Men are distressed, confused and conflicted about the treatment options for early stage and non-aggressive prostate cancer
“Everybody’s got different ideas about it,” one man reported when talking about his diagnosis of localised, low risk prostate cancer (LRPC). Our research program seeks to understand and improve Australian men’s and partners’ experience of treatment decision-making following LRPC diagnosis when active surveillance (AS) is a recommended treatment option. “AS is a management option that has become widely accepted and adopted in the medical community as a way of reducing unnecessary treatment for LRPC, which is early stage and slow growing” says Prof Declan Murphy, Director of Genitourinary Oncology (GU) at Peter MacCallum Centre. AS is a proactive management plan for LRPC in which the tumour is strictly monitored, with radical treatment either avoided or delayed unless tests, such as PSA blood levels, digital rectal examinations or further biopsies and imaging, indicate disease progression. In the past decade LRPC management has shifted from three radical treatment options (radical prostatectomy, external beam radiotherapy, or brachytherapy) to also include AS.
Prostate cancer is the most commonly diagnosed cancer in Australian males (19,508 cases) as reported by the Australian Institute of Health and Welfare (AIHW) Cancer In Australia 2019. Reassuringly, prostate cancer had close to 100% 5-year relative survival when diagnosed at Stage 1 (localised, low-risk and contained within the prostate) compared to stage 5 (aggressive, spread outside of the prostate) where 5-year survival fell to 36%. With an estimated 1 in 6 risk of diagnosis before the age of 85, prostate cancer was reported as being diagnosed on average before Stage 2 (based on 2011 data).
Early detection of prostate cancer is attributed to prostate-specific antigen (PSA) blood testing which was introduced in 1987. More recently, the clinical practice guidelines on PSA Testing and the early management of test detected prostate cancer (Prostate Cancer Foundation of Australia and Cancer Council Australia 2016) were endorsed by the National Health and Medical Research Council. Whilst the Urological Society of Australia and New Zealand (USANZ) support the new guidelines, they have issued a statement on their website that the selection criteria for AS are rapidly changing areas and clinical practice guidelines on PSA testing selection for AS is considerably broader than other guidelines (e.g. European Association of Urology) and established surveillance protocols (e.g. PRIAS study). USANZ encourage PCFA and Cancer Australia to review these areas of the guidelines frequently and suggest that the decision to select a patient for AS only occur after careful specialist counselling of patients by urologists, radiation and/or medical oncologists.
Internationally, we found there is inconsistent criteria for AS eligibility and expert dissension on clinical implications of findings from ongoing trials comparing observation (monitoring the cancer) and radical treatment. Moreover, it can be clinically challenging to predict if a patient has slow-growing cancer or an aggressive one. Whilst curative treatment (radical prostatectomy, brachytherapy and external beam radiotherapy) aims to extend a man’s length of life, more aggressive treatment can have considerable side effects which impact on his overall quality of life. Making informed choices and avoiding decisional regret is important when weighing up potentially curative treatment with potentially on-going and distressing side-effects including urinary incontinence, bowel incontinence and sexual dysfunction.
Yet despite more choice, men can become overwhelmed about what to do. An Australian study found that urologists (n=107) reported more patient difficulties with treatment decision-making than any other cancer clinician group. This is especially true when treatment choices are comparable in terms of survival outcomes but the side effect profiles differ markedly. Through our own qualitative research, we found that patients were upset by contradictory information about treatment efficacy and likely side-effects associated with each management option. Information sources included medical advice, opinions from family and friends, brochures and internet sites
Understandably, distress experienced by men and partners following diagnosis is compounded by bewilderment and confusion when there is contrasting expert views and information on optimal LRPC management. One Australian study reported that 63% of men with prostate cancer experienced high decision-related distress which remained high amongst 42% of men at 12 months. This highlights the complexities of explaining all options which can be time-consuming and difficult for clinicians.
Our research found that men found it helpful if health professionals gave them enough time, quality information, clear answers, and were contactable and reputable. One man was “very comfortable” with his urologist adding, “I’d googled him. … endless qualifications, he travels overseas to conferences!” We also found that treatment advice for prostate cancer tends to reflect the specialist’s expertise. The urologist is the specialist surgeon who performs the prostate biopsy and communicates the diagnosis to his patient. The patient is only seen by a medical or radiation oncologist or another expert if they referred on (or as requested by the patient). As the urologist provides the diagnosis, s/he generally plays a central role in the patient’s decision-making process and subsequent management, but this did not ensure accurate patient understanding.
Even men who were on AS did not always understand what the purpose of AS was. It was often confused with “Watchful Waiting” (WW; symptom relief and minimal monitoring for men with limited life expectancy). Some did not realise that they were being managed with AS. One said it was a “bit of time to think”. Men’s use of multiple terms to represent AS mirrored international inconsistencies in descriptors for AS and, possibly, their doctors’ inaccurate terminology. Confusion intensified when information was out of date, or family and friends questioned AS as an effective management approach, urging the patient to ‘get the cancer out’. Even some participants who had been managed with AS, asked the research interviewer to explain AS.
There are also some men who just really want to get rid of the cancer regardless of what they are advised. One man said he disliked “not doing anything” about his cancer. Urological surgeon, Prof Mark Frydenberg said “High levels of distress and confusion regarding treatment decision-making amongst men eligible for AS is common. Some men feeling anxious about not receiving curative treatment.” This emotional state may impede a man’s ability to process complex information, weigh up the risks and benefits and make an informed decision.
Troubling biopsy side effects, “jumping” PSA levels or memories of inconsistent treatment recommendations after diagnosis were also stressful. Although initially thinking that AS was advantageous, one man now considered AS an “irrelevant” period of “head in the sand” which was just avoiding “the inevitable” and prevented potentially less invasive treatment earlier. In contrast, other men and their partners were “relieved” to be managed by AS as opposed to more aggressive treatment options.
Ultimately, the treatment decision-making depends on the individuals’ own preferences and values in consultation with expert opinion. There are pros and cons to consider in terms of patient experience, potential side-effects, additional treatment and out-of-pocket costs. For example, a person may weigh up: travelling to daily treatment over many weeks (radiotherapy); hospitalisation and taking time off work to recover (surgery); or being closely monitored over potentially years and delaying treatment until it is necessary (AS). Ideally, treatment choice should reflect the weighing up of benefits and risks pertinent to the individual, in conjunction with a realistic projection of life expectancy and lifestyle, yet most men with LRPC do not consider all options nor make decisions concordant with their preferences and values.
The NAVIGATE Trial
Men need to be well informed and understand all of the management options for LRPC. Our research team has co-designed an online information and decision-support tool to facilitates men’s and their partners’ understanding of treatment options, associated benefits and risks and to ensure their treatment choice is concordant with their values. We are now running a NHMRC funded trial “NAVIGATE” to evaluate the impact of this online resource for men with LRPC when making a treatment decision, and to assess the uptake of AS; satisfaction with treatment decision, decisional conflict and regret. This resource presents up-to-date, unbiased information tailored to Australian men in multiple formats: written, graphical and video, then lead the man and their partner through a values clarification exercise, which is the process of weighing up the benefits and costs in terms of their own values, of whether to adopt AS or curative treatment: RP, BT or EBRT. Incorporating the assessment of lifestyle factors into in the treatment decision-making process reflects the complexities of decision-making in real clinical practice. Included are over 40 videos of men, partners, oncologists, urologists and specialist prostate nurses to provide a range of perspectives and personal experiences. Clinicians can refer their patients to the trial or men (and their partners) are able to ‘self-refer’ through the trial website: www.navigateprostate.com.au