark? Time will tell, but I am concerned that it may just add more, not less, confusion as men younger and younger confront higher-than-normal PSA “baselines” and have no idea what to do next.