Kiwi Prostate Cancer Survivors Wrestling With ED Following Treatment: New Findings

PCFNZ launching ‘Life After Treatment’ educational roadshow supporting Aotearoa New Zealand’s prostate cancer community

Kiwis treated for our nation’s most commonly diagnosed male cancer – prostate cancer(1, 2) – report experiencing a confidence-robbing,(3) stigmatised treatment side-effect, erectile dysfunction (ED),(4) according to Prostate Cancer Foundation New Zealand (PCFNZ) survey findings released today.(5)

Nine in 10 (93 per cent) survey respondents reported developing ED after treatment; 36 per cent felt “robbed of confidence”; while 28 per cent experienced “moderate compromise” to their mental health.(5)

PCFNZ’s release of the new survey findings today coincides with the first of six, free, PCFNZ public information evenings for prostate cancer survivors, and their families, kicking off in Tauranga this evening.

Featuring leading Urologists and health professional speakers, the PCFNZ ‘Prostate Cancer – Life After Treatment’ roadshow will tour Tauranga, Palmerston North, Auckland, Dunedin, Christchurch and Wellington between November 5 – 14, 2024. Running between 7:00-8:30pm, each event will canvass the potential side effects of prostate cancer treatment, and treatment options available to help manage, and aid recovery.

According to PCFNZ Chief Executive Officer, Peter Dickens,for the more than 4,000 New Zealand men diagnosed with prostate cancer each year, treatment can disrupt urinary, bowel and sexual function.(6-8)

“Findings from our PCFNZ ‘Life After Treatment’ survey complements data from the Prostate Cancer Outcomes Registry (PCOR-NZ), which reported sexual function as the most compromised patient outcome associated with prostate cancer treatment – 38 per cent of patients reported moderate to substantial ‘bother’, compared to bother with urinary function (10 per cent) and bowel function (5 per cent).(9)

“Our survey aimed to glean insights from patients treated for prostate cancer, on the physical, mental, emotional and relationship challenges they have faced,” said Mr Dickens.

“Numerous prostate cancer survivors experience distressing sexual and urinary difficulties following surgery, which compromise their mental health and wellbeing, and intimate relationships.(10)

“Many men report their quality of life to be severely, or moderately affected by ED following prostate cancer treatment,”(10) Mr Dickens said.

“Similarly, urinary incontinence (UI) can also significantly impair a man’s quality of life following prostate cancer treatment.”(11, 12)

ED is a common, yet under-diagnosed and under-treated men’s health condition(4, 13) affecting one in every three New Zealand men aged 40-70 years.(14)

“Almost 7 in 10 respondents (69 per cent) to our survey reported they were experiencing ED very frequently (at least once a week), while nearly 8 in 10 respondents (78 per cent) have experienced UI, with 45 per cent describing their symptoms as either ‘moderate’ or ‘severe’,”(5) said Mr Dickens.

“Concerningly, more than two in five (42 per cent) of the prostate cancer survivors who participated in our survey reported they were neither informed, nor adequately educated on the possibility of developing ED after prostate cancer treatment.(5)

“We are therefore, encouraging men and their families nation-wide, to attend our ‘Prostate Cancer: Life After Treatment’ public information evenings, to learn about, and discuss management and treatment options with leading experts in the field,” Mr Dickens said.

Urologist and Clinical Director of Urology, Health New Zealand Te Whatu Ora Waitaha Canterbury, and Clinical Senior Lecturer, University of Otago, Mr Giovanni Losco, Christchurch, said ED is an outcome of prostate cancer surgery for many men. While the cancer may be effectively treated, those who fail to seek help may face future challenges with erectile function.(10, 15)

“ED can lead to feelings of shame and frustration, may compromise mental health, and even taint a man’s view of himself as being ‘complete or whole’.3, (16-18)

“Almost half (47 per cent) of the Life After Treatment survey respondents reported living with ED following prostate cancer treatment had ‘severely affected’ their sex drive, while 37 per cent were left feeling ‘moderately frustrated’, and 36 per cent ‘lacking confidence’,”(5) Mr Losco said.

“Living with ED can further compromise men’s work, friend, and intimate relationships, with 40 per cent of the survey respondents claiming the condition, post-prostate cancer treatment, had led to a ‘severe loss of intimacy’ with their partner.”(5)

According to the Urological Society of Australia and New Zealand (USANZ) President, Professor Helen O'Connell, AO, men who have experienced, or are at risk of developing prostate cancer, need to know effective treatment is available for ED.

“As USANZ President, I want men to know that we recognise ED and UI as important health problems.

“Once men have both overcome, and recovered from prostate cancer surgery, I urge them to be proactive in understanding how to both prevent, and recover from ED and UI,” said Prof O’Connell.

“Importantly, a significant cause of ED is a history of prostate cancer and its treatment.

“Should ED persist, don’t suffer in silence. Talk to your Urologist about your treatment options, because outside treatment for prostate cancer, there are other risk factors for developing ED,” Prof O’Connell said.

“While it may take a little bit of courage, there are potential rewards for your relationship, mental health, partner, and your partnership in addressing the underlying causes of, and accessing effective treatment for both ED and UI.”

Semi-retiree, father-to-two, and grandfather-to-three (with another on the way), Mike, 73, Tauranga, was diagnosed with ED and UI in 2016, following prostate cancer surgery. Although his UI improved within a few months, unfortunately Mike continued to grapple with the longer-term surgical side-effect, ED.

“Prostate cancer itself was a really big thing, but then I was forced to contend with additional changes to my body following the surgery.

“With UI, I set myself a goal to improve my symptoms, so I could stop using [incontinence] pads as quickly as possible,” Mike said.

“I followed up with my surgeon, visited a physio, did pelvic floor exercises, and had a nurse call in every week. I managed my UI well and recovered within two-to-three months.

“However, managing ED proved a much more protracted, complex journey, for which my main challenge was managing my compromised mental health,” said Mike.

“As a man, I felt a loss. When you’re in a relationship, intimacy is vital, and I feared losing that special bond.

Today Mike has an important, but poignant message for other Kiwi men (prostate cancer survivors or otherwise) living with ED.

“Be proactive, and take the conversation lead with your family doctor.”

About the survey

PCFNZ conducted an online anonymous survey open to the public that attracted responses from 123 New Zealand men aged 45+ years between October 8 – 21, 2024. The ‘Prostate Cancer – Life After Treatment’ survey strove to glean insights from prostate cancer survivors about their experience of ED and UI following prostate cancer treatment.

About Prostate Cancer Foundation NZ (PCFNZ)

Prostate Cancer Foundation NZ provides vital support, education and information to patients, their families and whānau across Aotearoa New Zealand, as well as reducing the impact of prostate cancer through raising awareness, funding NZ-based research and advocating for improved standards of care.

PCFNZ is Aotearoa New Zealand’s leading male cancer charity. Our vision is to significantly reduce and ultimately end suffering from prostate and testicular cancer. We achieve this by providing support and education to the thousands of men and their families, those caring for them, and health professionals; advocating on their behalf for improved health outcomes; and investing in research that raises the understanding of the cancers, the effects on men, their families and our communities.

To learn more about prostate cancer, ED and UI, head to prostate.org.nz or call the PCFNZ Information Service on 0800 66 0800.

To register for a PCFNZ ‘Prostate Cancer – Life After Treatment’ event in your area, visit: here.

ROADSHOW INFORMATION

References

1. Prostate Cancer Foundation of New Zealand. Prostate Cancer, what is it? [Available from: https://prostate.org.nz/prostate-cancer].

2. Prostate Cancer Outcome Registry of Australia and New Zealand. What is PCOR-ANZ? [Available from: https://prostatecancerregistry.org/].

3. Ian A R Smith NM, Prem Rashid. Erectile dysfunction – when tablets don’t work. Australian Journal for General Practitioners. 2012;39:301-5.

4. Al-Shaiji T. Breaking the Ice of Erectile Dysfunction Taboo: A Focus on Clinician-Patient Communication. Journal of Patient Experience. 2022;9.

5. Prostate Cancer Foundation of New Zealand. Prostate cancer – Life after treatment survey. 2024. 6. Prostate Cancer Foundation. Prostate Cancer Side Effects [Available from: https://www.pcf.org/about prostate-cancer/prostate-cancer-side-effects/].

7. Centre for Health Outcomes Measures New Zealand. New Zealand Prostate Cancer Outcome Registry [Available from: https://www.chomnz.org.nz/pcor-nz

registry#:~:text=Cancer%20Outcome%20Registry-,R%C4%81rangi%20Hua%20Mate%20Pukupuku%20Repe%20T%C4%81tea%20o%20Aotearoa,male%20c ancer%20in%20New%20Zealand.].

8. National Institutes of Health. Comparing side effects after prostate cancer treatment [Available from: https://www.nih.gov/news-events/nih-research-matters/comparing-side-effects-after-prostate cancer-treatment].

9. (PCOR-ANZ) PCORAaNZ. Prostate cancer across Australia and New Zealand 2023 [Available from: https://prostatecancerregistry.org/pcor_cms/media/reports/pcor-anz_2023_annual_report_final.pdf]. 10. Albaugh JA, Sufrin N, Lapin BR, Petkewicz J, Tenfelde S. Life after prostate cancer treatment: a mixed methods study of the experiences of men with sexual dysfunction and their partners. BMC Urology. 2017;17(1):45.

11. Miller DC, Sanda MG, Dunn RL, Montie JE, Pimentel H, Sandler HM, et al. Long-term outcomes among localized prostate cancer survivors: health-related quality-of-life changes after radical prostatectomy, external radiation, and brachytherapy. J Clin Oncol. 2005;23(12):2772-80.

12. Comiter CV, Speed J,. Urinary incontinence after prostate treatment 2024 [Available from: https://www.uptodate.com/contents/urinary-incontinence-after-prostate-treatment]. 13. Arduca P. Erectile dysfunction - a guide to diagnosis and management. Australian Family Physician. 2003;32(6):414-20.

14. Quilter M, Hodges L, von Hurst P, Borman B, Coad J. Male Sexual Function in New Zealand: A Population-Based Cross-Sectional Survey of the Prevalence of Erectile Dysfunction in Men Aged 40–70 Years. The Journal of Sexual Medicine. 2017;14(7):928-36.

15. Everything below the belt 2023.

16. Elterman DS, Bhattacharyya SK, Mafilios M, Woodward E, Nitschelm K, Burnett AL. The Quality of Life and Economic Burden of Erectile Dysfunction. Res Rep Urol. 2021;13:79-86.

17. Li H, Gao T, Wang R. The role of the sexual partner in managing erectile dysfunction. Nature Reviews Urology. 2016;13(3):168-77.

18. Leslie SW, Sooriyamoorthy T. Erectile Dysfunction. StatPearls. Treasure Island (FL)2024.

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