“We do ourselves a disservice when diagnoses as wildly different as a grade 4 glioblastoma multiforme (a brain tumour that is virtually 100% fatal) and prostatic intraepithelial neoplasia (a prostate condition more likely to make you pee frequently than to kill you) are both described as cancer.”
So claims a thoughtful Globe and Mail reflection called Can the Word ‘Cancer’ Be More Harmful Than the Disease? by health columnist André Picard. It’s all about the power of words – and particularly the C-word.
We know that not all tumours in the body are cancerous, Picard reminds us. Tumours can be malignant (spreading to other parts of the body) or benign (they do not spread). Some cancers, like leukemia, do not even form tumours at all.
“We can now detect tumours at a microscopic level and abnormalities right down to a cellular level – and we can do this in living people. For the longest time, cancer was studied only in corpses, reinforcing cancer’s deadly reputation.
“The paradox is that we can now detect a lot of cancer that is not even cancer yet, and likely never will be.
“Should we be telling folks with abnormalities or weird-looking cells that they have cancer?”
That’s also the “bombshell” dropped at a recent National Institutes of Health Consensus Development Panel meeting, as described by Reporting On Health’s Laura Newman. Members of the Panel on active surveillance for prostate cancer made a sweeping recommendation about when doctors should actually say the C-word out loud to their prostate patients.
The panel members insist that “terminology matters”, and that men who have prostate-specific antigen (PSA) screening results that read 10 ngs or less with a Gleason Score of 6 or less should no longer be told that they have prostate “cancer.”
According to the National Cancer Institute, most doctors in the past considered a PSA level below 4.0 ng/mL as normal. But in a number of studies, PSA measurements above 2.5-3.0 ng have been considered “elevated”. These lower cutoff levels may increase the chance of detecting prostate cancer, but the reality is that this method also increases overdiagnosis and false-positive test results, leading to unnecessary and debilitating medical procedures.
The PSA screening test itself has become controversial. (See Health Canada’s infographic above). For example, two large, randomized clinical trials in 2009 studied the relationship between PSA-based screening and prostate cancer mortality:
- The European Randomized Study of Screening for Prostate Cancer
- The Prostate, Lung, Colorectal, and Ovarian Cancer Screening Trial (U.S.A.)
According to the European study, which involved over 162,000 men between the ages of 50 and 74 in seven countries, PSA-based screening reduced the already low rate of death from prostate cancer, but was also associated with a high risk of overdiagnosis and overtreatment leading to devastating quality-of-life consequences like incontinence and impotence – often permanent.
Meanwhile, the American PLCO study found the rate of death from prostate cancer was very low for both the 38,343 men in the group that received annual PSA-based screening and the 38,350 men in the control group who received “usual care.” The conclusion:
“Screening was associated with no reduction in prostate cancer mortality.”
In fact, as Dr. Richard J. Ablin, the inventor of the PSA test, wrote in the New York Times:
“Men lucky enough to reach old age are much more likely to die with prostate cancer than to die because of it.”
A December 2011 editorial in the British Journal of Urology International also stated:
“There is no doubt that prostate cancer kills, but only a minority of men who are given this diagnosis, die from prostate cancer. In the developed world, we are now over-diagnosing and, more importantly, overtreating prostate cancer, a fact for which we will be criticized in generations to come.”
According to veteran urologist Dr. Anthony Horan, author of The Big Scare: The Business of Prostate Cancer, 94% of the cancers detected with the routine PSA blood test would not cause death before the age of 85.
“More men die in car accidents than of prostate cancer each year.”
The medical profession is already familiar with the accepted practice of renaming certain cancer diagnoses, based on evolving scientific knowledge.
For example, consider the Globe and Mail’s update on the changing distinctions for these forms of skin, breast, cervical and thyroid “cancers.”
- The Canadian Cancer Society does not count the 74,100 non-melanoma skin cancers in its annual tally of cancer diagnoses in Canada because these are considered just “localized abnormalities”.
- Ductal Carcinoma In Situ (DCIS), also known as Stage Zero breast cancer, is an accumulation of abnormal-looking cells in the milk ducts of the breast, accounting for one in five cases of breast cancer. But is it actually cancer at all? While DCIS can spread from the milk ducts to elsewhere, there is no good science showing that treating it before it spreads is beneficial, and the U.S. National Institutes of Health have concluded that DCIS is not a carcinoma, so it should be renamed “high-grade dysplasia.”
- Cervical carcinoma in situ has already been renamed cervical intraepithelial neoplasia – not a form of cancer. Women understand that an abnormal Pap test does not automatically mean they have cancer; they already make the distinction between dysplasia and cancer.
- The fastest-growing cancer here in Canada is thyroid cancer. But, again, is that misleading? As with DCIS, we now have technology that can detect nodules on the thyroid. But the vast majority are benign – and they will have no negative health consequence, unless you start cutting them out.
Finally, as the Globe and Mail‘s André Picard sums up the power of words:
“When you use the dreaded C-word, the reaction of patients is to want to rid their body of a deadly passenger. They want to cut it out – whether it’s in a breast, a prostate or a thyroid. But cutting and burning and poisoning – surgery, radiation and chemotherapy if you prefer the more technical terms – are not always the best response to weird-looking cells.
“Watchful waiting is becoming an increasingly common practice, particularly with prostate cancer, where the screening test (PSA or prostate specific antigen) is notoriously poor and tumour growth often very slow.”
- The Business of Prostate Cancer: Putting Profit Before Patients
- Bayer Sued for False Prostate Cancer Prevention Claims in its Multi-Vitamins
- Are You Being “Over-Diagnosed”?
- How to Translate Big Pharma’s PR-Speak into English
- New York Times op ed piece by Dr. Richard J. Ablin, the inventor of the PSA test: PSA Prostate Screening Is Inaccurate and a Waste of Money
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About breast cancer, it is not only a Ductal Carcinoma In Situ issue. There is now abundant compelling literature on the topic.
There seems to be minimal (according to screenerists) up to 20% or even up to 50% (according to nayscreenerists) overdiagnoses (and useless terrifying undeserved and apparently successful treatments for mammogram screening diagnosed breast cancers). This is counterintuitive but looks true to me.
Unfortunately it leaves women in a cruel situation of uncertainty about what to do. I will probably hear a few “my life was saved by screening” replies, anecdotes that bear little meaning, scientifically speaking.
My wife keeps on doing her mammograms, and I don’t think it is right. Fortunately we live in a country where radiologists are less likely to fear litigation and to cover their you know what, which likely increases overdiagnosis.
But maybe you talked about this ethical topic earlier, I’ll go have a look.
Thanks for your perspective, Pedrinha. Several years ago, I was one of those women who underwent ‘useless terrifying undeserved’ treatment (an invasive and disfiguring surgical procedure called a quadrant resection for what turned out to be a harmless benign breast mass) based entirely on misleading mammography results. We often hear the ‘screening saved my life’ anecdotes – but rarely those stories like mine.
A diagram such as the one at the top of this paper would be very telling if you did it based on Gøtzsche and Zahl’s papers*, on screening mammograms.
* Journal of the National Cancer Institute: “. . .screening mammography did not reduce breast cancer mortality.”
Screening tests can do considerable harm but this is never really made clear to the public. The over diagnosed person is so relieved not to have what they never had (cancer) that they question no further.
PSA screening is now rightly discredited and screening (as against diagnostic) mammography will hopefully not be far behind. Doctors but also cancer councils and patient advocacy groups all have been culpable in this.
Great post Carolyn 🙂
“… the over diagnosed person is so relieved not to have what they never had (cancer) that they question no further…” This is precisely how I felt too after undergoing my own disfiguring breast surgery – for nothing. Thanks for your comment, Dr. Joe.
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In those 5 men where prostate cancer is suggested but none is found, do you mean that none is found at the needle biopsy? Or that none is found after surgery? That’s a HUGE difference! Saying “none is found after radiation” is, of course, meaningless.
If your dad (especially before age 67 or so) or brother had/has prostate cancer (PCA), you need early screening around age 30. We need PSA stratified by age ranges; earlier screening will catch the fast growing cancer. The PSA doubling time is key. Even though I was supposedly gleason 3+3, the fast doubling time of 6 months shows it was dangerous. The free PSA helps when PSA is over about 4.0. My PSA at 43 was 3.5, and my free PSA was just 12% (suspiciously low). I read that average 40 year-olds have PSA around 0.7; but the test results show a “don’t worry” range to 3.5 based on 80-year-olds. I have seen men in their early 50s die from PCA. Low Testosterone (in my case) was caused by the PCA; pre-surgery it was 210, after 415.
Sadly, my PSA is back after 2.5 years, but I have kept it stable for 6 mo with B-DIM (BioResponse brand DIM, a broccoli chemical). To avoid nausea or heartburn, I have to take it after eating a few bites, then continue eating immediately. Started with 1 150mg, now 3 per day. I had Stable PSA at the low dose, (improved from doubling every 6 months!).