MANY Australian men are not having their options for treatment of early prostate cancer properly explained. It is a scandal.

It is now time to take the decision out of the hands of one specialty and mandate for multidisciplinary assessment of all men with prostate cancer. And despite the annual exhortations of Blue September and Movember, it is also now time for informed consent for all men contemplating having a prostate specific antigen (PSA) screening test.

I have become increasingly horrified at how many of the men coming to me for self-generated second opinions for early-stage prostate cancer have not had their options properly outlined. Many of these men, previously well and asymptomatic, have their diagnoses generated by “elevated” PSA screening tests that have not been properly explained to them by their family doctor. Some are well into their seventies (which is outside any evidence base for doing them) and are immediately referred to a urologist, who does a biopsy. When this shows “cancer”, the patient and their family are terrified. They are frequently told by some urologists that they need immediate treatment and, invariably, this is robotic surgery. This is not supported at all by recent and groundbreaking research.

First, the long-anticipated ProtecT study was recently published in the leading NEJM, and the results showed no overall or prostate-specific cancer survival advantage for surgery or radiation at 10 years over “active surveillance”.

The truly staggering result was that only 17 of the 1643 men (1%) participating in the study died of prostate cancer in the first 10 years, and there was no difference between treatments and all previously identified “prognostic” subgroups.

None.

That is not what the patients I see are being told. They say to me that they have been told that they need immediate treatment or they will die.

Metastatic events were higher in the active surveillance group (6.3 per 1000 person-years) than in the surgery or radiation groups (2.4 and 3.0 per 1000 person-years, respectively; P = 0.004), and the rate of disease progression among men assigned to prostatectomy or radiotherapy was less than half the rate among men assigned to active monitoring (P < 0.001), but it is not known if this would eventually influence overall survival comparisons. However, it does mean that we have to treat 27 men with surgery and 33 men with radiation, with all their associated toxicities, in order to prevent one man from developing metastatic disease in the first 10 years, with no significantly increased chance of survival.

As the men in this study came via a PSA screening study, it also tells us that for every 10 000 men who don’t get screened with a PSA test, three will eventually die of prostate cancer, usually well into their eighties, and seven and a half will develop metastatic disease.

According to Cancer Council Victoria, the median age at death from prostate cancer in Victoria in 2015 was 82 years (personal email).

the 710 prostate cancer deaths in Victoria 2015. Median age at death = 82 years (10% < 67 years, 10% > 91 years)

Source: Cancer Council Victoria

That is very different to what men are currently being told, and gives us a better way to present the information to men so that they can properly assess whether this very low risk for progression, metastasis and death is worth going through the physical and psychological trauma of screening, biopsies and treatment.

Second, men are not told about a new Australian radiation oncology study, the results of which show that prostate cancer patients are more likely to regret choosing surgery than having radiation therapy. The study’s results are particularly important given the fact that both radiation therapy and surgery deliver equal results, yet radiation therapy (often a more cost-effective option) is underused in prostate cancer treatment.

The results of the study were presented by lead researcher Associate Professor Thomas Shakespeare at the recent 67th Annual Scientific Meeting of the Royal Australian and New Zealand College of Radiologists (RANZCR) on the Gold Coast.

The study was conducted across a number of NSW-based cancer institutions and hospitals and surveyed patients who had undergone prostate surgery, but then required post-operative radiation therapy in order to cure the patients. It reviewed their long term results (more than 5 years following radiation therapy) and assessed whether patients regretted their treatment.

The results showed that patients rarely regretted undergoing radiation therapy (4.2%), compared to over one in six (16.9%) who regretted receiving surgery (radical prostatectomy).

This result contradicts the common misconception of surgeons that side effects associated with radiation therapy are not worth the risk to the patient. In fact, it was the side effects associated with surgery that caused the most regret.

This is certainly true of a previously fit and asymptomatic patient I know who was devastated enough by the impotence caused by his robotic prostatectomy for low-grade early prostate cancer, but had no idea that he might still be incontinent of urine at 6 months and requiring pads. He now feels self-conscious and humiliated.

Robot-assisted prostatectomy has been used over the past 16 years and is now used for 60% of prostatectomies.

Associate Professor Shakespeare says: “The key to reducing decision regret is allowing patients to make the most informed choice possible. The results of our study showed that many patients who regretted surgery did so because the patient did not receive enough information about radiation therapy as an equal alternative to surgery and were not referred for a radiation oncology opinion. Patients also commonly regretted surgery due to side effects, as well as surgery not getting all the cancer out. Some patients also regretted having surgery due to the cost of the operation.

“What many people don’t realise is that radiation therapy and surgery deliver equivalent results for patients. There is even a lack of awareness within the wider health care professional community. Radiation therapy can often be given at a fraction of the cost of surgery, and in public hospitals, patients receive radiation therapy at no out-of-pocket cost at all.”

“We advocate that all patients diagnosed with localised prostate cancer be referred to a radiation oncologist by either their general practitioner or urologist surgeons.”

Third, patients are not told about recent research, particularly a recent world-first Australian study from the University of Queensland published in The Lancet that has questioned the relative benefits of the very expensive robotic keyhole surgery for prostate cancer, which often involves out-of-pocket expenses of many thousands of dollars in Australia.

The research found that robotic surgery was no more effective than open surgery for urinary control, erectile function and cancer outcomes. No benefits, but vast extra expense.

The trial of robotic and open prostatectomy at the Royal Brisbane and Women’s Hospital examined outcomes for more than 300 Australian men for the 12 weeks after their surgery.

The lead author, Professor Frank Gardiner said: “Many clinicians claim that the benefits of robotic technology lead to improved quality of life and oncological outcomes, but our randomised clinical trial has found no statistical difference between the two groups at 12 weeks’ follow-up.”

There was no difference between the groups in urinary and sexual function, and both required the same time in days away from work. There was no significant difference in the number of post-operative complications from the two types of surgery.

Professor Gardiner, a consultant urologist at the Royal Brisbane and Women’s Hospital, said that the study team was now following up the patients to see if there were differences in quality of life and cancer outcomes 2 years after surgery.

“In the interim, we encourage patients to consider all their treatment options and choose an experienced surgeon rather than choose a specific surgical approach.”

This lack of information currently provided by Australian doctors on this major health problem that affects each and every Australian man and their families has become a scandal.

Clinical Associate Professor Ian Haines is a medical oncologist with the Alfred Medical Research and Education Precinct’s Department of Medicine at Monash University and Cabrini Health, in Melbourne.

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Too many man with early-stage prostate cancer are being overtreated and underinformed
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18 thoughts on “The scandal of prostate cancer management in Australia

  1. Anonymous says:

    My brother in UK (in 2005) age 59 saw a prostate Physician and was offered choices based on evidence. He accepted localised gold bead therapy on the NHS for his middle grade biopsy result as an alternative to surgery, He has been fine since, with few post op problems and no impotence
    In Australia he would only have been offered surgery it seems.
    The robotic cost and surgical dominance is a scandal
    V Good article

  2. Shomik Sengupta says:

    Official response from The Urological Society of Australia and New Zealand (USANZ) by A Prof Shomik Sengupta (Leader of GU Oncology advisory group) and Prof Mark Frydenberg (President)

    USANZ notes with concern the use of emotive language and anecdotal evidence in this article by Dr Haines in MJA Insight, and hopes that it will not lead to men missing opportunities for early diagnosis and treatment of serious prostate cancer (PC).

    USANZ supports the appropriate use of Prostate-specific Antigen (PSA) testing, as the mainstay of early diagnosis of PC, in accordance with evidence-based clinical practice guidelines recently published by the Prostate Cancer Foundation of Australia (http://www.prostate.org.au/awareness/for-healthcare-professionals/clinical-practice-guidelines-on-psa-testing/) and endorsed numerous professional bodies including the National Health and Medical Research Council (NH&MRC).

    Among men diagnosed with PC, USANZ recommends active surveillance (AS) in preference to immediate treatment for those in whom the risk of progression is low. Contrary to Dr Haines’ claims, active treatment is currently undertaken in a diminishing minority of these patients, as shown by data from the Victorian Prostate Cancer Outcomes Registry. (https://www.mja.com.au/journal/2016/204/8/quality-care-achievements-prostate-cancer-outcomes-registry-victoria) The quoted data from the ProtecT trial further reinforce this pattern of practice, since the majority of men in that trial had low-risk disease that would currently be managed by AS.

    For men undergoing active treatment for PC, USANZ recognizes the availability of various treatment options, including surgery by various approaches and radiotherapy delivered by various techniques. An individualized and informed choice needs to be made, taking into account the particular benefits and side-effects of each treatment option as well as the features of the PC and patient preferences. Data from a prospective Australian study shows that two-thirds of men decide on their own treatment choice, more men choose surgery when making their own choice, while more men have radiation therapy when their doctor makes the treatment choice (http://onlinelibrary.wiley.com/doi/10.1111/j.1464-410X.2012.011533.x/full)

    USANZ encourages the provision of adequate information and access to multi-disciplinary management in order to facilitate decision-making for patients with PC. Contrary to the unpublished data quoted by Dr Haines, which is prone to evident bias by virtue of being based on a survey of men undergoing radiation therapy because surgery failed to cure their cancer, comparison of primary treatment modalities demonstrates similar levels of patient satisfaction across treatment modalities (http://onlinelibrary.wiley.com/doi/10.1111/j.1464-410X.2010.09833.x/full)

  3. Dr Benjamin C Cohney says:

    A very informative article & well worth reading. Their further findings will be awaited with interest.
    As an example the following history is worth noting. Xy a healthy 70 year old presented with an acute urinary retention. PSA was 32 & PR exam revealed a greatly enlarged prostate with three small hard areas. An ultrsound guide biopsy was negative & a TURP was performed. No evidence of neoplasia was found & follow-up After 18 years the patient remains well although with some further prostatic enlargment & further PSA’s over the years always show levels of between 9-12.
    The use of expensive Robotic surgery is one of the many “minimally invasive” procedures which have increased very much due to the manufacture of endoscopic tools which in cases like cholecystectomy is advantageous but of doubtful value in conditions like “carpal tunnel” syndrome.

  4. Anonymous says:

    More anecdotes: I had the seeds after two different surgeons wanted to operate. Glad I did, but still some mild symptoms for a long time. Two friends had high dose brachytherapy, with no residual radiation. Both were told they might die, but both are well with no residual symptoms. Unpleasant treatment, but the best outcomes of all options??

  5. Anonymous says:

    As per the article rates for treatment of early stage prostate cancer are decreasing which is pleasing. The next big issue in prostate cancer are treatment options for men with high risk disease. These are often the fellows who are not getting the opportunity to discuss all the treatment options as it is “urgent” they get their prostate cancer removed. I see many fellows opting for surgery then having to undergo radiation due to positive margins and/or metastastic disease a short time after surgery. They are then dealing with side effects from surgery and from radiation. In this setting quality of life is worse off than having a single mode of treatment. Men need to be referred to radiation oncology as well as urology to be able to get an informed decision so they can make the right choice of treatment for them.

  6. Professor Mark Frydenberg, President Urological Society of Australia and New Zealand says:

    In response to Anonymous 5, who is clearly a radiation oncologist , high risk disease is indeed high risk and therefore subject to planned multimodality therapy. In those who choose surgery it will include many who require both surgery +/- radiotherapy . The potential for surgery and radiotherapy is planned and is not a “failure” as written above, and patients have a discussion about the likelihood of requiring postoperative radiation as part of their counselling pre-operatively.

    It is also important for readers to understand that multimodality therapy for high risk disease treated with primary radiotherapy also includes neo-adjuvant androgen deprivation therapy (ADT) with adjuvant ADT for up to 2-3 years post treatment . So it is entirely misleading to suggest that high risk patients having radiotherapy have a “single mode of treatment ” , they have 2 modalities in virtually all cases. Those men can have irreversible changes to their hormonal axis after just 1-2 courses of ADT and hence in some cases permanently suffer the side effects of hot flashes , erectile dysfunction , weight gain , increased risks of diabetes and coronary artery disease , and in some cases emotional difficulties and cognitive deficits, as well as the potential toxicities associated with radiotherapy itself and the difficulties associated with treating primary radiotherapy failures should they occur.

    As stated in our reply above, USANZ remains committed to provision of information to patients, multi-disciplinary care in the management of prostate cancer, strongly supports the avoidance of all treatments for men at low risk of disease progression, and the avoidance of PSA testing in men who are unlikely to derive a survival benefit from such testing.

    USANZ, as part of an extensive multi-disciplinary committee ( including members from the radiation and medical oncology colleges) , was involved in the development of the latest NHMRC guidelines and adheres to the principles and recommendations of those guidelines .

    Surgery however remains a key option ( but not the only one ) for men with intermediate and high risk prostate cancer. Urological assessment and management is not a “scandal” as stated in the lead article by Haines. Using emotive terminology , unpublished non evidence based anecdotes and quoting studies with significant inherent biases does nothing to enhance the quality of care of prostate cancer patients in Australia.

    All men need to be fully informed of their choices regarding therapy ( if they actually need it ) for prostate cancer be that surgery or radiotherapy, with a full discussion about all possible morbidity associated with both modalities of treatments as well as the expected benefits. USANZ always encourages the principle of additional opinions from other urologists , radiation or medical oncologists to assist men in making an informed decision regarding their management.

  7. middle aged male GP says:

    Have to say that I have had many patients diagnosed with Gleason 7 disease following PSA screening and biopsy. I can’t think of any that haven’t had surgery sooner or later. It is difficult to know how much is due to advice from the treating surgeon and how much is due to the intolerance of uncertainty and misunderstanding in those diagnosed patients.

    I also have the discussion with ALL my patients prior to screening. A few opt for “no test”, but many who do really don’t fully understand the information or concepts of screening. I have patients tell me after that their wife insists because they have screening tests, or say they will just do it and then see what happens.

    Inevitably men come in and say, I want the test (even over 80 year olds) as their friend had one and now he’s had prostate cancer diagnosed from the test and cured.

  8. Sandra Turner says:

    Good on you Ian for advocating for Australian men. Scientific interpretation, bias and financial interests aside – it is so obvious to all of us that treat prostate cancer that many men get a bad deal – sometimes shamefully bad. We see them in our practices every day, sadly. There is a growing global groundswell amongst patient advocate groups, GPs, families and men that reject surgical gate-keeping which is clearly not in men’s best interests. It will change and articles like yours are all part of raising awareness and keeping the pressure on – thanks.

  9. Chris M says:

    as a man who has been through it all, it is good to hear the the urology group does support men getting all their information before jumping into treatment. However, for me, and others I have met at the support group, this was not what happened in practice. I was told that an operation with the robot was the only way and the best way. In my fragile state of mind at the time I accepted the advice of my doctor, but now I wish I had at least known my options (i might have chosen the radioactive beads, or might have gone ahead with the surgery).
    Good to see this article which points out the problem, but will any changes really happen?

  10. Anonymous says:

    Robotic surgery is unfortunately here to stay. What a very sad indictment on urologists who purport to practice evidence based medicine.
    No data whatsoever in comparing laparoscopic with robotic surgery in a wide range of cancers. Why not? Because the robotic companies do not want this to be the case of course. It is not rocket science to understand that the potential benefits of robotics over other minimally invasive techniques is at best marginal and at worst may even lead to more extensive dissections which may in fact be deleterious. Is there one article anywhere showing a survival benefit? Could we imagine a new drug being introduced for cancer without comparison to standard therapy? Sad to say but it is too late….unless financial gain is minimised and then we might see common sense prevail. I will not hold my breath.

  11. Anonymous says:

    I am what my defence lawyers call a “marginal ” GP with a bad rap sheet (they avoid the term poor training by the Australian doctors, or forceful marginalization by the status quo authorities), however these are my views based on studies in Pathology and by the NCI (USA). If Dr. Ian Haines says that in the ProtecT studies published in NEJM only 17 out of the 1643 (1%) died in 10 years , it would mean that the lesions identified as cancers were either biologically indolent, or a misdiagnosis, or low grade cancer, he also uses the term “recent and groundbreaking” and I wonder if genomic or proteomics were included in further identifying the nature of these cancers (Molecular Pathology of Prostate cancer, Journal of clinical pathology 2005, 58(7), 673-684) Since we have not reached that degree of scientific accuracy to know how each tumour will behave depending on its genetic makeup, this study is acceptable by current standards, not by future standards. Dr. Frank Gardiner says choose the right surgeon not the methodology, your trained surgeons uses 18th century instruments, scalpels blades etc, the ROBOTIC is a 21st century instrument, please embrace it, as you will become redundant if this exponential growth of medicine already storming the world. there is some discussion on the use of radiation therapy, and this is a very crude method, hopefully now with the new modality of treatment called PROTON beam, they will be less surrounding tissue damage and greater accuracy, within the constraints of 18th to 20 century medicine most of the above discussion is valid-this is why I am a “marginalised” doctor.

  12. Anonymous says:

    AIHW data on the median age of death from various cancers in 2013 show 82 years for prostate cancer; 75 for all cancers combined and 78 from all causes combined (http://www.aihw.gov.au/deaths/grim-books/).

    Put simply, if you are going to die from (rather than with) prostate cancer it will most likely be toward the end of the average normal lifespan. That is an important message that is seldom given any prominence by agencies promoting prostate testing — effectively prostate cancer screening when promoted through mass media.

  13. Dr Louis Fenelon says:

    As (another) GP I find prostate cancer a diagnosis associated with great prejudice. GPs spend a large amount of time managing patients upset at a lack of diagnosis to explain their “disease”. In the case of Ca prostate we are armed with the tools to diagnose accurately, although not always easily or cheaply.
    PSA testing has become a controversy and not a tool. If a wound looks infected no-one questions doing a wound swab. The choice to treat Staph or Pseudomonas if grown is a clinical choice. The use of PSA testing is no different. Certainly it is no different to the use of mammography as a breast cancer screening tool, except that it offers a better chance of avoiding distant spread of disease at diagnosis than mammography.
    If prostate cancer is not being managed appropriately, that is not the fault of GPs, PSA tests or the manufacturers of robotic surgical tools. If 100 specialists see one man with Ca prostate the chances are there will be more opinions on management than if a woman with breast cancer fronts a similar panel of learned experts. Specifically there is almost never a gold standard treatment for men with this disease. That may reflect the dismal emphasis given to men’s health research and funding in comparison to women’s health (did I really say that?), but it definitely does not reflect the damage done when a GP actually does diagnose prostate cancer. The use of history, examination, appropriately timed and repeated PSA testing to diagnose cancer is not a controversy, but a means to diagnosis. GPs don’t all send off their patient with an abnormal result rather than a diagnosis, but it is getting harder to learn how to diagnose prostate disease rather than easier due to prejudices against tests and “unnecessary” management of cancer.
    Knowledge is power and I think the recent trends to devalue prostate cancer testing and diagnosis are a pretty sad and knee-jerk reaction to a lack of general knowledge about the disease. I feel fortunate to be an older GP who has not grown up force-fed on the belief we should not screen for prostate cancer (just for a lot of other diseases). So please don’t force feed GPs with this new form of prejudiced Kool-Aid. Provide us with a structure for diagnosing and directing patients to appropriate care so we can help our men. Specialist treatment options come after diagnosis, not as part of the same argument.
    I would be very interested in hearing how many critics actually have had their own PSA tested? I’d also like to know how many learned experts believe in chancing metastatic disease when there genuinely is an alternative available? Put yourself in the shoes of the average man!

  14. Chris O'Neill says:

    Here is some non-emotive language and non-anecdotal evidence.

    Cancer screening, which includes PSA screening, has never been shown to “save lives”: http://www.bmj.com/content/352/bmj.h6080

    PSA screening may pick up the small number of dangerous but curable cancers earlier but it also picks up a vast number of harmless cancers that also get treated. These treatments are not harmless and increase the risk of death from other causes. The only way to decide if there is a net benefit is from an improvement in overall survival and PSA screening has never been shown to improve overall survival.

  15. Anonymous says:

    5 Years ago I had prostate surgery not robotic on the advice of my urologist. I have no regrets about having surgery because I am alive and healthy to tell my story. I was given options but took my specialists advice. Yes certain side effects are not pleasant but that is a small price to pay for being alive. The after surgery care team also played a major part in my recovery and I could not have asked for a better team both surgical and nursing to look after me.
    Peoples attitude to their diagnosis also plays a big part in the treatment decision but that is only my opinion. To all the survivors congratulations. To those who passed deepest sympathies to the families

  16. Chris O'Neill says:

    “that is a small price to pay for being alive”

    You are a fortunate man that you can write with such certainty.

  17. Chris O'Neill says:

    Shomik Sengupta stated:

    “USANZ notes with concern the use of emotive language and anecdotal evidence in this article by Dr Haines”

    Anecdotes they may be but they are in no way contradicted by the objective evidence in the citation provided by Shomik Sengupta: https://www.mja.com.au/journal/2016/204/8/quality-care-achievements-prostate-cancer-outcomes-registry-victoria

    This citation says: “There was a downward trend over the 5 years in the percentage of men with low risk disease who underwent active treatment (45% to 34%; P = 0.024)”

    So there were still a large number of men, 34% in 2013, to supply those coming to Ian Haines for self-generated second opinions for low risk prostate cancer who may have not had their options properly outlined.

    34% of men being actively treated for low risk (and PSA detected) prostate cancer is still 34% too many, some of those cases being “anecdotes” notwithstanding.

    Some may describe the word “scandal” as emotive but that doesn’t stop it from being an accurate description of what has happened and what continues to happen.

    Perhaps a new quality of care measure should be introduced that measures the proportion of men who are advised that PSA screening has never been shown to result in an overall saving of lives compared with usual care. Until this measure reaches 100% (and it was probably pretty low not that long ago) then the situation continues to be a scandal, so called “emotive” word notwithstanding.

  18. Anonymous says:

    I was asymptomatic, 65 yrs old, and diagnosed with Gleason 8. My urologist recommended radiation, and after 6 months of ADT I had intermediate dose radiation followed by high dose brachytherapy. I have had a PSA of 0.01 ever since. I am now 79, fit and healthy. MInor bladder leakage has been my only side effect. I consider this to be acceptable compared to the risk of metatastic spread had I done nothing.

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