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

2. 2. Background Research was conducted in 30 th May -10 th 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. 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. 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 What? How? When? Why?

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

5. 5. Clearly explained Not clearly explained % Almost two thirds felt the implications of Prostate cancer were not clearly explained Those diagnosed from 2009-11 33% There are signs of improvement among more recently diagnosed, with 1/3 saying it was clearly outlined. HOWEVER,

6. 6. Half received their diagnosis alone, and of these, one third did not make a conscious decision to do so. No/Poor Sensitivity Good sensitivity 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% 25%

7. 7. “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” 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 % I was given written information (e.g. leaflets, brochures, print outs) I was given a Helpline number of another source (such as the National Cancer Helpline) I was given a chance to speak to a nurse I was given a contact and telephone number at the hospital in case I had any concerns I was given information about a support group I was given no additional information “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” “I was given a DVD on operation procedure” Munster 26% Conn/Ulster 21% 42%53%69% 33%19%10% High Amongst: Other Pre 20042005-20082009-2011

8. 8. Almost half had only one party involved in the treatment decision % Urologist Medical Oncologist Specialist Nurse Radiation Oncologist Number of parties involved in making treatment decisions 48% 33% 11% 6% 1234

9. 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 Another consultant A radiation oncologist A man who has had this disease or treatment The Irish Cancer Society National Cancer Helpline No % Yes % 58% 52% 66% Pre 2004 2005-20082009-2011 36% 37% 55% 13% 32% 35% 13% 22% 28%

10. 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 ’s agreed that the side effects were clearly outlined, while 1 in 4 found the side effects were not clearly outlined. 73% pre 2004 81% 2005-2008 88% 2009-2011 63% pre 2004 74% 2005-2008 84% 2009-2011 Clearly Outlined

11. 11. Six in ten felt the level of support received was good; however 1 in 5 report receiving poor support Good support Treatment options not clearly outlined63% Side effects not clearly outlined44% 60% Poor support 21%

12. 12. 9 in 10 received “active” treatment when first diagnosed with Prostate cancer and most men had more than one treatment % Surgery to remove the prostate Active Surveillance Brachytherapy Watchful waiting Other Radiotherapy None of these Hormone therapy Any active treatment: 89% Monitoring: 15% 42% 12% 4% 3% 2456 28% 3 12% 1 Number of treatments needed in total

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

14. 14. Awareness and severity of side effects compared to expectations Worst than expected on most side effects 50%+ Fatigue (extreme tiredness) Leaking of urine Frequency of passing urine Problems with bowel motion Impotency Loss of libido Depression Gynaecomastia (enlargement of breast tissue) Hot flushes Weight gain Base #(43) (137) (61) (69) (125) (109) (112) (107) (53) #(31) A lot worse than expected % A little bit worse than expected % Not Aware % Fatigue (extreme tiredness) Leaking of urine Frequency of passing urine Problems with bowel motion Impotency Loss of libido Depression Gynaecomastia (enlargement of breast tissue) Hot flushes Weight gain Awareness of the possibility of side effects prior to beginning treatment Experienced some unexpected side effects 27%

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

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

17. 17. Rating of information and support provided at stages varies At the time of PSA testing At the time of biopsy At the time of diagnosis When deciding treatment During treatment After treatment When you had side effects to treatment Adequate % Inadequate % 5921 6321 6618 6617 7110 6115 4420 Adequate % Inadequate % 5524 5826 5924 6221 6912 5819 4519 At the time of PSA testing At the time of biopsy At the time of diagnosis When deciding treatment During treatment After treatment When you had side effects to treatment InformationSupport

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

19. 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: 30 th September 2011