The fear of prostate cancer in men with lower urinary tract symptoms: should symptomatic men be screened?

Authors


C. Brown, Urological Research Fellow, The Clinical Effectiveness Unit, Royal College of Surgeons of England, 35/43 Lincoln's Inn Fields, London, WC2A 3PE, UK. e-mail: cbrown@rcseng.ac.uk

Abstract

OBJECTIVE

To explore the concerns and worries in men with uncomplicated lower urinary tract symptoms (LUTS, but no evidence of prostate cancer) relating to their symptoms.

Patients and methods

There is no current prostate cancer screening programme in the UK. Evidence suggests that men with LUTS have the same risk of prostate cancer as aged-matched asymptomatic men. However, most men with LUTS are ‘screened’ with a digital rectal examination (DRE) and prostate specific antigen (PSA) testing as part of routine assessment. Whether this screening offers any benefit to patients and whether national screening for prostate cancer and subsequent early treatment offer any long-term survival or quality of life benefit is uncertain. Thus 30 men with uncomplicated LUTS were qualitatively interviewed to explore their concerns and worries about their symptoms. Interviews were transcribed verbatim and subjected to content analysis using validated techniques.

RESULTS

Of the 30 men, 22 (73%) expressed a fear of prostate cancer at the time of their initial presentation. This fear was independent of race, social class and symptom severity; older men were less worried. Of the 22, 15 (68%) stated that after reassurance their symptoms were less bothersome and easier to cope with.

CONCLUSIONS

These findings suggest there is a considerable gain in health by explicitly addressing the concerns of prostate cancer in men with uncomplicated LUTS. Informing these men of their true risk of prostate cancer (before or after a DRE and PSA estimate) may alleviate much of the bother associated with their symptoms. Despite no evidence of any greater risk of prostate cancer than in asymptomatic men, symptomatic men should continue to be screened after appropriate counselling.

INTRODUCTION

In men with organ-confined prostate cancer there is doubt about the effectiveness of early treatment for survival and quality of life [1]. There is insufficient evidence to support a population-based screening programme in the UK, and currently whether or not to ‘screen’ men for prostate cancer (with PSA testing and a DRE) is left to individual discretion. This policy may change when the results of large, randomized, multicentre trials investigating the efficacy of early treatment are complete. Current NHS Department of Health Guidelines state that any man having a PSA test should be appropriately counselled and allowed to make an informed decision [2].

LUTS are extremely common, with half of men aged> 65 years reporting symptoms [3]. Previously the main cause of LUTS was thought to be prostatic enlargement, but it is now generally recognized that LUTS can be caused by cognitive, renal or bladder dysfunction, in addition to the enlarging prostate in the ageing male [4].

Many men with LUTS are screened for prostate cancer with PSA testing and a DRE as part of a routine prostate assessment. Several credible studies have shown that men with LUTS are at no greater risk of prostate cancer than asymptomatic men of the same age [5–8]. Despite this evidence, screening of symptomatic men is widespread. Does this screening offer any benefit to patients?

The symptom severity of men presenting in primary care with LUTS is similar to that of an aged-matched population who have not sought medical treatment [9]. What drives this health-seeking behaviour is unknown; it may be a fear of prostate cancer. This study uses qualitative research methods to explore these issues.

PATIENTS AND METHODS

Detailed qualitative interviews were conducted with 30 consecutive men who had uncomplicated LUTS (i.e. prostate cancer excluded) attending two different urology outpatient clinics. Eligible men were recruited from the urology outpatients of a district general hospital and a teaching hospital. All the men interviewed were new patients on their first follow-up visit. Two men declined to participate, as they were not comfortable with being audiotaped. Men were excluded if they were aged < 50 years, had LUTS caused by any urological malignancy, had previous prostatic surgery or pelvic radiotherapy, or complications of urinary obstruction (acute retention, bladder stones, renal failure, recurrent UTI or residual urinary volumes of> 200 mL). The characteristics of the men are shown in Table 1. Ethical approval was sought and obtained.

Table 1.  Sample characteristics of the 30 men with uncomplicated LUTS who were interviewed
CharacteristicResult (sd)
Number of interviews30
Mean age, years71.1 (5.9)
Social class, n
I  6
II  2
III14
IV  6
V  2
Race, n
Caucasian19
Afro-Caribbean  6
Asian  4
Other  1
Mean IPSS16.1 (4.5)
Mean maximum urinary flow rate, mL/s11.4 (3.1)

The interviews were conducted in a quiet room within the outpatient department by one of the authors (C.B.). The aim of the interviews was to explore the patient's worries and concerns about their symptoms. Interviews were conducted around a series of open questions:

  • •   What are the main problems?
  • •   How long have you been coming for tests?
  • •   When you first got your symptoms what did you think was going on?
  • •   What did you believe was the cause of your symptoms?
  • •   Did you ever worry about your symptoms, if so why?

For those who had worries or concerns about prostate cancer

  • •   Did you ever discuss these issues with your GP?
  • •   When the doctor here told you in the clinic that there was no evidence of prostate cancer, how did it make you feel?
  • •   Do you think it has effected your symptoms in any way?
  • •   Do you have any questions?

No direct questions were asked about prostate cancer; if patients discussed prostate cancer, prompts were used to explore these issues further. Each interview lasted ≈ 30 min.

The interviews were audiotaped, transcribed verbatim and assessed using content analysis by grounded theory methods [10]. Transcripts were read by two of the authors (C.B. and L.O.), similar themes were coded and categorized, and as more interviews were conducted a framework was developed with which subsequent interviews were analysed. We report the findings relating to prostate cancer.

RESULTS

Overall many men (22 of the 30, 73%) expressed fears about prostate cancer in relation to their LUTS at the time of their initial presentation. This was independent of race, social class and symptom severity. Older men were less frequently concerned about prostate cancer (12 of the 20 men aged> 65 years) than younger men (all of aged ≤ 65, P < 0.05). Of the men who expressed a worry about prostate cancer, 15 (68%) stated that although their symptoms were largely unchanged when reassured on this matter, they were less bothersome and easier to cope with. Half of the men interviewed had personal experience of friends or relatives with prostate cancer, and thought this might have influenced their understanding of their symptoms. The Appendix illustrates some of these opinions and beliefs expressed about prostate cancer by men with uncomplicated LUTS.

Many of the men interviewed had waited a considerable period before their cancer risk was assessed with a DRE and PSA by a urologist. In most (19/30, 63%) the issues relating to prostate cancer had not been mentioned to the patient by the referring GP.

DISCUSSION

These findings suggest that there is a considerable gain in health by explicitly addressing the concerns of prostate cancer in men with uncomplicated LUTS. Although prostate cancer screening among asymptomatic men is not standard practice in the UK it is common in men with LUTS, despite no evidence of an increased risk. However, explicitly informing these men of their true risk of prostate cancer (before or after a DRE and PSA estimation) may alleviate much of the bother associated with their symptoms. Severe bother is the most critical factor when deciding to proceed through the treatment cascade, e.g. from conservative to medical therapy [11]. Bother is also the greatest predictor of the effectiveness of an intervention, e.g. with TURP [12].

A fear of prostate cancer may be the principle reason why men seek medical attention, as their perceived risk of cancer greatly exceeds the actual risk. With so much information readily available for men about their health (especially prostate cancer) it is important for medical professionals to qualify the beliefs and concerns of their patients. In men with uncomplicated LUTS reassurance about cancer may be the only intervention required.

In conclusion, the management of men with uncomplicated LUTS will be suboptimal unless issues relating to the true probability of prostate cancer are explicitly addressed. These issues should be discussed in primary care whilst awaiting urological assessment, to avoid lengthy unnecessary worry with an adverse effect on symptoms. Despite no evidence of any greater risk of prostate cancer than in asymptomatic men, symptomatic men should continue to be screened after appropriate counselling.

ACKNOWLEDGEMENTS

We thank all the men who agreed to be interviewed in this study, and Mr Gary Das (Mayday Hospital NHS Trust) and Mr Mark Emberton (Middlesex Hospital) for their support and access to their patients. This study is part of a wider project ‘Self-management for men with uncomplicated lower urinary tract symptoms’, conducted in a collaboration between The Royal College of Surgeons of England and The Institute of Urology. C.B. drafted the paper and all the authors contributed to the final version. The study is supported by The Royal College of Surgeons of England Research Fellowships, funded by Cazenove & Co.

APPENDIX

Beliefs about prostate cancer in men with LUTS:

‘I had the blood tests and so on for prostate cancer and they said the prostate was not cancerous - I felt a great relief it put all the symptoms into perspective.’

‘Friends have had prostate cancer and yes I was aware of it from the paper, when I got my bother [LUTS] I just assumed it was my turn.’

‘I was told I had a swollen prostate - I just linked the two, [cancer] I got myself in a right state - every time I got up at night to pee it started me worrying again. My GP didn’t mention cancer so I didn’t.’

‘In fact I raised the matter when I had my appointment - what a relief when I found out it was part of normal ageing [LUTS], now I just get on with things.’

‘I suppose it was at the back of my mind. Yes I am definitely less bothered by it all.’

‘One of my friends told me that those people that have an enlarged prostates eventually get prostate cancer, I knew I had the symptoms I just wanted to find out, now I know its OK I just cope as normal.’

‘Of course you worry about cancer when you are getting older, to know the doctors aren’t concerned you just accept what you have got [LUTS] an get on, I could have done with this information about a year ago.’

‘Obviously when the symptoms started I realised there was a problem that's why I came for help, now its nothing too serious I don’t really want anything done.’

‘Well initially before I had the examinations I was very concerned about cancer. I wish my GP had said something as I was too frightened to, I had to wait until today. I’m happy the way, I am I don’t really want treatment.’

‘Mr. X [Urologist] told me that the prostate was a bit big - I was wondering that it could be cancer because it's big, no-one told me it was not cancer - why not?’

‘I have had three blood tests to do with cancer and I have been told they are all clear, it's a weight of my mind - I feel normal again’.

‘I had a brother who died of prostate cancer so it was real peace of mind.’

Ancillary