In 2014, the Canadian Task Force on Preventive Health Care (of which I was a member) published its recommendations against screening for prostate cancer, saying that there was inconsistent evidence for a small benefit, but clear evidence that many men would be harmed by the follow-up of a false positive test.
Prostate Cancer Canada, an organization that advocates for screening and care of men with prostate cancer, responded vigorously to the recommendations, asserting that, “Quite simply, these guidelines do not only a great disservice but also a great injustice to men and their loved ones.” PCC recommends that men be screened from the age of 40 or even earlier. They use gimmicks such the Famous Fingers campaign, Movember, “Wear Plaid for Dad,” and Prostate Cancer Awareness Month, coming in September, to encourage fundraising and keep prostate screening in the public eye.
These efforts have wide reach. Articles in print and TV interviews feature prominent men who have had the test, followed by surgery or other treatments, and believe they have been cured. These include former B.C. judge and politician Wally Oppal, wrestler Bret Hart, former Dragons Den star Brett Wilson, and CFLer Damon Allen. Prostate Cancer Canada asserts that one in seven Canadian men will be diagnosed with prostate cancer, not mentioning that if men are not screened, the diagnosis rate is less than half that. Interviews with urologists depict them as skilled surgeons saving men’s lives, and downplay the risk that no matter how good the surgeon, men may develop post-operative complications and even die. They discuss loss of sexual function and incontinence, but minimize these. They avoid mentioning the high proportion of men whose cancer recurs despite treatment. They do not warn that most of the men who would have died from disseminated prostate cancer without screening still die, since the effectiveness of screening is small.
The PCC has offered misleading assertions such as, “With early detection, survival is close to 100 percent.” Yes, because most of these men have a cancer that would never kill them, nor even be diagnosed if they were not tested. Or, “It’s a simple blood test.” It is, but given its inaccuracy, many men then go through a diagnostic and treatment process that is anything but simple. The first step is multiple-needle biopsies that take samples from their prostate (which entails risk of infection). Biopsies must be interpreted by a pathologist, a difficult and often uncertain process for early disease. Imaging measures the extent of disease. Then men have to choose between treatment options. These include close observation with repeat testing to see if the disease is progressing, major surgery, radiotherapy by implants or external beam, and chemotherapy of various types.
Stuart Edmonds, vice-president of research, health promotion and survivorship at PCC, says that because men with low-risk cancer are now not initially treated but undergo regular surveillance, the harm is much reduced. But it appears that within a few years of being diagnosed with low-risk prostate cancer, many men or their physicians become anxious about regular repeat testing and opt for surgery. Once men have had the initial positive test, they are on a roller coaster, out of control, with no way to get off.
Edmonds also says that by screening and treating early, the health care system would spend less money treating men with advanced cancers. This is possible, but with the PSA screening approach, the system spends much more treating men with cancers that would never advance at all if left alone. And they spend money on care for long-term complications and side effects, since these treatments cause incontinence of urine in some and impotence in many. Radiotherapy can cause severe malaise for a long period, rectal inflammation with bloody diarrhea, and in the long term, tissue fibrosis. Hormone-deprivation therapy causes men to have menopause-like symptoms, while chemotherapy may cause nausea, vomiting, and infection.
The Canadian Urology Association recommends screening for men age 45 to 69. However, it recognizes the fine balance between small benefits and substantial harms, and it recommends that men make a fully informed decision before screening, but neither they nor PCC has specified their estimate of the probability of benefit and how to balance this benefit against the possibility for harm.
The Canadian Task Force has made these calculations, and summarizes them in the form of decision aids. The pro-screening organizations disagree with the Task Force but conspicuously avoid justifying their position by not providing their interpretation of the research on the outcomes of screening. While they suggest that men should talk to their doctors, neither Prostate Cancer Canada nor the Canadian Urology Association provides any decision aids for doctors to help men fully understand their choices. Given the massive difference in invasive cancer rates between men in their 40s and those in their 60s, probability figures need to be presented for each age group. Since PCC advises that high-risk men (those with family history of prostate cancer and Black men) should be screened even earlier, they should also provide evidence as to how they estimate the outcome for these groups.
It is time for the leaders of Prostate Cancer Canada and the Canadian Urology Association to put up or shut up: Tell us what they think the outcomes are when men are screened. What proportion of men in each age group will be found positive, will be advised to have further investigation including prostate biopsy, and will proceed to operations or other treatments? What proportion will have complications, how many will have their lives saved, and how many will still die of metastatic prostate cancer? Men deserve that information. Otherwise, having the test and following its consequences is like buying an old car from an advertisement without inspection or road report, and not even knowing the price until after taking delivery.
And while they are at it, perhaps Prostate Cancer Canada will also inform us how much funding they get from companies that profit by selling tests, medical devices for use in operations, drugs for treatment of this disease, and diapers to collect incontinent urine. Their meetings and annual reports feature the logos of these beneficent companies, but not how much they contribute, whether directly or indirectly. The public should know how the money from these donors has been leveraged, and the people who fundraise for PCC should know how much their contributions assist the marketing and profits of those companies.
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I was greatly harmed by the Prostate Specific Antigen Screening as part of my annual physical when I turned 50 years old in 2013. My primary doctor did not discuss with me about risks and benefits of the PSA screening, and I had to pay $30 at Life Lab. The PSA came back elevated (above 3.5 ng/mL), and I was immediately referred to an urologist who was young and impatient with little medical knowledge. He pushed me through needle biopsy, CT Scan, and MRI. He somehow arrived at the conclusion that I had End Stage 4 Prostate Cancer with metastatsis in bones and distant organs with only 6 months to live. He decided to conduct Radical Prostatomy on me immediately. I asked him if I could seek a second medical opinion because if I would be dead within 6 month because of metastasis, then why I felt so normal – no bone pains, no blood in my urine or semen, no symptoms whatsoever. His response was that there were no symptoms in patients who had End Stage 4 Prostate Cancer, and he flatly refused to allow me a second medical opinion and insisted on me to go through the Radical Prostatomy within 10 days.
The long term side effects of the Radical Prostatomy were immense – urinary incontinence, impotence, and infertility. My life has completely been ruined: Life has no meaning at all after the surgery. Yes, I would rather die of the prostate cancer than living hellish life! All thanks to the PSA Screening and my own stupidity of believing in the uologist’s diagnosis (how could a localized treatment such as radical prostatomy be curative of metastasized prostate cancer. They were all lies!)
Speaking from my own experience with PSA Screening, which was not my intention to get screened. My primary physician just included the screening on my first annual physical when I turned 50 in 2013. My unfortunate encounter with the PSA Screening propelled me into a life of living hell, depression, and numerous suicide attempts. You see, the screening led to a referral with a urologist who immediately recommended me to undergo a needled biopsy, bone scan, and ultimately the deadly radical prostatomy which was pushed onto me so quickly that I had no time to consider if it was the right treatment for me. My urologist also lied to me that I had End Stage 4 Prostate Cancer with metasisis in my bones and distant organs even when I insisted that I was asymptomatic, and needed a second opinion. His responses were that I did not have to exhibit symptoms to have End Stage 4 Prostate Cancer, I had no time to waste on a second opinion because I would be dead within 6 months without the surgery, which was the only treatment option available. I was so scared by his diagnosis, and immediately signed the consent forms for the Radical Prostatomy – this surgery is, by any means, a death sentence! And what made my case atypical is because my urologist had lied to me about my diagnosis,and that is the most scaring part.
The PSA test remains our most important tool in diagnosing prostate cancer, and we support screening men who are properly informed. Through individualized and shared decision-making, we have lessened the chance of unnecessary treatment. We are proud to set the standard for supportive care before and after treatment, and we are also leveraging PSA screening to empower men to be more active in their health care.
While some prostate cancers grow rapidly and metastasize or spread, others grow very slowly and are unlikely to metastasize. This low risk prostate cancer may not need to be treated as soon as they are diagnosed. Slow growing prostate cancer may not have time to cause significant problems and the complications and side effects of treatment may outweigh the advantages. In Calgary’s Prostate Cancer Centre’s active surveillance clinic, men are carefully monitored. Treatment can be given if the cancer is progressing or if the patient decides on further treatment. Over treatment of men with low grade cancer is not an issue in Calgary.
We would welcome anyone to come to Calgary’s Prostate Cancer Centre and talk to any one of our Urologists, staff, or patients working in the field of prostate cancer to see the world-class clinical work that is being provided to our patients and their families.
Kevin V Carlson MD FRCSC DABU
Clinical Associate Professor and Section Head of Urology
Department of Surgery Cumming School of Medicine
University of Calgary
Eric Hyndman, MD, PhD
Urologist, Clinical Assistant Professor University of Calgary, Southern Alberta Institute of Urology
Bryan Donnelly, MD, MSc, FRCSC
Urologist, Clinical Associate Professor University of Calgary, Co-Founder of Calgary’s Prostate Cancer Centre
Dr. Geoffrey Gotto, MD, MPH, FRCSC
Department of Surgery, The University of Calgary
Southern Alberta Institute of Urology
Dear Ms. Heard, and Drs. Donnelly, Carlson, Hyndman, Donnelly and Gotto,
Thank you for your response. My article was aimed to challenge the policies of the national organisations, not at activities in Calgary specifically. However, I will happily take you up on this invitation. When I visit, I would really like to learn how you properly inform men before they choose screening, and the way that you undertake “informed decision-making”. I would love to see your data that demonstrates the quality of your care, and how much you reduce overdiagnosis and overtreatment. Even better if you can publically describe it so all may know how good your centre is.
Thanks so much for your response. We are actually trying to set up a symposium in September to address the issue of informed PSA testing, harm from needless biopsies, and our Active Survellience Program (we are a world site) . We think it would be a great idea to have you and anyone else you wish to have on the panel, along with a few of our Calgary urologists to discuss these issues. There would be a full media scrum and Raj (CBC doctor) has agreed to host. Please feel free to contact me by email with some possible dates.
Regards
Pam
Dear Ms. Heard,
This symposium sounds interesting. However, for the national audience, perhaps you can share links to your evidence and materials so that all can think about your assessment of the benefits and risks, as requested in my opinion piece above. After all this is a complex set of issues, and such matters are best worked through with slow thought and reflection, not the cut and thrust of verbal debate, nor the “sound bites” of a media scrum.
Thank you for your enlightening comments. Rarely are we privy to information questioning these practices. I am presently undergoing breast cancer treatment and am relieved that I do not need to be questioning these issues.
Some may find this recent article in BMJ of interest relating to this topic.
“Renaming low risk conditions labelled as cancer”
https://www.bmj.com/content/362/bmj.k3322 (BMJ 2018;362:k3322)
Excellent article. Well argued. It seems to me that an evidence based approach to screening comes a poor second to a public health approach based on ’emotional appeal’, and that questioning the health economics and efficacy of such screening is seen as bordering on the socially unacceptable. This is one reason why politicians (at least in the UK where I live) are reluctant to get into that debate.
This is very timely. As a family doctor, the controversy around PSA screening is definitely something I come across very frequently. Just the other day I had a very heartfelt conversation with a patient who had a PSA-detected prostate cancer and was agonizing over whether to go ahead with surgical treatment or not.
One thing that I think would really help, regardless of what one thinks about PSA testing, is a more straightforward way to discuss possible outcomes with patients. I like the “Best case/worst case” strategy and I think it’s very applicable here — more info at https://www.youtube.com/watch?v=FnS3K44sbu0
Hi Ed. Thanks for the youtube link. Really excellent. i am embarrassed to say I haven’t seen this before. Really, really useful.
Well Said!
This is a good article. If surgeons were honest about this topic they wouldn’t make the money they make doing surgery. Equally significant, the medical students they “teach” and those specializing in urology “wouldn’t get the experience” they need to prepare them for the work they anticipate doing if they had fewer patients designated for all the “testing” and surgical procedures” patients endure.
i) PSA screening remains a difficult issue, a controversy that has survived the publication of the big trials we thought would put this issue to bed.
ii) Many guideline groups though, including arguably the CTF, though, don’t give due weight to mens’ preferences. It is about the frequency of events conditional on screening. But it’s also about the meaning of those events, the value or weight that men, and their loved ones, ascribe to labelling, reassurance, PSA anxiety, impotence, incontinence etc. Most guidelines make some effort to count things. Few make a serious effort to review the literature on mens’ values, preferences, experiences for those things. I think it’s really important for guideline developers to treat the evidence in this domain as evidence, and make a good faith effort to find and synthesize these data
iii) There are a lot of modeling efforts too, which are typically not included in clinical practice guidelines. Many show that there is likely to be a small to very small mortality benefit that must be set against the potential positive and negative health related quality of life events associated with screening. If one is to be serious about the counting thing, I would urge the CTF to start using the best methods of counting- decision- and health economic modeling.
http://www.cmaj.ca/content/early/2014/10/27/cmaj.141252
Dear Murray, Thank you for your comments.
You are right that ultimately the preferences of men are most important in deciding what to do. But preferences based on biased or incomplete knowledge are built on quicksand: they are like the poor republican voters who oppose Obamacare because it is a socialist plot. So synthesising data on preferences based on what men have been told by the prostate screening advocates is useless.
Too many opinions are based on the “survivors” who have done well. They were diagnosed and treated, and now have no sign of cancer. So they believe they were saved by the treatment – neglecting that most of them were overdiagnosed and would have done well regardless. To be “cured” of a disease that would not kill until the age of 120 is not a great victory. We hear little from those whose lives have been made a misery by the process. Yet their stories matter too. Even more those who have been treated, were caused harms immediately, but still die of the disease in the end.
Only when we can tell men honestly what the “conditional probabilities” really are, can we have valid preferences. And the modelling you describe merely erects an even shakier superstructure on those wobbly foundations.
It has been argued that the Canadian Task Force used old and out of date evidence, but perforce it had to use what is available at the time. The urologists and advocates who say “things are better now”, could analyse the latest data from Canadian sources that they control and can perhaps provide better information to assist men to choose. Until they do, men must either follow the Task Force or other decision aids, or choose based on hopes and beliefs rather than facts: a poor basis for decisions.
Hopes and beliefs are important as well though as they make us who we are in large part and not simply facts regardless of how “evidence based” they are. Decision making is a multi-factorial process.
Excellent read! Alerts men to what may be going on behind the scenes with this issue. Clearly as you say, harms that may happen with false-positives is an issue that does need to be specifically and clearly accounted for. First do no harm as the saying goes. This reminds me of something close to my personal situation now, a diagnosis of “conversion disorder” and as this peer-reviewed article mentions, harms can happen from such a diagnosis as this — “Such interference is an important problem, if the diagnosis is accurate. But, in the (more likely) event that it is not accurate, this defensiveness can interfere with both important mental health care and further ongoing necessary medical care.” In: “Problems with diagnosing Conversion Disorder in response to variable and unusual symptoms” – Barnum R. Adolesc Health Med Ther. 2014 Apr 17;5:67-71. doi: 10.2147/AHMT.S57486. eCollection 2014. PubMed PMID: 24808723; PubMed Central PMCID: PMC4000178 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4000178/