Survey Findings: Men with Prostate Cancer

1. Survey among men who have had Prostate Cancer Media Briefing: 30th September 2011

2. Background Research was conducted in 30th May -10th July 2011. • Millward Brown Lansdowne conducted a survey among men who have had, or are suffering from Prostate Cancer, in order to provide information so that services and support can be improved for these men. What? • The self-completion survey was conducted either on pen and paper or via a secure link online. The survey was promoted via a number of methods including on the Cancer.ie website, through support groups, via PR and adverting and by word of mouth and individual contacts. Overall 218 valid surveys were completed. How? When? • The main points covered in the survey were: • Experience at the time of diagnosis • Treatment Choices • Side effects of treatment • Information and support needs from investigation through to treatment and beyond Why?

3. 4 in 10 had been diagnosed within the past 2 years, with the majority aged over 55. • 1/3 of those interviewed had some previous knowledge of prostate cancer; but it appears to have been an unknown territory for most.

4. Almost half had a Prostate cancer test as part of a general check-up 46% As a result of a General check-up 29% I had concerns about symptoms andmy GP suggested a test

5. Almost two thirds felt the implications of Prostate cancer were not clearly explained % Not clearly explained Clearly explained HOWEVER, There are signs of improvement among more recently diagnosed, with 1/3 saying it was clearly outlined.

6. Half received their diagnosis alone, and of these, one third did not make a conscious decision to do so. • 50% had no family/ friends present when received diagnosis. • 16% said it was not a personal decision to receive results alone, while 20% didn't realise they would be receiving their results at that time. • ¼ felt their diagnosis was given to them with poor sensitivity. 56% Good sensitivity 25% No/Poor Sensitivity

7. One in five claim to have been given no additional information about Prostate cancer at time of diagnosis, but this has declined over time. One in five given a chance to speak to a nurse Additional information given about Prostate cancer% Pre 2004 2005-2008 2009-2011 I was given written information (e.g. leaflets, brochures, print outs) 42% 53% 69% I was given a contact and telephone number at the hospital in case I had any concerns I was given a chance to speak to a nurse I was given a Helpline number of another source (such as the National Cancer Helpline) I was given information about a support group 33% 19% 10% I was given no additional information High Amongst: Other “I was lucky in choosing surgery-but to be given a choice , (which most are not qualified to make) , between surgery or radiotherapy is wrong for any man!! to decide” Conn/Ulster 21% “I was given a DVD on operation procedure” “I was given information by my consultant and given phone numbers where different types of treatments were available and told to talk to each consultant and make an informed decision with their help as to the form of treatment I wished to have” Munster 26%

8. Almost half had only one party involved in the treatment decision Number of parties involved in making treatment decisions 1 2 3 4 % 6% 11% Urologist Radiation Oncologist Specialist Nurse 33% Medical Oncologist 48%

9. Just under 3 in 10 were given the opportunity to speak with someone from the Irish Cancer Society National Cancer Helpline, although the trend is upwards No% Yes% 2005-2008 2009-2011 Pre 2004 66% 58% A radiation oncologist 52% 55% 37% Another consultant 36% 35% The Irish Cancer Society National Cancer Helpline 32% 13% 28% A man who has had this disease or treatment 22% 13%

10. 8 in 10 feel their treatment options were clearly outlined and three quarters felt that side effects were clearly communicated • 81% agreed that the treatment options were clearly outlined to them, while 1 in 5 declared that they were not given any treatment options. • ¾’sagreed that the side effects were clearly outlined, while 1 in 4 found the side effects were not clearly outlined. Clearly Outlined 88% 2009-2011 81% 2005-2008 73% pre 2004 Clearly Outlined 84% 2009-2011 74% 2005-2008 63% pre 2004

11. Six in ten felt the level of support received was good; however 1 in 5 report receiving poor support 60% Good support 21% Poor support

12. 9 in 10 received “active” treatment when first diagnosed with Prostate cancer and most men had more than one treatment Number of treatments needed in total % Surgery to remove the prostate 1 2 3 4 5 6 3% Radiotherapy 4% Any active treatment: 89% 12% 12% Hormone therapy 28% Brachytherapy Active Surveillance Monitoring: 15% Watchful waiting 42% Other None of these

13. Over three quarters of men have experienced urinary/bowel or sexual side effects following treatments to date Side effects experienced% 76% Any urinary/bowl side effects Impotency Loss of libido Fatigue (extreme tiredness) Leaking of urine Frequency of passing urine Hot flushes 78% Any sexual side effects Problems with bowel motion Weight gain Depression Gynaecomastia (enlargement of breast tissue)

14. Awareness and severity of side effects compared to expectations Awareness of the possibility of side effects prior to beginning treatment Experienced some unexpected side effects Worst than expected on most side effects 27% 50%+ Not Aware % Aware% A lot worse than expected% A little bit worse than expected % Impotency Leaking of urine Depression Frequency of passing urine Impotency Loss of libido Problems with bowel motion Fatigue (extreme tiredness) Hot flushes Problems with bowel motion Loss of libido Hot flushes Leaking of urine Depression Fatigue (extreme tiredness) Gynaecomastia (enlargement of breast tissue) Frequency of passing urine Weight gain Weight gain Gynaecomastia (enlargement of breast tissue)

15. Support received from professionals to help with sideaffects 48% Urologist 35% Radiation Oncologist 35% Specialist Nurse 21% Medical Oncologist 13% Local Support Group

16. Evidence of higher levels of physical preparation than emotional for side effects 59% Physically prepared 45% Emotionally prepared

17. Rating of information and support provided at stages varies Information Support At the time of PSA testing At the time of PSA testing At the time of biopsy At the time of biopsy At the time of diagnosis At the time of diagnosis When deciding treatment When deciding treatment During treatment During treatment After treatment After treatment When you had side effects to treatment When you had side effects to treatment

18. Effects of Prostate cancer on relationship No% Yes% Ended sexual relations Prevented intimacy Any of these effects Created tension 56% Caused estrangement Has made it stronger Has not affected it at all

19. Impact of diagnosis on work • 77% working when diagnosed • 1-3 months time taken off • ¼ Experienced financial difficulty: • 53% Loss of earnings • 50% cost of travel going for treatment • 48% cost of medication • 47% cost of treatment

20. Survey among men who have had Prostate Cancer Media Briefing: 30th September 2011