Overdiagnosis Conference, U of Sydney 5.12.19

Speech delivered at the 2019 International Conference on Overdiagnosis 5.12.19, at University of Sydney:

Medical Overdiagnosis, or Commercial Marketing?

Current technological improvements in scanning resolution, misuse of PSA tests and greed has led to massive overdiagnosis of prostate cancer, with the unrecorded suicides of men and destruction of many happy marriages.

So I can avoid the word “cancer” may I reference this disorder with the abbreviation PCa?

My name is Michael Shirley, 12 years ago, a Senior St Vincent’s urologist told me I would be dead – 9 years ago.

After a global biopsy his diagnosis was: “You have prostate cancer and you will be dead in 3 years if you do not immediately have a radical prostatectomy and I can fit you in next Thursday”. At that time I was 69, I had been having annual PSA and then Digital Rectal Exams by my GP for 3 prior years and then for another 2 years by the urologist. My PSA was 1.5, rising to 1.75 over 5 years. I had no other symptoms. The global biopsy and the pathology report said I had a small amount of Gleason 7 cancer. There is no doubt that this was correct diagnosis as the grading was supported first by Professor Ronnie Cohen, in Perth, and then by the Memorial Sloan Kettering Cancer Center, in New York.

Current “kneejerk” protocols that include radical prostatectomy breach the Hippocratic Oath of “First do no harm”. They fail to consider the current scientific research, the impact on quality of life of men, both physically and emotionally and leave them disempowered, disfigured and in disrepair.

It is shocking to realise that this spoken diagnosis “You have prostate cancer and you will be dead in 3 years if you do not immediately have a radical prostatectomy and I can fit you in next Thursday”. Are words used regularly by this urologist. He said this to my friend Andrew 14 years before (that is 24 years ago today) and another urologist (same hospital) used exactly the same words to another unsuspecting patient this year. That suggests to me that urologists have been scaring men using the same technique for at least 24 years! It cannot just be a series of coincidences. Is it medical malpractice? I suggest it has all the marks thereof.

You can see I was cynical about this diagnosis. Immediately before my diagnosis I had an old friend who introduced me to the fact that I had a prostate and his urologist wanted to take his out for a phenomenal amount of money. He complained that the Commonwealth rebate was a tiny percentage of the cost he had been quoted. Another friend warned me about the nasty side effects of a radical prostatectomy. My urologist told me nothing of the alternatives, I asked about erectile dysfunction? He gestured towards Oxford Street saying they inject in their penis and can have erections anytime they like. One second’s consideration of how unromantic that would be made me ask could I have a second opinion. He recommended his partner! I could not get out of there fast enough, and never went back.

The use of the word “cancer” stops even the most intelligent brain from working, the effect is devastating. “I am going to die”, is all you can think of. Constantly! Now the diagnosing doctor has you trapped. You have become detached from reality. There are alternatives, but he will not tell you of them. Finding the information yourself is nearly impossible. The information is available, but you cannot think of anything rational that would inform you. Men need to become aware of the facts before they enter such discussions with a specialist. I have often told my family that if you want the best outcome you must know as much as you can learn about your disorder so your medical discussion enables you to know what is going on.

Importantly, we must change the word “cancer” to something less terrifying. Low grade dysplasia is a well used term relative to other forms of early pre-cancer and describes PCa well. PCa does not behave like other cancers and may not grow for many years. It is well known that nearly all men die with PCa, few of it.

Fortunately, I read an opinion piece in the media quoting Professor Alexandra Barratt questioning medical practice and overdiagnosis. I thought if this expert is questioning medical advice I better think again. I went to a urologist at another hospital who calmed me down by telling me a little of my alternatives, I had time to research and properly consider the alternatives. He confirmed that penis injections worked and showed us (my long suffering wife joined me in these consultations) a huge penis photograph with hatched lines down each side that indicated areas into which you could inject. Somehow you were supposed to not use the same spot twice. It was all bizarre to us, but he reduced the brain panic substantially, for that I am grateful.

The urologists’ professional body: Prostate Cancer Foundation of Australia, claim they regularly issue research findings to their members including “1,000 men need to be scanned to save one life.” Which has been known for many years, but their members just ignore the findings, too much money is involved. There are three aspects of this evidence worthy of mention:

The urologists college circulated the research to their members years ago – almost all urologists chose to ignore it and do not tell their patients.
The 2004 edition of the British Journal of Urology published finding by Dr Thomas Stamey, Stanford University that the chance of dying from PCa was 2.5%.
Little research has been done into the destructive effect that prostate scanning has on the other 999 men (and importantly their partners’), suicide and cardiovascular death rates. Last year, a groundbreaking study was published in the New England Journal of Medicine showing that, based on data on more than 6 million Swedes aged 30 and older, the risk of suicide was found to be up to 6 times higher and the risk of heart-related death up to 3.7 times higher during the first week following a positive versus a negative cancer diagnosis. These deaths and ruined lives are not recorded in any of the prostate research I have read. I suggest the attempts to reduce deaths from PCa results in unrecorded deaths following diagnosis. Surely, radical prostatectomies must stop. At least the name of the disorder must be changed to Low Grade Dysplasia!

You cannot tell me these intelligent urologists do not know of the research that says what some of them are doing is wrong; surely this is medical malpractice? It is certainly not medical science, more like medical marketing.

What is concealed behind these statistics is the devastation caused to men (and their wives) with a cancer diagnosis, some commit suicide, others leave good marriages, one left a pregnant, brilliant wife in a happy marriage, others stop working, become depressed. Even those who decide to watch and wait are affected. Another, a dentist, who had a radical prostatectomy and was incontinent, wrote to me of the daily fear he lived with that his constantly leaking urine would offend his patients and end his professional career.

The latest research reveals that you have only a 7% chance of ever having an erection again. My urologist did not tell me any of this. Andrew says the 7% who claim they do not have ED are all lying!

(Display prosthesis picture)

Urologists have invented an insertable hydraulic erection device with a fluid tank, operated by a pump in your scrotum for US$50,000. No one says it works, but it is on offer to overcome erectile dysfunction. Bizarre! That you will not ejaculate means you just have a very expensive dildo.

I became focussed on (about 30) medical texts and journal articles on prostate cancer. To my surprise and delight I found many medical experts telling a more encouraging story about survival. I obsessed about the subject. My wife thought I was crazy. I made her life less enjoyable. All the time I kept thinking I am dying, make the most of everyday. It is a deeply disturbing, all encompassing obsession – I am dying. It is hard to get back to sleep when maudlin thoughts of imminent death occupy your brain. Why would you have a dental check-up? I am dying, teeth do not matter, so I missed many years of check-ups. I have a 14 year old car, why would you update it, I’ll be dead too soon to enjoy it!

One of these books was The Great Prostate Hoax, by Dr Richard Aibling, the scientist who discovered PSA. He wrote that he was devastated his discovery was being misused by urologists to remove prostates. He wrote that PSA did not indicate the presence of PCa, in fact could be considerably disturbed by riding a bike or having a sexual encounter – up to three days before a blood test. The FDA had not approved it for PCa diagnosis, it was being used “off-label”. He asked that PSA tests be stopped. A few years later a US Government Task Force report said just that, followed by the British authorities both of whom say stop PSA testing. Yet in Australia PSA tests continue to be recommended and are routinely sprung on men without their informed consent. PSA tests do not work and should be abandoned! They are wildly inaccurate and just create a state of unnecessary fright in men.

My friend Andrew has had a wildly fluctuating PSA over 24 years – last year about 170, now only 70 yet he is not dying of PCa.

(Display graph)

That I had PCa at 69 should not have been a surprise, please refer to Dr H Gilbert Welch’s book, Overdiagnosed. Two studies done in 1980s by a Cleveland Clinic and repeated in 1990s in Detroit, totalling 700 bodies (of men who had died of non-PCa causes) had PCa from their 20s right through to 80s. In fact you can draw a nearly straight line from 9% at age 25 years to 83% at age 80 years. This research has been replicated by others, I use this as it shows you what was known 25 to 30 years ago.

If you know this your view of a PCa diagnosis changes completely. If your urologist is fair he/she will say you have PCa, but you might have had it since you were a young man so perhaps do little; eat a plant based diet; live well; exercise; use supplements to boost your immune system. Let’s look at it again in 6 months. This has complementary useful effects as you probably become the healthiest you have ever been!

I often worked in NYC and fortunately learned of Dr Robert Bard, radiologist, a few blocks from my hotel. He scanned my prostate by Doppler ultrasound and sent me round the corner for a DCE-MRI. I was told all the cancer discovered by biopsy was inactive, but a small focus that had not been detected by biopsy, was still active. I was advised to continue my immune system boosting supplement program, and to continue to monitor the gland. Dr Sean O’Connor, radiologist, Sunshine Coast, was later trained by Dr Bard and has the same scanning equipment. So this scanning is available in Australia. I have repeated these scans a number of times since. By repeating these two scans both examined by the same experts, I was able to learn that yes I had PCa, but it was not growing and did not require further treatment.

Active Surveillance usually includes annual global biopsies. These can be inaccurate, expensive, hurt, inflame the gland increasing the chance of cancer spreading, probably severs some penile nerves and the anaesthetic damages the brain. Look at my experience: Dr Bard said my biopsies had missed the slightly active cancer, but Doppler ultrasound found it, without any of the negative aspects of a biopsy.

Research shows that a radical prostatectomy does not have a better outcome than no surgery for men at low to medium risk. I noticed men who had suffered the procedure were convinced it had saved their lives. I think this is understandable confirmation bias: the procedure is so unpleasant, has such devastating consequences, and is so expensive that men convince themselves it must have been worthwhile.

Patients need to learn all they can about their disorder before consulting a surgeon; otherwise the expertise of the surgeon will determine the outcome of their consultation.

Men need to be brave, be critical thinkers and use the rapidly improving scanners to “read” their prostates over some months to see what is happening, if anything. Suspect you have PCa, have a Doppler ultrasound, a DCE-MRI, wait a period, have the same technicians repeat the same ultrasound/MRI and report on any change. It might be an indolent low grade dysplasia and best left alone.

I chose to have 6 monthly Doppler Ultrasound and DCE-MRI scans to actively monitor what was happening, initially, in NYC, then later by Dr Sean O’Connor, Sunshine Coast. The earlier advice from a leading Sydney urologist who claimed that ultrasound could not be used to detect PCa was misleading, as seven years ago he began using US to detect PCa for the purpose of his so called “Nano Knife” therapy. Cynicism says money was the motivator for that earlier advice.

A major 2004 Stanford University study by Dr David Stamey discovered 98% of prostates removed over the previous 5 years should not have been removed, yet urologists are still doing this procedure. It shows how little urologists wish to perform evidence-based medicine.

NEJM study, 13/7/17, that shows almost all men with early PCa survive 10 years, regardless of treatment. There is no difference between aggressive treatment and none at all for those at low risk. Though for those at high risk of death treatment did help.

21/11/16, Clinical Associate Professor Ian Haines, Alfred Medical Research and Education Precinct’s Department of Medicine at Monash University and Cabrini Health, Melbourne wrote that PCa management in Australia was a scandal.

American, Dr Snuffy Myers was invited to speak at the Garvan Institute, his speech was professionally videotaped. I bought the DVD and was shocked that his final 10 minute summary of what men should do, which omitted any reference to surgery, was missing from the DVD. The producer claimed there was no room to include this on the DVD. That was a lie. The urologists did not want this advice to become public – fake news!

Despite all this work little has been achieved. One urologist boasts having removed the prostates of 6,500 men. The money involved is staggering, the pain and suffering is eye watering. This conference has the potential to save a large cohort of men from over diagnosis and over treatment – I commend it to you.

Now nearing 81 my PCa is still inactive. The constant worry of: have I made the right decision, is always with me? If I find that the PCa (which at my age I undoubtedly have) has become active I will be off to the Peter MacCallum Cancer Centre in Melbourne who is trialling a new therapy using radio isotopes to kill the cancer cells

It would be easy to be angry about how this diagnosis has upset my life, I prefer not to get angry, but get even, by informing as many men as possible to learn about their glands and the considerable research that will help them cope with this slow growing dysplasia. Andrew and I set up a website to better inform men as their prostates are the last thing they think of until their GP springs a PSA test on them. It has had 2.7million hits. Direct communication with men is essential, informing surgeons, or their colleges might seem enough, but many surgeons ignore their college’s advice. An example of men’s ignorance is a recent group PCa meeting at University of Sydney, at which all men were asked why they had come, all said their wives had sent them!

The work of your organisation is groundbreaking and stands to change the lives of hundreds, perhaps thousands of men and importantly also their wives. I salute your work and encourage you to work harder to reach uninformed Australian men and their partners.

I count myself fortunate to have had the cynicism to question, the tenacity to research, and the luck to survive the depression of my diagnosis. I feel passionate about sharing my story in the hope that other men, faced with such a diagnosis, will have access to more information to empower them to make a considered and informed decision about the treatment options available to them.

In the meantime I enjoy my huge family, including 14 grandchildren, laugh as much as possible, avoid the world’s horror stories and continue to consume hundreds of supplements each week, washed down with generous quantities of red wine.

REFERENCES

All the above facts have been known since 2009; PSA is not useful; prostatectomies are unnecessary; the word “cancer” should not be used;

https://www.nejm.org/toc/nejm/381/12

Overdiagnosed, Gilbert Welch: The journal of Clinical Investigation – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3148742/

The era of PSA is over!

https://www.ncbi.nlm.nih.gov/pubmed/15371827

Death rate from PCa in Australia is 2.5% –

https://prostate-cancer.canceraustralia.gov.au/statistics

Suicide and cardiovascular death rate following a diagnosis of cancer:

https://pubmed.ncbi.nlm.nih.gov/20016838-immediate-risk-for-cardiovascular-events-and-suicide-following-a-prostate-cancer-diagnosis-prospective-cohort-study/?from_single_result=plos+medicine+prostate+cancer+diagnosis+suicide

Professor Ian Haines – The scandal of prostate cancer management in Australia

https://insightplus.mja.com.au/2016/45/the-scandal-of-prostate-cancer-management-in-australia/