Nordic Prostate Cancer Report 2014 International/Nordic report

Transcription

1 Nordic Prostate Cancer Report 2014 International/Nordic report 6

2 Table of contents Introduction... 7 Foreword by the experts... 8 About the study and the respondents DIAGNOSIS Have you been diagnosed with prostate cancer? How long ago where you diagnosed? At which stage is your prostate cancer today? Collectively: Did you know that the following symptoms can be signs of prostate cancer? Blood in the urine Blood in the semen Difficulty in passing urine Incontinence (bladder dysfunction) Back pain Collectively: How was your prostate cancer detected? Random visit to a doctor for other reasons At an ordinary health check where the doctor asked whether there was prostate cancer in my family At an ordinary health check where the doctor asked whether I experienced prostate-cancer related symptoms At an ordinary health check where the doctor examined the prostate and checked my PSA level I experienced symptoms and saw my GP Who was instrumental in your decision to see a doctor after you suspected prostate cancer? Have there been other incidents of prostate cancer in your family? Page 2 of 121

3 8. Did you know that prostate cancer may be hereditary? What was your first reaction when you were diagnosed with prostate cancer? TREATMENT Do you agree or disagree with the following statements concerning treatment? I received a satisfactory explanation of the disease and its treatment from my doctor/healthcare professionals when I was diagnosed I prefer that my doctor decides which treatment is best for me I prefer to discuss therapeutic options with my doctor and that the decision is made jointly I have been informed about new research and new therapeutic options by my doctor/the healthcare professionals I have acquired knowledge about prostate cancer on my own I consider myself to be well-informed about prostate cancer I would like to have more information about prostate cancer I have an influence on the choice of therapeutic treatment I have no influence on the choice of therapeutic treatment In the course of my treatment I met a considerable number of attending doctors, which constituted a problem In the course of my treatment I met a considerable number of attending doctors, but this did not constitute a problem In the course of my treatment I only met few attending doctors, which constituted a problem In the course of my treatment I only met few attending doctors, but this did not constituted a problem Do you agree with the following statement? I'm aware that I'm entitled to a second medical opinion concerning my therapeutic options I obtained a second medical opinion concerning my therapeutic options Which therapy are you currently undergoing? Are you satisfied with your therapy or your decision not to receive treatment? Which therapy have you previously received? Have you been satisfied with your therapy or your decision not to receive treatment? Have you experienced being ineligible for any therapy? Why were you ineligible for this therapy? Page 3 of 121

4 18. To which degree did the therapy exert a negative influence on your quality of life? Did you experience any of the following adverse effects as a result of the prostate- cancer therapy? LIFE WITH PROSTATE CANCER Collectively: How has your outlook on life changed since you were diagnosed with prostate cancer? Now every single extra day counts I feel alone with my disease I spend more time with family and friends than before I was diagnosed I think more about death I think more about what will happen to my family when I'm no longer here I think more about living in the moment and enjoying life while I can still do so I think more about acting out my dreams while I can still do so I'm no longer capable of enjoying life the way I used to My outlook on life has not changed since I was diagnosed How do you see your future? Do you agree/disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? I feel I'm coping well with my disease I feel prepared to live with prostate cancer for the rest of my life I find it difficult to concentrate I feel restless I suffer from insomnia I feel overcome by my disease I'm nervous I feel that I've lost part of my virility In spite of taking painkillers, I'm in pain I don't have much energy I fear that my condition will deteriorate Page 4 of 121

5 I'm losing hope in my fight against the disease I'm afraid to die I feel upset Do you agree or disagree with the following statements concerning your well-being, as to social and family relations, since you were diagnosed with prostate cancer? My family supports me emotionally My friends support me emotionally I'm satisfied with the way in which I communicate with my family about my disease I feel my relationship with my partner/wife has become closer I feel less close to my partner/wife The disease has exerted a negative influence on my family I feel I have a shorter fuse and that I'm more hot-tempered than before I became ill With whom, other than your doctor, do/did you mainly discuss your disease? SEX LIFE Collectively: Problems experienced after having received treatment for prostate cancer? The ability to get an erection The ability to get an orgasm The ability to function sexually I was no longer sexually active when I began treatment Do you agree or disagree with the following statements concerning your sex life after having received prostate-cancer therapy? I'm satisfied with my sex life I consider my absent desire for sex to be a major problem I'm frustrated by my absent desire for sex I'm worried that my absent desire is frustrating to my partner/wife Page 5 of 121

6 INFORMATION AND GUIDANCE From where do you get information about prostate cancer? Do you need information about the following? Would you be interested in receiving s concerning the study results from the survey and information about the treatment of prostate cancer? Are you a member of a patients association? DEMOGRAPHIC QUESTIONS What is your occupation? What is your marital status? Do you have children? In which country were you born? Page 6 of 121

7 Introduction Every year, more than 22,000 men in the Nordic countries are diagnosed with prostate cancer. It is the most common cancer in men, and more than 177,000 men in the Nordic countries live with this disease. Prostate cancer is cancer of the prostate gland located below the bladder. The etiology of prostate cancer is not entirely known, but if the cancer is detected early, recovery is possible. Not all prostate cancer patients need treatment, however. The Nordic patient survey, commissioned by the pharmaceutical company Astellas Nordic, was conducted in cooperation with Danish, Finnish, Norwegian and Swedish patients associations assisted by the communications and research agency Kompas Kommunikation. The study results will be used in a Nordic information campaign on prostate cancer, which will concentrate on patients, treatment options and quality of life. Enjoy your reading. Page 7 of 121

8 Foreword by the experts Page 8 of 121

9 About the study and the respondents This study, conducted by Kompas Kommunikation in cooperation with the prostate-patients associations in Denmark (Prostatakræftforeningen PROPA), Finland (Suomen Eturauhassyöpäyhdistys ry), Norway (Prostatakreftforeningen PROFO) and Sweden (Prostatacancerfürbundet) together with leading medical experts within prostate-cancer research: Michael Borre (Denmark), Antti Rannikko (Finland), Sophie Fosså (Norway) and Göran Ahlgren (Sweden). The study, completed between September 2013 and April 2014, has been sponsored by Astellas Nordic. 6,916 respondents from Denmark (1,784), Finland (1,106), Norway (1,222) and Sweden (2,804) participated. All respondents were diagnosed with prostate cancer. The respondents were recruited via online banners on the websites of the Danish, Finnish, Norwegian and Swedish patients associations and via letters and e- mails sent directly to members of the respective patients associations. Further, respondents were recruited via paper-based questionnaires available in hospitals and clinics in the four countries and generally handed out at meetings within the framework of the patients associations. Finally, in Sweden, respondents were also recruited via the online respondent-recruitment network, Smartresponse. With respect to a few of the questions, we observed variations between respondents participating via the online survey and the respondents participating via the paper-based questionnaires. Since the Finnish survey contains a more extensive number of responses via paper-based questionnaires, the results for certain questions should be treated with some reservation as regards variations between Finnish respondents and the other three nationalities. Thus, in connection with question 2, it appears that as compared with respondents from the other Nordic countries the average time that Finnish respondents have been diagnosed with prostate cancer is considerable longer. Also, the mean age of respondents recruited via paper-based questionnaires is higher (72.7 ) than the mean age of respondents using the online option (68 ). Kompas Kommunikation has adjusted the collected data for the purpose of ensuring the validity of the results. Thus, this adjustment entailed the removal of respondents giving invalid responses; and, likewise, any superfluous responses from respondents participating in the survey more than once were removed. All tables list the number of respondent answers as a total. Not all respondents answered all questions. However, any respondents having answered less than 20% of the survey's principal questions were removed on the basis of the overall assessment of the data validity. This report contains the answers from all four Scandinavian countries 41% of respondents are Swedish, 26% are Danish, 18% are Norwegian and 16% are Finnish. Age-wise, 8% of the respondents are below 60, 37% are between 60 and 69, whereas 55% of the respondents are 70 or older. The survey comprises respondents who are members of a patients association (PROPA/PROPO/PROFO/Prostatacancerfürbundet/other) (86%) and respondents who are not (14%). A comparison has been made between the responses of the two groups, and there was no noticeable variation. In tables and graphs, all percentages have been rounded off and listed without decimals, which is the reason why not all tables and graphs state sums at 100 percent. Page 9 of 121

10 About the study and the respondents Country code Number Per cent Denmark 26% Denmark 1,784 26% Finland 16% Finland 1,106 16% Norway 1,222 18% Norway 18% Sweden 2,804 41% Total 6, % Sweden 41% Age groups Number Per cent 8% 521 8% 37% 2,353 37% 2,793 44% 44% % Total 6, % % Page 10 of 121

11 This section comprises the most significant conclusions drawn from the Nordic survey among prostate-cancer patients performed in Denmark, Norway, Sweden and Finland from the autumn 2013 to the spring of Diagnosis A significant number of the Nordic prostate-cancer patients are not familiar with the typical symptoms of prostate cancer. Many are not aware that back pain (55%), blood in the semen (44%), blood in the urine (39%), incontinence (32%) and difficulty in passing urine (16%) may be symptoms of the disease. Differences among the countries can, however, be detected. Thus, 27% of the Finnish respondents are not aware that blood in the urine is a symptom of prostate cancer, whereas it is almost half of the Swedes (47%) who are not aware of this. On the other hand, more than 4 out of 10 (44%) of the Finnish respondents know about back pain as a symptom of the disease, while this is only the case for every fifth (22%) of the Danish respondents. Frequently, prostate cancer is detected by pure chance. Half the patients (49%) detected their prostate cancer by chance in connection with a visit to their GP for other reasons; whereas slightly fewer (41%) detected the disease because they experienced symptoms which made them seek medical advice. Most Finnish respondents detected the disease by pure chance (57%); and, similarly; the Finns rank highest when it comes to detect symptoms and seek subsequent medical assistance (49%). More than 4 out of 10 (44%) of the patients are not aware that prostate cancer may be hereditary. Most Swedish respondents are aware of this (61%) and fewest Norwegian (47%). Collectively, 3 out of 10 (29%) have experienced previous cases of prostate cancer in their family, while an equal number (29%) have no knowledge as to whether there have been previous cases of prostate cancer in their family. In this connection, the variation among the four countries is only minor. The diagnose prostate cancer is received with mixed feelings. For half the Nordic respondents (48%), the initial reaction was a determination to fight and conquer the disease. However, many (32%) reacted by becoming sad, and a large number (38%) feared the subsequent proceedings. There are, however, a number of variations among the countries. Thus, 4 out of 10 (42%) of the Danish respondents reacted by becoming sad, whereas this only applied to every fifth (21%) of the Finnish respondents. Treatment In general, the Nordic prostate-cancer patients feel well-informed about their disease. 3 out of 4 (77%) state that, when diagnosed, the explanation they received about prostate cancer and its treatment from their doctor/the healthcare professionals was satisfactory. A similar number (76%) feel well-informed about the disease. However, 4 out of 10 (36%) have not received information about new research and new therapeutic options from their doctor/the healthcare professionals. This is especially the case for the Swedish respondents (39%) and to the least extent for the Finns (23%). At the same time, many of Page 11 of 121

12 the Nordic respondents (68%) would like to have further information about the disease. In Sweden, the interest in additional disease information is quite large (80%), whereas, for Denmark, it is somewhat lower (56%). The Nordic patients like to be involved and have a say in connection with their therapy. By far the most (88%) prefer to discuss therapeutic options with their doctor and, subsequently, make a joint decision concerning their therapy. In this respect, there are only quite slight variations among the countries. Collectively, every fourth patient (23%) experiences the fact of having met many different medical practitioners in the course of their disease, as problematic. This is especially the case for the Danish respondents (33%), whereas this issue is significantly less important in Sweden (15%). 7 out of 10 (71%) of the Nordic respondents are aware that they are entitled to hear another doctor's opinion about their treatment options, whereas every fifth (18%) are not aware of this option. The highest number of patients (75%), aware of this option, are Swedes; whereas the lowest number is constituted by Danes (64%). Collectively, 30% received a second doctor's opinion concerning their treatment options; and, in this respect, the variation among the countries only amounts to a few percent. More than half the Nordic prostate-cancer patients experience their therapy to exert a negative influence on their quality of life only to a lesser degree (46%) or not at all (9%), while 38% experience the negative influence to a high (30%) or very high degree (8%). Collectively, the least affected patients are the Finns, where only 30% feels that their therapy has had a negative influence on their quality of life; whereas the Norwegians are the most affected (48%). The Nordic patients do, however, experience considerable side effects in connection with their prostate-cancer therapy. Erectile dysfunction is the most frequently experienced side effect (80%). This is followed by incontinence (38%), fatigue (31%), and hot flushes (29%). Every fifth (22%) has experienced the development of breasts or impaired muscular strength (21%) as a result of the therapy; whereas a little lower number of respondents have experienced weight gain (16%), insomnia (14%), depression (13%) or faecal incontinence (11%). As to side effects from the therapy, there are only slight variations among the countries. Life with prostate cancer After being diagnosed with prostate cancer, a significant number of the Nordic prostate-cancer patients has developed a more positive outlook on life. Thus, 2 out of 3 (67%) think more about living in the moment and enjoy life while they can still do so. This applies to most Finnish respondents (73%), and to fewest Norwegians (56%). Collectively, a little less than half the respondents (46%) think more about acting out their dreams; and for 4 out of 10 (40%) every single extra day counts. However, some respondents think more about death (33%) and about what will happen to their family when they are no longer here (36%). Most Danes (40%) think about what will happen to their family, whereas the Finns seem to be the least worried in this respect (28%). In general, the Nordic patients feel well equipped. As many as 9 out of 10 (87%) believe that they handle their disease well; and 7 out of 10 (72%) feel prepared to live with prostate cancer for the rest of their lives. Page 12 of 121

13 But the disease afflicts virility in all countries. Collectively, 6 out of 10 (63%) feel that they have lost part of their virility after being diagnosed with prostate cancer. Family and relatives play an important role for the Nordic patients. Almost 9 out of 10 (85%) receive emotional support from their family, while 7 out of 10 (71%) find support from their friends. At the same time, half the respondents (51%) feel that their relationship with their partner/wife has grown closer after being diagnosed with prostate cancer. This applies to most Danish respondents (56%) and to fewest in Norway (46%). Collectively, almost 9 out of 10 (85%) mainly discuss their disease with their partner/wife apart from their doctor; and, likewise, their children also play an important role as conversation partners (48%). Other than these parties, however, there is considerable variation as to with whom the patients in the different countries mainly prefer to discuss their disease. Thus, half (50%) of the Finnish respondents mainly discuss their disease with other prostate-cancer patients, while this only applies to every fourth (23%) of the Danish respondents. Sex life Prostate-cancer therapy afflicts the sex life of the patients. 6 out of 10 (60%) of the Nordic prostate-cancer patients are dissatisfied with their sex life; and 9 out of 10 (87%) have experienced problems with the ability to get an erection after having received prostate-cancer therapy. Similarly, many have experienced problems with respect to functioning sexually (79%) and getting an orgasm (71%). At the same time, a large number (33-39%) consider the loss of sexual desire to be frustrating or to constitute a major problem; or they are worried that this also frustrates their partner/wife. As to the questions focused on sex life, there are only slight variations among the countries. Information and counselling 68% of the Nordic patients get information from their patients association. Most probably, this is attributable to the fact that most of the survey respondents (86%) are members of a patients association. Furthermore, 48% get information from a urologist, 40% from the internet and 34% from a hospital doctor. A considerable number, however, also obtain information from their GP (29%), from information leaflets (27%) or from other prostate-cancer patients (25%). However, the sources of information vary considerably from country to country. Thus, 6 out of 10 (57%) of the Swedish respondents get information from a urologist; whereas this only applies to one third (33%) of the Danish respondents. On the other hand, half the Danish get information from a hospital doctor, while it is only 1 out of 6 (17%) of the Finnish respondents. Instead, 6 out of 10 (60%) of the Finns get information from their GP in contrast to only 3 out of 10 (28%) of the Danish respondents. Page 13 of 121

14 DIAGNOSIS Page 14 of 121

15 1. Have you been diagnosed with prostate cancer? Have you been diagnosed with prostate cancer? (Tick the appropriate box). In total, 98% of the 6,916 respondents were diagnosed with prostate cancer. Respondents having answered 'no' were removed from the study. Yes 98% No 0% 2% Have you been diagnosed with prostate cancer? (Tick the appropriate box). Total Denmark Finland Norway Sweden 80+ Yes 98% 100% 99% 100% 97% 94% 99% 99% 99% No 0% 0% 0% 0% 0% 0% 0% 0% 0% 2% 0% 1% 0% 3% 6% 1% 1% 1% Total 6,916 1,784 1,106 1,222 2, ,340 2, Page 15 of 121

16 2. How long ago were you diagnosed? On the date of the conduction of the survey, the respondents had, on average, been diagnosed with prostate cancer for 5 11 months. It should be noted, however, that the average figure vary from country to country: Denmark: 4 9 months Finland: 8 4 months Norway: 5 10 months Sweden: 5 9 months How long ago where you diagnosed? State months or, as near as you can tell. Total Denmark Finland Norway Sweden 80+ Average (months) , Total 6,058 1, ,041 2, ,260 2, Page 16 of 121

17 3. At which stage is your prostate cancer today? At which stage is your prostate cancer today? (Tick the appropriate box). 44% of all survey respondents state that, after therapy, their PSA levels are normal. 34% state that their cancer is limited to the prostate gland. 29% state that, after therapy, there is no trace of prostate cancer cells; and 16% state that, according to their doctor, there are no cancer cells left. On the other hand, 13% of the respondents state that the cancer has spread to areas outside the prostate gland. After therapy, my PSA level is normal The cancer is limited to the prostate gland After therapy, there is no trace of prostate cancer cells My doctor tells me that there are no cancer cells left The cancer has spread to areas outside the prostate gland 13% 16% 29% 34% 44% In 7% of the respondents, the cancer has spread to the bone tissue. The cancer has spread to the bone tissue 7% 6% state that their PSA level is high, but the cancer cells' location is not known. My PSA level is high, but the cancer- cells location is not known 6% In 6% of the respondents, the cancer has spread to the lymph nodes; and in 2% the cancer has spread elsewhere in the body. There are minor variations between the countries the most significant is seen in Finland where 33% of the respondents have been told by their doctor that there is no trace of cancer cells. This figure is considerably higher than in the other countries where the figure is between 12% and 16%. The cancer has spread to the lymph nodes The cancer has spread to other places in the body Other 6% 2% 3% 5% Please see the table on the following page. Page 17 of 121

18 At which stage is your prostate cancer today? (Tick the appropriate box). Total Denmark Finland Norway Sweden 80+ After therapy, my PSA level is normal 44% 38% 48% 46% 45% 36% 41% 47% 46% The cancer is limited to the prostate gland 34% 36% 40% 33% 31% 32% 29% 33% 51% After therapy, there is no trace of prostate cancer cells 29% 28% 33% 31% 27% 32% 33% 29% 17% My doctor tells me that there are no cancer cells left The cancer has spread to areas outside the prostate gland 16% 12% 33% 16% 12% 15% 17% 15% 13% 13% 20% 12% 13% 10% 13% 14% 14% 9% The cancer has spread to the bone tissue 7% 12% 5% 9% 5% 7% 7% 7% 8% My PSA level is high, but the cancer- cells location is not known 6% 6% 6% 6% 6% 6% 4% 6% 10% The cancer has spread to the lymph nodes 6% 10% 4% 7% 3% 6% 7% 6% 2% The cancer has spread to other places in the body 2% 2% 1% 2% 1% 2% 1% 2% 2% Other 3% 2% 4% 1% 3% 4% 3% 2% 1% 5% 4% 5% 6% 7% 5% 3% 6% 13% Total 6,275 1,665 1,006 1,078 2, ,301 2, * Basis: All respondents having answered Page 18 of 121

19 4. Collectively: Did you know that the following symptoms can be signs of prostate cancer? Collectively: Did you know that the following symptoms can be signs of prostate cancer? (Percentages answering 'No' to having knowledge about the following signs) A considerable number of the respondents have no knowledge of the most important symptoms of prostate cancer: Backpain 55% 55% do not know that back pain can be a sign of prostate cancer. 44% do not know that blood in the semen can be a sign of prostate cancer. 39% do not know that blood in the urine can be a sign of prostate cancer, and 32% do not know that incontinence is a sign of prostate-cancer symptom. 16% do not know that difficulty in passing urine can be a sign of prostate cancer. Blood in semen Blood in urine Incontinence (bladder dysfunct.) 32% 39% 44% Difficulty in passing urine 16% Page 19 of 121

20 4.1. Blood in the urine Did you know that the following symptoms can be signs of prostate cancer? (Respond to each statement). Blood in the urine. 52% of the respondents know that blood in the urine can be a sign of prostate cancer, whereas 39% are not aware of this. Finland has the highest score in this respect, as 64% know that blood in the urine can be a sign of prostate cancer, whereas Sweden has the lowest score, with 42%. Yes 52% No 39% 8% Did you know that the following symptoms can be signs of prostate cancer? (Respond to each statement). Blood in the urine. Total Denmark Finland Norway Sweden 80+ Yes 52% 61% 64% 53% 42% 57% 52% 52% 54% No 39% 34% 27% 40% 47% 35% 40% 40% 36% 8% 5% 9% 7% 11% 8% 8% 8% 9% Total 5,900 1, ,017 2, ,250 2, Page 20 of 121

21 4.2. Blood in the semen Did you know that the following symptoms can be signs of prostate cancer? (Respond to each statement). Blood in the semen. 44% of the respondents know that blood in the semen can be a sign of prostate cancer, whereas a similar number of respondents are not aware of this. Denmark and Finland score the highest, with 53% who know about blood in the semen as a sign of prostate cancer. Sweden has the lowest score, with 36%. Yes No 44% 44% 12% Did you know that the following symptoms can be signs of prostate cancer? (Respond to each statement). Blood in the semen. Total Denmark Finland Norway Sweden 80+ Yes 44% 53% 53% 41% 36% 49% 45% 44% 41% No 44% 39% 33% 46% 51% 42% 45% 44% 42% 12% 8% 15% 13% 14% 9% 11% 12% 17% Total 5,804 1, ,001 2, ,235 2, Page 21 of 121

22 4.3. Difficulty in passing urine Did you know that the following symptoms can be signs of prostate cancer? (Respond to each statement). Difficulty in passing urine. 81% of the respondents know that difficulty in passing urine can be a sign of prostate cancer, whereas 16% are not aware of this. With 84% knowing that difficulty in passing urine can be a symptom of prostate cancer, Finland and Sweden have the highest score, whereas Denmark has the lowest score with 72%. Yes No 16% 81% 3% Did you know that the following symptoms can be signs of prostate cancer? (Respond to each statement). Difficulty in passing urine. Total Denmark Finland Norway Sweden 80+ Yes 81% 72% 84% 83% 84% 85% 82% 80% 78% No 16% 24% 12% 14% 14% 13% 15% 16% 19% 3% 4% 4% 3% 3% 2% 3% 4% 3% Total 6,117 1, ,047 2, ,293 2, Page 22 of 121

23 4.4. Incontinence (bladder dysfunction) Did you know that the following symptoms can be signs of prostate cancer? (Respond to each statement). Incontinence (bladder dysfunct.). 59% of the respondents know that incontinence can be a sign of prostate cancer, whereas 32% are not aware of this. In Denmark, Norway and Sweden 60% of the respondents are aware that incontinence can be a symptom of prostate cancer, whereas the percentage in Finland is 56%. Yes No 32% 59% 9% Did you know that the following symptoms can be signs of prostate cancer? (Respond to each statement). Incontinence (bladder dysfunction). Total Denmark Finland Norway Sweden 80+ Yes 59% 60% 56% 60% 60% 63% 61% 58% 54% No 32% 34% 31% 32% 32% 29% 31% 32% 35% 9% 7% 13% 8% 9% 8% 8% 9% 10% Total 5,820 1, , ,237 2, Page 23 of 121

24 4.5. Back pain Did you know that the following symptoms can be signs of prostate cancer? (Respond to each statement). Back pain. 34% of the respondents know that back pain can be a sign of prostate cancer, whereas 55% are not aware of this. Finland has the highest score with 44%, of respondents being aware that back pain can be a sign of prostate cancer, whereas Denmark has the lowest score with 22%. Yes No 34% 55% 11% Did you know that the following symptoms can be signs of prostate cancer? (Respond to each statement). Back pain. Total Denmark Finland Norway Sweden 80+ Yes 34% 22% 44% 38% 38% 41% 34% 34% 34% No 55% 69% 43% 53% 51% 52% 57% 55% 52% 11% 9% 13% 9% 11% 7% 9% 11% 15% Total 5,859 1, , ,235 2, Page 24 of 121

25 5. Collectively: How was your prostate cancer detected? Collectively: How was your prostate cancer detected? (Percentages having answered 'Yes' to the following options) 59% detected their prostate cancer at an ordinary health check where the doctor examined the prostate and checked their PSA level The prostate cancer of 49% of the respondents was detected at a random visit to a doctor for other reasons. 41% experienced symptoms and saw their GP, whereas 11% detected the disease at an ordinary health check where the doctor asked whether there was prostate cancer in the family. At an ordinary health check where the doctor examined my the prostate and checked my PSA level Random visit to a doctor for other reasons I experienced symptoms and saw my GP 41% 49% 59% 9% detected the disease at an ordinary health check where the doctor asked whether they had experienced prostate-cancer related symptoms. At an ordinary health check where the doctor asked whether there was prostate cancer in my family At an ordinary health check where the doctor asked whether I experienced prostate-cancer related symptoms 11% 9% Page 25 of 121

26 5.1. Random visit to a doctor for other reasons How was your prostate cancer detected? (Respond to each statement). Random visit to a doctor for other reasons. The prostate cancer of 49% of the respondents was detected at a random visit to their GP for other reasons. With 57%, the Finnish number is significantly higher than the other countries, scoring between 47% and 49%. Yes No 49% 50% 1% How was your prostate cancer detected? (Respond to each statement). Random visit to a doctor for other reasons. Total Denmark Finland Norway Sweden 80+ Yes 49% 47% 57% 49% 49% 45% 46% 49% 60% No 50% 52% 42% 50% 50% 54% 54% 49% 38% 1% 1% 1% 1% 1% 0% 1% 1% 2% Total 4,995 1, , ,941 2, Page 26 of 121

27 5.2. At an ordinary health check where the doctor asked whether there was prostate cancer in my family How was your prostate cancer detected? (Respond to each statement). At an ordinary health check where the doctor asked whether there was prostate cancer in my family. The prostate cancer of 11% of the respondents was detected at an ordinary health check where the doctor asked whether there was prostate cancer in the family. With 14%, Sweden scores the highest percentage in this respect, whereas Denmark scores the lowest with 7%. Yes 11% No 87% 2% How was your prostate cancer detected? (Respond to each statement). At an ordinary health check where the doctor asked whether there was prostate cancer in my family. Total Denmark Finland Norway Sweden Yes 11% 7% 12% 11% 14% 9% 9% 12% 12% No 87% 90% 84% 88% 85% 90% 89% 86% 83% 2% 2% 3% 1% 2% 0% 2% 2% 5% Total 4,383 1, , ,773 1, Page 27 of 121

28 5.3. At an ordinary health check where the doctor asked whether I experienced prostate-cancer related symptoms How was your prostate cancer detected? (Respond to each statement). At an ordinary health check where the doctor asked whether I experienced prostate-cancer related symptoms. In 9% of the respondents, the prostate cancer was detected at an ordinary health check where the doctor asked about prostate-cancer-related symptoms. With 16%, Finland scores the highest percentage in this respect, whereas Denmark scores the lowest with 6%. Yes No 9% 89% 2% How was your prostate cancer detected? (Respond to each statement). At an ordinary health check where the doctor asked whether I experienced prostatecancer- related symptoms. Total Denmark Finland Norway Sweden Yes 9% 6% 16% 9% 10% 5% 6% 12% 18% No 89% 92% 80% 89% 88% 94% 92% 87% 78% 2% 2% 4% 2% 2% 1% 2% 2% 4% Total 4,368 1, , ,759 1, Page 28 of 121

29 5.4. At an ordinary health check where the doctor examined the prostate and checked my PSA level How was your prostate cancer detected? (Respond to each statement). At an ordinary health check where the doctor examined the prostate and checked my PSA level. The prostate cancer of 59% of the respondents was detected at an ordinary health check where the doctor examined the prostate and checked the PSA level With 67%, Finland and Norway scores the highest percentage in this respect, whereas - with 43% - Denmark scores considerably lower. Yes No 40% 59% 1% How was your prostate cancer detected? (Respond to each statement). At an ordinary health check where the doctor examined my the prostate and checked my PSA level. Total Denmark Finland Norway Sweden Yes 59% 43% 67% 67% 63% 47% 53% 63% 67% No 40% 55% 33% 33% 36% 52% 47% 36% 32% 1% 2% 0% 1% 1% 1% 1% 1% 2% Total 5,080 1, , ,958 2, Page 29 of 121

30 5.5. I experienced symptoms and saw my GP How was your prostate cancer detected? (Respond to each statement). I experienced symptoms and saw my GP. In 41% of the cases, the prostate cancer was detected because the respondents experienced symptoms and saw their GP. Yes 41% With 49%, Finland scores the highest percentage in this respect, whereas Norway scores the lowest with 33%. No 57% 2% How was your prostate cancer detected? (Respond to each statement). I experienced symptoms and saw my GP. Total Denmark Finland Norway Sweden Yes 41% 45% 49% 33% 39% 35% 36% 44% 54% No 57% 52% 49% 66% 60% 64% 62% 54% 44% 2% 3% 1% 2% 1% 1% 2% 2% 2% Total 4,634 1, , ,828 1, Page 30 of 121

31 6. Who was instrumental in your decision to see a doctor after you suspected prostate cancer? Who was instrumental in your decision to see a doctor after you suspected prostate cancer? (If relevant, tick off more than one box). For 44% of the respondents who suspected prostate cancer, the decision to see a doctor was their own. A similar number answer that they did not suspect prostate cancer and that they saw their GP for another reason when the disease was detected. Hence, no one influenced their decision to see the doctor. After suspecting prostate cancer, 15% of the respondents were encouraged to see a doctor by their partner/wife. I made the decision myself No one - I did not suspect cancer and saw the doctor at a random visit My partner/wife A friend Another family member 3% 2% 15% 44% 44% There are only slight variations among the countries. /don't remember 1% My children 1% A colleague 1% My employer 1% A girl friend 0% My insurance company 0% Other 5% Please see the table on the following page. Page 31 of 121

32 Who was instrumental in your decision to see a doctor after you suspected prostate cancer? (If relevant, tick off more than one box). Total Denmark Finland Norway Sweden 80+ I made the decision myself 44% 42% 49% 39% 45% 38% 42% 46% 46% No one - I did not suspect cancer and saw the doctor at a random visit 44% 43% 42% 49% 42% 48% 44% 42% 43% My partner/wife 15% 17% 16% 12% 15% 15% 15% 15% 14% A friend 3% 4% 3% 3% 3% 1% 4% 3% 4% Another family member 2% 3% 1% 1% 2% 3% 2% 1% 1% /don't remember 1% 1% 1% 1% 1% 0% 1% 1% 4% My children 1% 1% 1% 1% 1% 0% 1% 1% 1% A colleague 1% 1% 1% 1% 1% 0% 1% 1% 1% My employer 1% 0% 1% 1% 1% 1% 1% 0% 0% A girl friend 0% 0% 1% 0% 0% 1% 0% 0% 0% My insurance company 0% 0% 0% 0% 0% 0% 0% 0% 0% Other 5% 4% 7% 4% 6% 7% 6% 5% 7% Total 6,254 1, ,078 2, ,299 2, * Basis: All respondents having answered. Page 32 of 121

33 7. Have there been other incidents of prostate cancer in your family? Have there been other incidents of prostate cancer in your family? (Tick the appropriate box). 29% of the respondents answer that there have been other incidents of prostate cancer in their family. 42% have not experienced incidents of prostate cancer in their family. Yes 29% 29% of the respondents do not know whether there have been other incidents of prostate cancer in their family No 42% There are only slight variations among the countries. 29% Have there been other incidents of prostate cancer in your family? (Tick the appropriate box). Total Denmark Finland Norway Sweden Yes 29% 25% 33% 32% 28% 42% 31% 27% 25% No 42% 39% 39% 39% 47% 37% 40% 43% 46% 29% 35% 28% 28% 25% 21% 29% 30% 30% Total 6,322 1,667 1,016 1,085 2, ,313 2, Page 33 of 121

34 8. Did you know that prostate cancer may be hereditary? Did you know that prostate cancer may be hereditary? (Tick the appropriate box). 56% of the respondents are aware that prostate cancer may be hereditary, whereas 44% are not aware of this. With 61%, Sweden scores the highest percentage, whereas Norway scores lowest with 47%. Yes 56% No 44% Did you know that prostate cancer may be hereditary? (Tick the appropriate box). Total Denmark Finland Norway Sweden Yes 56% 52% 57% 47% 61% 69% 59% 54% 41% No 44% 48% 43% 53% 39% 31% 41% 46% 59% Total 6,314 1,665 1,007 1,086 2, ,313 2, Page 34 of 121

35 9. What was your first reaction when you were diagnosed with prostate cancer? What was your first reaction when you were diagnosed with prostate cancer? (If relevant, tick off more than one box). When diagnosed with prostate cancer, the first reaction of 48% of the respondents was that they were prepared to fight and conquer their disease. When diagnosed, 38% of the respondents were frightened by the subsequent proceedings. I was determined to fight and conquer my disease The subsequent proceedings frightened me I was sad 32% 38% 48% When diagnosed with prostate cancer, the first reaction of 32% of the respondents was to be sad. I was optimistic 23% The first reaction to the diagnosis of 23% of the respondents was to be optimistic, whereas another 18% feared that they were going to die. I was confused 22% 22% felt confused, whereas 18% were relieved to obtain certainty. I feared I was going to die 18% 7% reacted by being angry, whereas 5% remember that, in the beginning, they experienced a state of denial. It was a relief to obtain certainty 18% There are a number of variations among the countries, thus the immediate reaction of 42% of the Danish respondents was to feel sadness, whereas only 21% of the Finns experienced this reaction. I was angry Other reaction 7% 7% I was in a kind of denial 5% Please see the table on the following page. Not relevant in my case 1% 2% Page 35 of 121

36 What was your first reaction when you were diagnosed with prostate cancer? (If relevant, tick off more than one box). Total Denmark Finland Norway Sweden 80+ I was determined to fight and conquer my disease 48% 54% 35% 47% 50% 52% 48% 49% 45% The subsequent proceedings frightened me 38% 40% 33% 39% 38% 54% 39% 36% 31% I was sad 32% 42% 21% 27% 32% 47% 35% 31% 21% I was optimistic 23% 28% 28% 33% 14% 16% 22% 25% 25% I was confused 22% 22% 38% 17% 18% 33% 25% 19% 16% I feared I was going to die 18% 24% 15% 16% 17% 36% 21% 15% 8% It was a relief to obtain certainty 18% 10% 23% 18% 22% 15% 17% 19% 21% I was angry 7% 8% 8% 6% 7% 13% 9% 6% 4% Other reaction 7% 7% 8% 7% 7% 8% 8% 7% 7% I was in a kind of denial 5% 4% 13% 6% 3% 7% 6% 5% 4% Not relevant in my case 1% 0% 0% 1% 1% 1% 0% 1% 1% 2% 2% 2% 1% 2% 1% 2% 1% 3% Total 6,297 1,664 1,010 1,086 2, ,307 2, * Basis: All respondents having answered. Page 36 of 121

37 TREATMENT Page 37 of 121

38 10. Do you agree or disagree with the following statements concerning treatment? I received a satisfactory explanation of the disease and its treatment from my doctor/the healthcare professionals when I was diagnosed Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I received a satisfactory explanation of the disease and its treatment from my doctor/the healthcare professionals when I was diagnosed. 77% of the respondents are of the opinion that, when diagnosed, they received a satisfactory explanation of the disease and its treatment from their doctor/the healthcare professionals. 13% do not feel this to be the case. Disagree very much 5% In general, the respondents express satisfaction and there are only slight variations among the countries. Disagree Neither/ nor 8% 10% Agree 43% Agree very much 34% 1% Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I received a satisfactory explanation of the disease and its treatment from my doctor/the healthcare professionals when I was diagnosed. Total Denmark Finland Norway Sweden Disagree very much 5% 5% 4% 4% 4% 7% 5% 4% 6% Disagree 8% 9% 12% 8% 7% 10% 8% 8% 8% Neither/ nor 10% 13% 11% 8% 9% 10% 9% 10% 11% Agree 43% 39% 48% 51% 40% 39% 41% 43% 49% Agree very much 34% 33% 24% 28% 40% 33% 36% 33% 24% 1% 1% 1% 0% 0% 0% 0% 1% 2% Total 6,155 1, ,055 2, ,285 2, Page 38 of 121

39 10.2. I prefer that my doctor decides which treatment is best for me Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I prefer that my doctor decides which treatment is best for me. 50% of the respondents prefer that their doctor decides which treatment is best for them. 29% do not wish the doctor to make this decision. Disagree very much 8% In Finland most prefer their doctor to make the decision (58%), whereas the nationality with fewest to prefer this solution are the Danes (42%). Disagree Neither/ nor 19% 21% Agree 32% Agree very much 18% 2% Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I prefer that my doctor decides which treatment is best for me. Total Denmark Finland Norway Sweden Disagree very much 8% 10% 5% 5% 10% 9% 10% 7% 6% Disagree 21% 25% 19% 23% 17% 29% 22% 20% 15% Neither/ nor 19% 20% 16% 16% 21% 27% 21% 18% 12% Agree 32% 29% 38% 38% 29% 24% 28% 34% 41% Agree very much 18% 13% 20% 16% 21% 10% 17% 18% 22% 2% 3% 1% 2% 2% 1% 2% 3% 4% Total 6,009 1, ,042 2, ,263 2, Page 39 of 121

40 10.3. I prefer to discuss therapeutic options with my doctor and that the decision is made jointly Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I prefer to discuss therapeutic options with my doctor and that the decision is made jointly. 88% of the respondents prefer to discuss therapeutic options with their doctor and that the decision is made jointly. 5% do not adhere to this strategy. There are only slight variations among the countries. Disagree very much Disagree 2% 3% Neither/ nor 5% Agree 41% Agree very much 47% 2% Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I prefer to discuss therapeutic options with my doctor and that the decision is made jointly. Total Denmark Finland Norway Sweden Disagree very much 2% 3% 1% 1% 1% 1% 2% 2% 3% Disagree 3% 5% 2% 4% 2% 3% 3% 3% 3% Neither/ nor 5% 7% 6% 6% 4% 5% 5% 6% 5% Agree 41% 42% 48% 46% 36% 35% 37% 43% 50% Agree very much 47% 41% 42% 42% 55% 55% 51% 45% 36% 2% 2% 1% 2% 1% 1% 1% 2% 3% Total 6,083 1, ,036 2, ,278 2, Page 40 of 121

41 I have been informed about new research and new therapeutic options by my doctor/the healthcare professionals 41% of the respondents have been informed about new research and new therapeutic options by their doctor/the healthcare professionals. This is not the case for 36% of the respondents. Finland is the country where this holds most true (57%), whereas, with 35%, the percentage is lowest in Sweden. Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I have been informed about new research and new therapeutic options by my doctor/the healthcare professionals. Disagree very much Disagree 14% 22% Neither/ nor 18% Agree 28% Agree very much 13% 6% Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I have been informed about new research and new therapeutic options by my doctor/the healthcare professionals. Total Denmark Finland Norway Sweden Disagree very much 14% 14% 5% 12% 18% 17% 14% 13% 17% Disagree 22% 24% 18% 24% 21% 28% 21% 21% 22% Neither/ nor 18% 19% 14% 20% 19% 16% 19% 19% 15% Agree 28% 28% 41% 29% 22% 23% 28% 28% 28% Agree very much 13% 11% 16% 10% 13% 13% 13% 12% 12% 6% 4% 6% 6% 7% 3% 4% 7% 7% Total 5,923 1, ,018 2, ,253 2, Page 41 of 121

42 10.5. I have acquired knowledge about prostate cancer on my own Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I have acquired knowledge about prostate cancer on my own. 82% of the respondents have acquired knowledge about prostate cancer on their own. For 7% this is not the case. Disagree very much 2% There are only slight variations among the countries. Disagree 5% Neither/ nor 9% Agree 48% Agree very much 34% 2% Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I have acquired knowledge about prostate cancer on my own. Total Denmark Finland Norway Sweden Disagree very much 2% 2% 2% 1% 3% 2% 2% 2% 3% Disagree 5% 3% 5% 6% 5% 3% 5% 5% 6% Neither/ nor 9% 6% 7% 13% 11% 8% 9% 10% 10% Agree 48% 47% 50% 51% 47% 42% 46% 49% 54% Agree very much 34% 41% 36% 27% 32% 46% 37% 32% 24% 2% 2% 2% 2% 2% % 1% 2% 3% Total 5,951 1, ,028 2, ,269 2, Page 42 of 121

43 10.6. I consider myself to be well-informed about prostate cancer Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I consider myself to be wellinformed about prostate cancer. 76% of the respondents consider themselves to be well-informed about prostate cancer, whereas this is not the case for 7%. Disagree very much 2% In general, the respondents from all four countries consider themselves well-informed. There are only slight variations among the countries Disagree 5% Neither/ nor 15% Agree 49% Agree very much 27% 2% Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I consider myself to be well-informed about prostate cancer. Total Denmark Finland Norway Sweden Disagree very much 2% 2% 1% 1% 2% 2% 1% 1% 3% Disagree 5% 4% 6% 6% 5% 7% 4% 5% 5% Neither/ nor 15% 11% 16% 17% 15% 18% 15% 13% 18% Agree 49% 51% 50% 53% 47% 45% 49% 51% 47% Agree very much 27% 31% 21% 21% 30% 28% 29% 27% 21% 2% 1% 6% 3% 2% % 2% 3% 6% Total 6,037 1, ,030 2, ,274 2, Page 43 of 121

44 10.7. I would like to have more information about prostate cancer Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I would like to have more information about prostate cancer. 68% of the respondents would like to have more information about prostate cancer, while 8% consider themselves satisfactorily informed. In this respect, Sweden has the highest score with 80%, whereas Denmark has the lowest with 56%. Disagree very much Disagree 2% 6% Neither/ nor 19% Agree 42% Agree very much 26% 5% Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I would like to have more information about prostate cancer. Total Denmark Finland Norway Sweden Disagree very much 2% 3% 2% 2% 2% 2% 2% 2% 2% Disagree 6% 10% 8% 7% 3% 8% 7% 6% 6% Neither/ nor 19% 26% 23% 25% 11% 22% 22% 18% 12% Agree 42% 37% 44% 43% 43% 33% 38% 43% 51% Agree very much 26% 19% 18% 20% 37% 34% 27% 25% 23% 5% 6% 5% 4% 4% 2% 4% 5% 6% Total 5,936 1, ,012 2, ,259 2, Page 44 of 121

45 10.8. I have an influence on the choice of therapeutic treatment Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I have an influence on the choice of therapeutic treatment. 68% of the respondents feel that they have an influence on the choice of therapeutic treatment, whereas 12% do not believe this to be the case. Disagree very much 4% There are only slight variations among the countries. Disagree 8% Neither/ nor 14% Agree 43% Agree very much 25% 6% Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I have an influence on the choice of therapeutic treatment. Total Denmark Finland Norway Sweden Disagree very much 4% 4% 3% 4% 4% 4% 3% 4% 5% Disagree 8% 10% 8% 11% 6% 7% 8% 8% 12% Neither/ nor 14% 14% 13% 14% 15% 16% 15% 14% 15% Agree 43% 43% 50% 47% 38% 39% 43% 43% 42% Agree very much 25% 25% 21% 20% 28% 31% 27% 23% 15% 6% 4% 6% 4% 9% 4% 4% 8% 10% Total 5,950 1, ,023 2, ,252 2, Page 45 of 121

46 10.9. I have no influence on the choice of therapeutic treatment Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I have no influence on the choice of therapeutic treatment. 17% of the respondents do not believe that they have any influence on the choice of therapeutic treatment. 59% believe the opposite to be the case. Disagree very much 25% There are only slight variations among the countries. Disagree 34% Neither/ nor 16% Agree 11% Agree very much 6% 8% Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). I have no influence on the choice of therapeutic treatment. Total Denmark Finland Norway Sweden Disagree very much 25% 24% 21% 21% 30% 33% 29% 23% 16% Disagree 34% 35% 42% 39% 27% 32% 34% 35% 28% Neither/ nor 16% 15% 13% 16% 17% 17% 17% 15% 17% Agree 11% 13% 11% 13% 9% 7% 9% 13% 17% Agree very much 6% 6% 4% 6% 6% 5% 5% 6% 7% 8% 7% 8% 5% 11% 5% 6% 9% 15% Total 5,820 1, ,004 2, ,232 2, Page 46 of 121

47 In the course of my treatment I met a considerable number of attending doctors, which constituted a problem 23% of the respondents consider it a problem to have met many different attending practitioners in the course of their treatment. Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). In the course of my treatment I met a considerable number of attending doctors, which constituted a problem. Disagree very much 25% In this connection, Denmark has the highest score with 33%, whereas Sweden has the lowest score, with 15%. Disagree 31% Neither/ nor 16% Agree 14% Agree very much 9% 5% Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). In the course of my treatment I met a considerable number of attending doctors, which constituted a problem. Total Denmark Finland Norway Sweden Disagree very much 25% 13% 12% 16% 40% 27% 26% 24% 21% Disagree 31% 31% 31% 38% 29% 30% 31% 32% 29% Neither/ nor 16% 19% 19% 16% 12% 16% 16% 16% 14% Agree 14% 18% 18% 18% 9% 12% 13% 15% 19% Agree very much 9% 15% 7% 8% 6% 12% 10% 9% 8% 5% 5% 13% 4% 3% 2% 4% 5% 8% Total 5,866 1, ,014 2, ,248 2, Page 47 of 121

48 In the course of my treatment I met a considerable number of attending doctors, but this did not constitute a problem 35% of the respondents have met a considerable number of attending practitioners in the course of their treatment, but without considering this to constitute a problem. This is particularly true in Finland (46%) as compared with the other countries (29-37%). Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). In the course of my treatment I met a considerable number of attending doctors, but this did not constitute a problem. Disagree very much Disagree 18% 22% Neither/ nor 19% Agree 25% Agree very much 10% 7% Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). In the course of my treatment I met a considerable number of attending doctors, but this did not constitute a problem. Total Denmark Finland Norway Sweden Disagree very much 18% 14% 7% 12% 28% 28% 21% 15% 14% Disagree 22% 25% 18% 25% 20% 21% 24% 21% 20% Neither/ nor 19% 22% 20% 22% 15% 19% 20% 19% 17% Agree 25% 26% 35% 29% 18% 20% 21% 27% 28% Agree very much 10% 8% 11% 8% 11% 6% 8% 11% 12% 7% 6% 10% 5% 7% 6% 6% 7% 9% Total 5,846 1, ,012 2, ,233 2, Page 48 of 121

49 In the course of my treatment I only met few attending doctors, which constituted a problem Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). In the course of my treatment I only met few attending doctors, which constituted a problem. 10% of the respondents only met few attending practitioners in the course of their treatment, and believe this to have constituted a problem. Disagree very much 27% There are only slight variations among the countries. Disagree 36% Neither/ nor 18% Agree 6% Agree very much 4% 9% Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). In the course of my treatment I only met few attending doctors, which constituted a problem. Total Denmark Finland Norway Sweden Disagree very much 27% 20% 13% 19% 41% 34% 29% 26% 22% Disagree 36% 39% 36% 43% 31% 31% 37% 37% 31% Neither/ nor 18% 23% 23% 20% 12% 19% 19% 18% 18% Agree 6% 6% 8% 9% 5% 5% 5% 6% 13% Agree very much 4% 2% 4% 3% 5% 3% 3% 3% 5% 9% 11% 16% 6% 7% 7% 8% 10% 11% Total 5,774 1, , ,223 2, Page 49 of 121

50 In the course of my treatment I only met few attending doctors, but this did not constituted a problem Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). In the course of my treatment I only met few attending doctors, but this did not constituted a problem. 57% of the respondents only met few attending practitioners in the course of their treatment, but do not consider this to have constituted a problem. In this respect, Denmark scores the lowest percentage 44% - as compared with the percentages (between 52% and 64%) of the other countries. Disagree very much Disagree 7% 11% Neither/ nor 18% Agree 32% Agree very much 25% 8% Do you agree or disagree with the following statements concerning treatment? (Respond to each statement). In the course of my treatment I only met few attending doctors, but this did not constituted a problem. Total Denmark Finland Norway Sweden Disagree very much 7% 8% 3% 7% 9% 11% 7% 7% 7% Disagree 11% 14% 7% 13% 8% 13% 11% 10% 9% Neither/ nor 18% 24% 17% 22% 12% 23% 19% 17% 16% Agree 32% 27% 43% 38% 28% 23% 29% 34% 37% Agree very much 25% 17% 21% 14% 36% 23% 26% 23% 24% 8% 10% 10% 6% 7% 8% 8% 8% 8% Total 5,918 1, ,015 2, ,242 2, Page 50 of 121

51 11. Do you agree with the following statement? I'm aware that I'm entitled to a second medical opinion concerning my therapeutic options Do you agree with the following statement? I'm aware that I'm entitled to a second medical opinion concerning my therapeutic options. 71% of the respondents are aware that they are entitled to a second medical opinion concerning their therapeutic options. 18% are not aware of this option In this respect, Sweden is highest with 75%, whereas Denmark has the lowest score, with 64%. Yes No 18% 71% 11% Do you agree with the following statement? I'm aware that I'm entitled to a second medical opinion concerning my therapeutic options. Total Denmark Finland Norway Sweden 80+ Yes 71% 64% 71% 71% 75% 75% 72% 70% 68% No 18% 27% 12% 22% 14% 18% 18% 18% 21% 11% 9% 18% 8% 11% 7% 10% 12% 10% Total 6,195 1, ,065 2, ,298 2, Page 51 of 121

52 11.2. I obtained a second medical opinion concerning my therapeutic options Do you agree with the following statement? I obtained a second medical opinion concerning my therapeutic options. 30% of the respondents obtained a second medical opinion concerning their therapeutic options. 66% did not use his option. There are only slight variations among the countries. Yes 30% No 66% 5% Do you agree with the following statement? I obtained a second medical opinion concerning my therapeutic options. Total Denmark Finland Norway Sweden 80+ Yes 30% 28% 30% 29% 30% 35% 30% 29% 27% No 66% 68% 64% 68% 65% 62% 66% 67% 67% 5% 4% 6% 4% 5% 2% 4% 5% 6% Total 6,053 1, ,039 2, ,276 2, Page 52 of 121

53 12. Which therapy are you currently undergoing? Which therapy are you currently undergoing G? (If relevant, tick off more than one box). Questioned about the therapy the respondents are currently undergoing, 31% answer that they are under observation. I am under observation (my doctor is monitoring the development of my disease, but without treatment) Operation (with removal of the cancer tissue) 26% 31% 26% answer that they have been operated/are going to be operated. I receive no treatment 25% 23% answer that they are receiving anti-hormone therapy. Anti-hormone therapy (e.g. endocrine therapy) 23% 15% answer that they are receiving radiation therapy. 13% answer that they have been medically castrated. 25% answer that they are not currently receiving treatment. There are significant variations among the countries, thus 24% of the Danes are medically castrated, whereas this only applies to 5% in Finland. Radiation therapy Medical castration (injection of pituitary-gland hormone stimulator or pituitary-gland hormone blocking agent) I have been participating in a scientific research study Chemotherapy Brachytherapy (internal radiation therapy) Pain-management therapy 3% 3% 2% 6% 13% 15% Surgical removal of the testicles (surgical castration/orchiectomy) 2% Alternative medication/treatment (e.g. homeopathy) 2% I have declined to receive treatment 1% Please see the table on the following page. Cryotherapy 0% High-frequency ultrasound 0% Other treatment 4% 1% Page 53 of 121

54 Which therapy are you currently undergoing? (If relevant, tick off more than one box). Total Denmark Finland Norway Sweden 80+ I am under observation (my doctor is monitoring the development of my disease, but without treatment) 31% 21% 42% 22% 35% 20% 27% 33% 34% Operation (with removal of the cancer tissue) 26% 29% 23% 30% 23% 37% 31% 23% 8% I receive no treatment 25% 18% 31% 27% 26% 24% 25% 25% 22% Anti-hormone therapy (e.g. endocrine therapy) 23% 27% 28% 23% 18% 14% 19% 23% 37% Radiation therapy 15% 16% 17% 21% 12% 10% 15% 17% 12% Medical castration (injection of pituitarygland hormone stimulator or pituitarygland hormone blocking agent) 13% 24% 5% 12% 9% 8% 12% 14% 16% I have been participating in a scientific research study 6% 7% 6% 5% 6% 6% 6% 7% 5% Chemotherapy 3% 4% 2% 3% 3% 2% 3% 3% 4% Brachytherapy (internal radiation therapy) 3% 3% 3% 2% 3% 5% 3% 3% 3% Pain-management therapy 2% 2% 3% 2% 1% 2% 1% 2% 2% Surgical removal of the testicles (surgical castration/orchiectomy) Alternative medication/treatment (e.g. homeopathy) 2% 3% 1% 1% 1% 1% 1% 2% 3% 2% 2% 0% 1% 2% 2% 1% 2% 2% I have declined to receive treatment 1% 1% 1% 1% 1% 1% 1% 1% 1% Cryotherapy 0% 1% 0% 1% 0% 0% 0% 0% 1% High-frequency ultrasound 0% 0% 0% 0% 0% 0% 0% 0% 0% Other treatment 4% 4% 3% 5% 4% 2% 3% 4% 6% 1% 1% 2% 1% 1% 1% 1% 1% 3% Total 6,184 1, ,066 2, ,270 2, * Basis: All respondents having answered. Page 54 of 121

55 13. Are you satisfied with your therapy or your decision not to receive treatment? Are you satisfied with your therapy or your decision not to receive treatment? (Tick the appropriate box). 68% of the respondents are satisfied with their therapy or their decision not to receive treatment. 4% are not satisfied. Yes 68% The greatest satisfaction is found in Finland (74%) and the lowest in Norway (57%). No 4% Not relevant in my case 19% 10% Are you satisfied with your therapy or your decision not to receive treatment? (Tick the appropriate box). Total Denmark Finland Norway Sweden Yes 68% 69% 74% 57% 68% 63% 69% 68% 65% No 4% 4% 2% 6% 4% 7% 4% 3% 6% Not relevant in my case 19% 17% 16% 27% 17% 17% 19% 20% 17% 10% 9% 8% 10% 11% 13% 8% 10% 12% Total 6,137 1, ,059 2, ,273 2, Page 55 of 121

56 14. Which therapy have you previously received? Which therapy have you previously received? (If relevant, tick off more than one box). 43% of the respondents have previously been operated. Operation (with surgical removal of the cancer tissue) 43% 38% have previously received radiation therapy. Radiation therapy 38% 22% have previously received anti-hormone therapy. Anti-hormone therapy (e.g. endocrine therapy) 22% 18% have previously been under observation. 12% have previously been medically castrated. 13% have not previously received any treatment. There are significant variations between the countries. Thus, in Finland, 52% have received radiation therapy whereas this only applies to 25% in Denmark I have been under observation (my doctor monitored the development of my disease, but without treatment) I have not received any previous treatment Medical castration (injection of pituitary-gland hormone stimulator or pituitary-gland hormone blocking agent) I have been participating in a scientific research study Brachytherapy (internal radiation therapy) 7% 5% 13% 12% 18% Chemotherapy 3% Surgical removal of the testicles (surgical castration/orchiectomy) 2% Pain-management therapy 2% Alternative medication/treatment (e.g. homeopathy) 1% I have declined to receive treatment 1% Please see the table on the following page. High-frequency ultrasound 0% Cryotherapy 0% Other treatment 2% 2% Page 56 of 121

57 Which therapy have you previously received? (If relevant, tick off more than one box). Total Denmark Finland Norway Sweden 80+ Operation (with surgical removal of the cancer tissue) 43% 35% 44% 51% 43% 56% 52% 40% 14% Radiation therapy 38% 25% 52% 45% 38% 24% 34% 44% 36% Anti-hormone therapy (e.g. endocrine therapy) I have been under observation (my doctor monitored the development of my disease, but without treatment) 22% 22% 36% 24% 17% 14% 19% 24% 34% 18% 11% 21% 14% 24% 8% 14% 21% 28% I have not received any previous treatment 13% 20% 8% 8% 12% 18% 13% 11% 11% Medical castration (injection of pituitarygland hormone stimulator or pituitarygland hormone blocking agent) 12% 19% 5% 13% 9% 9% 10% 13% 15% I have been participating in a scientific research study 7% 6% 7% 5% 7% 5% 6% 7% 8% Brachytherapy (internal radiation therapy) 5% 2% 6% 3% 8% 6% 5% 6% 5% Chemotherapy 3% 4% 2% 3% 3% 3% 3% 4% 3% Surgical removal of the testicles (surgical castration/orchiectomy) 2% 3% 1% 1% 1% 1% 1% 2% 5% Pain-management therapy 2% 2% 3% 2% 1% 2% 1% 2% 1% Alternative medication/treatment (e.g. homeopathy) 1% 2% 0% 1% 1% 1% 1% 1% 2% I have declined to receive treatment 1% 1% 1% 0% 1% 1% 1% 1% 2% High-frequency ultrasound 0% 1% 0% 1% 0% 0% 0% 0% 1% Cryotherapy 0% 1% 0% 1% 0% 0% 0% 0% 1% Other treatment 2% 2% 1% 3% 2% 1% 2% 2% 5% 2% 2% 1% 1% 2% 1% 1% 1% 3% Total 6,212 1,626 1,001 1,074 2, ,299 2, * Basis: All respondents having answered. Page 57 of 121

58 15. Have you been satisfied with your therapy or your decision not to receive treatment? Have you been satisfied with your therapy or your decision not to receive treatment? (Tick the appropriate box). 71% of the respondents have been satisfied with their therapy or their decision not to receive treatment, whereas 4% are not satisfied. Yes 71% The greatest satisfaction is found in Finland (78%) and the lowest in Norway (65%). No 4% Not relevant in my case 16% 9% Have you been satisfied with your therapy or your decision not to receive treatment? (Tick the appropriate box). Total Denmark Finland Norway Sweden Yes 71% 71% 78% 65% 72% 63% 71% 72% 71% No 4% 4% 3% 6% 4% 6% 5% 4% 5% Not relevant in my case 16% 17% 12% 20% 15% 17% 16% 16% 13% 9% 8% 7% 10% 9% 14% 7% 8% 10% Total 6,167 1, ,072 2, ,291 2, Page 58 of 121

59 16. Have you experienced being ineligible for any therapy? Have you experienced being ineligible for any therapy? (Tick the appropriate box) 15% of the respondents have experienced not to be eligible for a certain treatment, whereas 73% have not experienced this situation. There are only slight variations among the countries. Yes No 15% 73% Not relevant in my case 12% Have you experienced being ineligible for any therapy? (Tick the appropriate box) Total Denmark Finland Norway Sweden Yes 15% 16% 15% 15% 15% 19% 15% 14% 20% No 73% 72% 66% 75% 75% 70% 74% 73% 68% Not relevant in my case 12% 12% 20% 10% 10% 11% 11% 13% 12% Total 6,098 1, ,057 2, ,289 2, Page 59 of 121

60 17. Why were you ineligible for this therapy? Among the prostate-cancer patients having experienced being ineligible for a specific therapy, the reason for 21% of the respondents was that their doctor had advised against it. Why were you ineligible for this therapy? (If relevant, tick off more than one box) My doctor advised against the therapy 21% 19% state that their prostate cancer is/was in too advanced a stage for them to be eligible for the desired therapy. 17% did not receive the desired therapy because of their age. In 16% of the cases, the doctor did not find the therapy necessary; and 13% did not receive the desired therapy because the health authorities did not cover the costs connected with the therapy. My disease is/was too advanced Because of my age My doctor didn't believe this therapy to be necessary The health authorities did not cover the costs of the therapy 13% 17% 16% 19% In 13% of the cases, the desired treatment was not available in their own country, whereas, in 7% of the cases, the particular therapy was deemed to be too risky as compared with their general condition There are significant variations among the countries. Thus 30% of the Danes state that their disease is/was too advanced, whereas this is only the case for 8% in Finland. The therapy was not available in my country Due to my general condition, the therapy was deemed to be too risky My personal health insurance did not cover the therapy My workplace health insurance did not cover the therapy 1% 1% 7% 13% Other 22% Please see the table on the following page. 10% Page 60 of 121

61 Why were you ineligible for this therapy? (If relevant, tick off more than one box) Total Denmark Finland Norway Sweden My doctor advised against the therapy 21% 15% 18% 23% 25% 23% 19% 23% 12% My disease is/was too advanced 19% 30% 8% 22% 15% 18% 24% 20% 2% Because of my age 17% 15% 22% 17% 16% 3% 2% 18% 60% 80+ My doctor didn't believe this therapy to be necessary 16% 13% 29% 16% 14% 19% 10% 19% 21% The health authorities did not cover the costs of the therapy 13% 9% 18% 13% 14% 15% 15% 12% 8% The therapy was not available in my country 13% 18% 7% 16% 9% 26% 13% 11% 6% Due to my general condition, the therapy was deemed to be too risky My personal health insurance did not cover the therapy My workplace health insurance did not cover the therapy 7% 8% 8% 9% 4% 5% 5% 7% 4% 1% 1% 4% 1% 1% 3% 1% 1% 2% 1% 0% 5% 0% 0% 3% 0% 1% 1% Other 22% 27% 15% 25% 19% 32% 28% 18% 14% 10% 3% 14% 7% 14% 3% 10% 9% 19% Total * Basis: Responding patients having experienced a therapy as being unavailable to them. Page 61 of 121

62 18. To which degree did the therapy exert a negative influence on your quality of life? To which degree did the therapy exert a negative influence on your quality of life? (Tick the appropriate box). To a high degree or a very high degree, 38% of the respondents have experienced the therapy to have exerted a negative influence on their quality of life. Not at all 9% 46% believe the therapy to have exerted a negative influence on their quality of life to a lesser degree, whereas 9% answers that the therapy exerted no negative influence on their quality of life whatsoever. Most Norwegians experienced a negative influence on their quality of life (48%), whereas the Finns (with 67%) states that the therapy only affected their quality of life to a lesser degree, or not at all. To a lesser degree To a high degree To a very high degree 8% 30% 46% Not relevant in my case 4% 2% To which degree did the therapy exert a negative influence on your quality of life? (Tick the appropriate box). Total Denmark Finland Norway Sweden Not at all 9% 8% 13% 4% 9% 6% 7% 8% 15% To a lesser degree 46% 45% 54% 44% 46% 43% 43% 49% 51% To a high degree 30% 32% 25% 39% 27% 30% 34% 29% 22% To a very high degree 8% 9% 5% 9% 8% 12% 10% 8% 3% Not relevant in my case 4% 4% 2% 2% 6% 6% 4% 4% 5% 2% 2% 1% 1% 3% 4% 2% 2% 4% Total 6,245 1, ,076 2, ,303 2, Page 62 of 121

63 19. Did you experience any of the following adverse effects as a result of the prostatecancer therapy? Did you experience any of the following adverse effects as a result of the prostate cancer therapy? (If relevant, tick off more than one box) Among the respondents, erectile dysfunction is stated as the most frequently experienced side effect as a result of the prostate-cancer therapy. Thus 80% state that they have experienced erectile dysfunction as a result of their therapy. Erectile dysfunction Incontinence (bladder dysfunction) Fatigue 38% 31% 80% 38% experienced incontinence as a result of their therapy, 31% has experienced fatigue and 29% experienced hot flushes. 22% experienced the development of breasts as a result of the therapy, whereas 21% experienced impaired muscular strength, and 16% experienced weight gain. Hot flushes Development of breasts Impaired muscular strength 29% 22% 21% 14% experience insomnia, 13% suffer from depression, and 11% suffer from faecal incontinence as a result of their therapy. Weight gain Insomnia 16% 14% There are only slight variations among the countries. Depression 13% Faecal incontinence 11% Pain 8% Please see the table on the following page. Hypertension Not relevant in my case 7% 6% Hair loss 6% None of the above 4% Diabetes 4% Nausea 4% Osteoporosis (brittle-bone disease) 3% Blood clots 2% Other 2% 2% Page 63 of 121

64 Did you experience any of the following adverse effects as a result of the prostate cancer therapy? (If relevant, tick off more than one box) Total Denmark Finland Norway Sweden 80+ Erectile dysfunction 80% 81% 78% 86% 76% 78% 82% 81% 67% Incontinence (bladder dysfunction) 38% 38% 33% 40% 38% 43% 40% 38% 29% Fatigue 31% 37% 24% 38% 27% 35% 30% 31% 33% Hot flushes 29% 37% 25% 35% 22% 22% 28% 29% 35% Development of breasts 22% 27% 23% 20% 19% 12% 17% 24% 35% Impaired muscular strength 21% 24% 22% 23% 18% 15% 19% 22% 27% Weight gain 16% 23% 13% 16% 14% 17% 17% 16% 15% Insomnia 14% 16% 17% 16% 11% 16% 15% 13% 14% Depression 13% 15% 14% 15% 10% 21% 15% 12% 7% Faecal incontinence 11% 8% 10% 12% 12% 7% 9% 12% 12% Pain 8% 12% 7% 8% 6% 15% 8% 7% 5% Hypertension 7% 8% 9% 7% 7% 4% 6% 8% 10% Not relevant in my case 6% 5% 5% 4% 8% 8% 7% 5% 8% Hair loss 6% 7% 4% 9% 4% 5% 5% 7% 6% None of the above 4% 4% 5% 2% 5% 4% 5% 4% 4% Diabetes 4% 3% 8% 4% 4% 1% 3% 5% 6% Nausea 4% 5% 2% 4% 3% 4% 3% 4% 3% Osteoporosis (brittle-bone disease) 3% 4% 3% 4% 2% 1% 2% 3% 6% Blood clots 2% 3% 3% 2% 1% 1% 2% 3% 3% Other 2% 2% 3% 3% 2% 3% 2% 2% 1% 2% 1% 3% 2% 3% 2% 2% 2% 4% Total 6,293 1,665 1,008 1,086 2, ,309 2, * Basis: All respondents having answered. Page 64 of 121

65 LIFE WITH PROSTATE CANCER Page 65 of 121

66 20. Collectively: How has your outlook on life changed since you were diagnosed with prostate cancer? Collectively: How has your outlook on life changed since you were diagnosed with prostate cancer? (Percentages having answered Yes to the following options) The outlook on life of the respondents has changed after they were diagnosed with prostate cancer: 67% think more about living in the moment and enjoying life, and 46% are focused on acting out their dreams while they can still do so. I think more about living in the moment and enjoying life while I can still do so I think more about acting out my dreams while I can still do so 46% 67% 40% feel that every single extra day counts; and 36% think more about what will happen to their families when they are no longer here. My outlook on life has not changed since I was diagnosed 42% 33% think more about death, whereas 30% spend more time with their families and friends than before they were diagnosed. 29% are no longer capable of enjoying life the way they did before they were diagnosed; and 10% feel alone with their disease. 42% states that their outlook on life has not changed. Now every single extra day counts I think more about what will happen to my family when I'm no longer here I think more about death I spend more time with family and friends than before I was diagnosed 40% 36% 33% 30% I'm no longer capable of enjoying life the way I used to 29% I feel alone with my disease 10% Page 66 of 121

67 20.1. Now every single extra day counts How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). Now every single extra day counts. 40% of the respondents feel that, after being diagnosed with prostate cancer, every single extra day counts. There are significant variations among the countries which, among other things, are owing to the fact that the wording of the question was not consistent in the four countries. Yes No 40% 47% Don't know 14% How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). Now every single extra day counts. Total Denmark Norway Finland Sweden 80+ Yes 40% 34% 24% 13% 60% 39% 38% 41% 41% No 47% 52% 63% 81% 24% 47% 47% 47% 44% 14% 14% 13% 6% 16% 15% 14% 13% 15% Total 5,733 1, , ,189 2, ** Due to language inconsistencies in the wording of this question in the original questionnaire in the four countries, any direct comparisons between the countries should be made with caution. Page 67 of 121

68 20.2. I feel alone with my disease How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). I feel alone with my disease. 10% of the respondents feel alone with their disease after having been diagnosed with prostate cancer. There are only slight variations among the countries. Yes 10% No 85% Don't know 5% How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). I feel alone with my disease. Total Denmark Norway Finland Sweden 80+ Yes 10% 10% 12% 8% 11% 18% 12% 8% 9% No 85% 85% 84% 87% 84% 76% 84% 87% 85% 5% 5% 4% 5% 4% 6% 4% 4% 6% Total 5,703 1, , ,203 2, Page 68 of 121

69 20.3. I spend more time with family and friends than before I was diagnosed How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). I spend more time with family and friends than before I was diagnosed. 30% of the respondents spend more time with family and friends than before they were diagnosed with prostate cancer. There are only slight variations among the countries. Yes 30% No 56% 14% How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). I spend more time with family and friends than before I was diagnosed. Total Denmark Norway Finland Sweden Yes 30% 25% 30% 30% 33% 38% 32% 29% 21% No 56% 62% 59% 56% 50% 50% 56% 57% 57% 14% 12% 11% 14% 17% 12% 12% 15% 22% Total 5,724 1, , ,196 2, Page 69 of 121

70 20.4. I think more about death How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). I think more about death. 33% of the respondents think more about death after being diagnosed with prostate cancer. In Denmark the percentage is a little higher (40%) than in the other countries (30-31%). Yes 33% No 59% 8% How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). I think more about death. Total Denmark Norway Finland Sweden 80+ Yes 33% 40% 30% 30% 31% 48% 35% 31% 27% No 59% 52% 63% 61% 62% 47% 58% 61% 62% 8% 8% 7% 9% 7% 5% 7% 8% 11% Total 5,779 1,587 1, , ,202 2, Page 70 of 121

71 20.5. I think more about what will happen to my family when I'm no longer here How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). I think more about what will happen to my family when I'm no longer here. After being diagnosed with prostate cancer, 36% of the respondents think more about what will happen to their families when they are no longer here. Most Danes (40%) think about what will happen to their families. Finland has the lowest score in this respect (28%). Yes 36% No 55% 9% How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). I think more about what will happen to my family when I'm no longer here. Total Denmark Norway Finland Sweden Yes 36% 40% 35% 28% 37% 44% 35% 35% 34% No 55% 51% 57% 62% 55% 49% 57% 56% 55% 9% 9% 7% 10% 9% 7% 8% 9% 11% Total 5,750 1,586 1, , ,206 2, Page 71 of 121

72 20.6. I think more about living in the moment and enjoying life while I can still do so How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). I think more about living in the moment and enjoying life while I can still do so. After being diagnosed with prostate cancer, 67% of the respondents think more about living in the moment and enjoying life while they can still do so. Most Finnish respondents (73%) think about living in the moment and enjoying life, whereas the Norwegians' score is lowest (56%) in this connection. Yes No 24% 67% 9% How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). I think more about living in the moment and enjoying life while I can still do so. Total Denmark Norway Finland Sweden Yes 67% 66% 56% 73% 71% 70% 67% 67% 65% No 24% 25% 36% 20% 19% 21% 25% 24% 25% 9% 9% 8% 7% 9% 9% 8% 9% 11% Total 5,897 1,602 1, , ,226 2, Page 72 of 121

73 20.7. I think more about acting out my dreams while I can still do so How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). I think more about acting out my dreams while I can still do so. After being diagnosed with prostate cancer, 46% of the respondents think more about acting out their dreams while they can still do so. Most Swedes and Finns think about acting out their dreams (50%), whereas the Norwegians score lowest in this connection (35%). Yes No 41% 46% 13% How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). I think more about acting out my dreams while I can still do so. Total Denmark Norway Finland Sweden Yes 46% 46% 35% 50% 50% 53% 50% 43% 37% No 41% 41% 54% 37% 36% 37% 38% 42% 46% 13% 13% 11% 13% 14% 10% 12% 14% 17% Total 5,731 1, , ,211 2, Page 73 of 121

74 20.8. I'm no longer capable of enjoying life the way I used to How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). I'm no longer capable of enjoying life the way I used to. 29% of the respondents are no longer capable of enjoying life the way they used to before being diagnosed with prostate cancer. This mostly applies for Finns (39%) and to the lowest extent to Danes (24%). Yes 29% No 57% 15% How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). I'm no longer capable of enjoying life the way I used to. Total Denmark Norway Finland Sweden Yes 29% 24% 30% 39% 27% 29% 27% 28% 32% No 57% 59% 59% 50% 56% 61% 59% 55% 49% 15% 17% 11% 11% 17% 10% 14% 16% 19% Total 5,746 1, , ,200 2, Page 74 of 121

75 20.9. My outlook on life has not changed since I was diagnosed How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). My outlook on life has not changed since I was diagnosed. 42% of the respondents diagnosed with prostate cancer do not find their outlook on life to have changed after being diagnosed. There are only slight variations among the countries. Yes No 42% 42% 15% How has your outlook on life changed since you were diagnosed with prostate cancer? (Respond to each statement). My outlook on life has not changed since I was diagnosed. Total Denmark Norway Finland Sweden 80+ Yes 42% 43% 44% 43% 41% 37% 44% 43% 39% No 42% 39% 42% 44% 44% 46% 40% 42% 46% 15% 18% 14% 13% 15% 17% 16% 15% 15% Total 5,954 1,621 1, , ,243 2, Page 75 of 121

76 21. How do you see your future? How do you see your future? (If relevant, tick off more than one box). 58% of the respondents state that they will not let their disease affect their I will not let my disease affect my everyday life 58% everyday life. 50% state that their PSA levels are normal and that the future looks bright to them 41% have come to terms with their disease and take one day at a time. 30% % state that their PSA levels are normal, but they fear relapse. 26% state that they intend to fight and conquer the cancer. 16% worry about the future; and 7% are afraid to die. 3% are scared of being abandoned by their partner because of their disease. My PSA level is normal, and the future looks bright I have come to terms with my disease and take one day at a time My PSA level is normal, but I fear relapse I intend to fight and conquer the cancer 26% 30% 41% 50% There are only slight variations among the countries. I worry about the future 16% I'm afraid to die 7% Please see the table on the following page. I'm afraid my partner will leave me because of my disease 3% 2% Page 76 of 121

77 How do you see your future? (If relevant, tick off more than one box). Total Denmark Norway Finland Sweden 80+ I will not let my disease affect my everyday life My PSA level is normal, and the future looks bright I have come to terms with my disease and take one day at a time My PSA level is normal, but I fear relapse I intend to fight and conquer the cancer 58% 63% 61% 58% 54% 45% 54% 63% 65% 50% 47% 51% 56% 48% 42% 52% 50% 44% 41% 35% 36% 50% 42% 39% 36% 41% 52% 30% 32% 38% 27% 28% 32% 29% 32% 28% 26% 29% 23% 27% 25% 32% 25% 27% 24% I worry about the future 16% 20% 15% 14% 16% 25% 18% 15% 10% I'm afraid to die 7% 9% 8% 5% 7% 15% 8% 6% 5% I'm afraid my partner will leave me because of my disease 3% 3% 3% 3% 3% 9% 4% 2% 1% 2% 2% 2% 2% 2% 1% 2% 2% 3% Total 6,313 1,670 1,086 1,016 2, ,315 2, * Basis: All respondents having answered. Page 77 of 121

78 22. Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? I feel I'm coping well with my disease 87% of the respondents feel that they are coping well with their disease. There are only slight variations among the countries. Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I feel I'm coping well with my disease. Disagree very much Disagree 1% 2% Neither/ nor 10% Agree 59% Agree very much 28% 1% Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I feel I'm coping well with my disease. Total Denmark Norway Finland Sweden Disagree very much 1% 1% 1% 0% 1% 2% 1% 1% 1% Disagree 2% 2% 1% 2% 2% 4% 2% 2% 2% Neither/ nor 10% 8% 8% 10% 12% 11% 11% 9% 7% Agree 59% 57% 64% 67% 54% 52% 55% 61% 65% Agree very much 28% 31% 25% 20% 30% 29% 30% 27% 23% 1% 1% 1% 1% 1% 1% 1% 1% 2% Total 5,973 1,602 1, , ,229 2, Page 78 of 121

79 22.2. I feel prepared to live with prostate cancer for the rest of my life Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I feel prepared to live with prostate cancer for the rest of my life. 72% of the respondents feel prepared to live with prostate cancer for the rest of their life. There are only slight variations among the countries. Disagree very much Disagree 5% 7% Neither/ nor 11% Agree 52% Agree very much 20% 5% Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I feel prepared to live with prostate cancer for the rest of my life. Total Denmark Norway Finland Sweden Disagree very much 5% 4% 4% 2% 8% 6% 6% 5% 2% Disagree 7% 8% 9% 4% 7% 12% 9% 6% 3% Neither/ nor 11% 13% 11% 6% 11% 18% 14% 9% 5% Agree 52% 49% 58% 65% 46% 40% 45% 56% 65% Agree very much 20% 21% 14% 22% 22% 17% 21% 20% 22% 5% 5% 4% 1% 6% 7% 6% 4% 3% Total 5,879 1,586 1, , ,205 2, Page 79 of 121

80 22.3. I find it difficult to concentrate Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I find it difficult to concentrate. After being diagnosed with prostate cancer, 17% of the respondents find it difficult to concentrate. Disagree very much 23% There are only slight variations among the countries. Disagree 40% Neither/ nor 17% Agree 14% Agree very much 3% 3% Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I find it difficult to concentrate. Total Denmark Norway Finland Sweden Disagree very much 23% 20% 15% 16% 31% 22% 24% 23% 22% Disagree 40% 43% 44% 46% 33% 32% 40% 41% 40% Neither/ nor 17% 19% 19% 18% 16% 19% 18% 17% 19% Agree 14% 13% 16% 15% 13% 20% 14% 13% 12% Agree very much 3% 3% 3% 3% 4% 7% 3% 3% 3% 3% 2% 3% 2% 4% 1% 2% 4% 4% Total 5,782 1,582 1, , ,221 2, Page 80 of 121

81 22.4. I feel restless Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I feel restless. After being diagnosed with prostate cancer, 17% of the respondents feel restless. There are only slight variations among the countries. Disagree very much 23% Disagree 41% Neither/ nor 17% Agree 14% Agree very much 3% 2% Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I feel restless. Total Denmark Norway Finland Sweden Disagree very much 23% 21% 15% 18% 30% 22% 24% 23% 22% Disagree 41% 44% 47% 47% 34% 33% 40% 43% 44% Neither/ nor 17% 18% 18% 18% 16% 19% 17% 17% 14% Agree 14% 13% 15% 14% 14% 21% 15% 12% 12% Agree very much 3% 2% 2% 2% 4% 3% 2% 2% 4% 2% 2% 2% 2% 3% 1% 2% 2% 3% Total 5,811 1,580 1, , ,230 2, Page 81 of 121

82 I suffer from insomnia Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I suffer from insomnia. 22% of the respondents suffer from insomnia after being diagnosed with prostate cancer. More Finns (30%) suffer from insomnia than is the case for the other countries (18-23%). Disagree very much 25% Disagree 36% Neither/ nor 15% Agree 18% Agree very much 4% 1% Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I suffer from insomnia. Total Denmark Norway Finland Sweden Disagree very much 25% 22% 18% 16% 35% 25% 26% 25% 26% Disagree 36% 39% 41% 38% 31% 33% 35% 37% 36% Neither/ nor 15% 16% 17% 13% 14% 15% 15% 16% 13% Agree 18% 18% 19% 24% 14% 21% 18% 17% 18% Agree very much 4% 4% 4% 6% 4% 6% 4% 4% 5% 1% 1% 1% 2% 2% 1% 1% 1% 2% Total 5,848 1,585 1, , ,235 2, Page 82 of 121

83 22.6. I feel overcome by my disease Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I feel overcome by my disease. After being diagnosed with prostate cancer, 13% of the respondents feel overcome by their disease. More Swedes feel overcome (20%) as compared with the other countries (6-8%). Disagree very much Disagree 25% 37% Neither/ nor 19% Agree 10% Agree very much 3% 6% Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I feel overcome by my disease. Total Denmark Norway Finland Sweden Disagree very much 25% 20% 16% 28% 31% 23% 25% 25% 25% Disagree 37% 39% 42% 48% 29% 33% 34% 40% 39% Neither/ nor 19% 24% 25% 12% 16% 21% 22% 18% 15% Agree 10% 7% 5% 6% 15% 15% 10% 9% 9% Agree very much 3% 1% 1% 1% 5% 4% 3% 2% 2% 6% 9% 11% 4% 3% 4% 6% 6% 9% Total 5,745 1, , ,217 2, Page 83 of 121

84 22.7. I'm nervous Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I'm nervous. After being diagnosed with prostate cancer, 13% of the respondents feel nervous. There are only slight variations among the countries. Disagree very much 27% Disagree 41% Neither/ nor 17% Agree 11% Agree very much 2% 3% Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I'm nervous. Total Denmark Norway Finland Sweden Disagree very much 27% 21% 21% 21% 35% 25% 27% 27% 25% Disagree 41% 42% 47% 46% 35% 29% 40% 42% 44% Neither/ nor 17% 20% 18% 16% 16% 22% 18% 17% 13% Agree 11% 13% 11% 11% 9% 20% 11% 9% 9% Agree very much 2% 1% 1% 2% 2% 3% 1% 2% 3% 3% 3% 3% 4% 3% 1% 2% 3% 6% Total 5,827 1,586 1, , ,233 2, Page 84 of 121

85 22.8. I feel that I've lost part of my virility Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I feel that I've lost part of my virility. After being diagnosed with prostate cancer, 63% of the respondents feel that they have lost part of their virility. Disagree very much 8% There are only slight variations among the countries. Disagree 14% Neither/ nor 13% Agree 40% Agree very much 23% 2% Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I feel that I've lost part of my virility. Total Denmark Norway Finland Sweden Disagree very much 8% 7% 5% 7% 11% 8% 9% 8% 9% Disagree 14% 14% 14% 18% 13% 15% 13% 14% 17% Neither/ nor 13% 12% 11% 14% 15% 14% 13% 14% 13% Agree 40% 41% 43% 40% 37% 33% 38% 41% 44% Agree very much 23% 24% 26% 18% 23% 29% 25% 22% 13% 2% 1% 2% 3% 2% 1% 2% 1% 4% Total 6,018 1,611 1, , ,273 2, Page 85 of 121

86 22.9. In spite of taking painkillers, I'm in pain Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). In spite of taking painkillers, I'm in pain. 6% of the respondents are in pain, in spite of taking painkillers. There are only slight variations among the countries. Disagree very much 49% Disagree 33% Neither/ nor 7% Agree 4% Agree very much 2% 5% Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). In spite of taking painkillers, I'm in pain. Total Denmark Norway Finland Sweden Disagree very much 49% 41% 41% 41% 61% 51% 52% 48% 41% Disagree 33% 37% 43% 40% 23% 26% 31% 35% 38% Neither/ nor 7% 9% 8% 8% 4% 10% 7% 6% 6% Agree 4% 6% 4% 4% 3% 6% 3% 4% 5% Agree very much 2% 2% 1% 2% 2% 1% 2% 2% 3% 5% 5% 3% 5% 7% 6% 5% 5% 7% Total 5,780 1,583 1, , ,217 2, Page 86 of 121

87 I don't have much energy Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I don't have much energy. After being diagnosed with prostate cancer, 24% of the respondents do not have much energy. Disagree very much 23% Most Norwegians feel a loss of energy (32%), whereas in this respect the Finns have the lowest score (18%). Disagree 32% Neither/ nor 19% Agree 18% Agree very much 6% 2% Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I don't have much energy. Total Denmark Norway Finland Sweden Disagree very much 23% 19% 13% 24% 30% 26% 25% 23% 16% Disagree 32% 33% 32% 41% 27% 27% 33% 32% 29% Neither/ nor 19% 19% 20% 15% 20% 18% 19% 19% 20% Agree 18% 21% 26% 14% 15% 19% 16% 19% 26% Agree very much 6% 6% 6% 4% 6% 8% 5% 6% 6% 2% 1% 2% 2% 2% 1% 2% 2% 3% Total 5,890 1,591 1, , ,243 2, Page 87 of 121

88 I fear that my condition will deteriorate Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I fear that my condition will deteriorate. 36% of the respondents fear that their condition will deteriorate. This is mainly the case for Norwegians (44%) and least so with respect to Finns (28%). Disagree very much Disagree 18% 24% Neither/ nor 18% Agree 28% Agree very much 8% 4% Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I fear that my condition will deteriorate. Total Denmark Norway Finland Sweden Disagree very much 18% 13% 11% 17% 24% 15% 19% 17% 15% Disagree 24% 24% 25% 33% 21% 19% 25% 25% 23% Neither/ nor 18% 18% 18% 18% 18% 16% 18% 18% 16% Agree 28% 33% 36% 24% 23% 34% 27% 28% 33% Agree very much 8% 10% 8% 4% 9% 14% 9% 7% 4% 4% 3% 3% 4% 5% 1% 3% 4% 8% Total 5,910 1,597 1, , ,250 2, Page 88 of 121

89 I'm losing hope in my fight against the disease Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I'm losing hope in my fight against the disease. 5% of the respondents are losing hope in their fight against the disease. There are only slight variations among the countries. Disagree very much Disagree 40% 43% Neither/ nor 10% Agree 3% Agree very much 2% 3% Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I'm losing hope in my fight against the disease. Total Denmark Norway Finland Sweden Disagree very much 43% 40% 36% 38% 49% 51% 47% 40% 31% Disagree 40% 42% 49% 45% 33% 34% 38% 42% 43% Neither/ nor 10% 11% 9% 9% 10% 9% 9% 10% 12% Agree 3% 3% 3% 2% 3% 2% 2% 3% 5% Agree very much 2% 1% 1% 2% 2% 1% 1% 2% 3% 3% 3% 2% 5% 3% 3% 3% 3% 6% Total 5,836 1,585 1, , ,236 2, Page 89 of 121

90 I'm afraid to die Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I'm afraid to die. After being diagnosed with prostate cancer, 14% of the respondents are afraid to die. Most Danes are afraid to die (18%) and fewest Finns (10%). Disagree very much Disagree 30% 33% Neither/ nor 18% Agree 11% Agree very much 3% 4% Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I'm afraid to die. Total Denmark Norway Finland Sweden Disagree very much 30% 25% 23% 29% 37% 27% 30% 31% 29% Disagree 33% 34% 38% 41% 26% 23% 31% 35% 36% Neither/ nor 18% 19% 20% 16% 18% 20% 19% 18% 16% Agree 11% 14% 13% 8% 10% 21% 12% 9% 10% Agree very much 3% 4% 2% 2% 4% 7% 4% 2% 3% 4% 4% 3% 4% 4% 2% 3% 5% 7% Total 5,850 1,586 1, , ,242 2, Page 90 of 121

91 I feel upset Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I feel upset. After being diagnosed with prostate cancer, 19% of the respondents feel upset. Most Norwegians feel upset (24%) and fewest Finns (15%). Disagree very much Disagree 27% 32% Neither/ nor 20% Agree 15% Agree very much 2% 4% Do you agree or disagree with the following statements concerning your emotional well-being after you were diagnosed with prostate cancer? (Tick off each statement). I feel upset. Total Denmark Norway Finland Sweden 80+ Disagree very much 27% 23% 20% 22% 35% 25% 27% 28% 26% Disagree 32% 33% 34% 41% 27% 21% 32% 33% 36% Neither/ nor 20% 21% 20% 19% 19% 22% 20% 19% 18% Agree 15% 18% 21% 12% 12% 24% 15% 14% 12% Agree very much 4% 3% 3% 3% 4% 6% 4% 3% 3% 2% 2% 3% 3% 2% 1% 2% 3% 5% Total 5,879 1,594 1, , ,247 2, Page 91 of 121

92 Do you agree or disagree with the following statements concerning your wellbeing, as to social and family relations, since you were diagnosed with prostate cancer? My family supports me emotionally Do you agree or disagree with the following statements concerning your wellbeing, as to social and family relations, since you were diagnosed with prostate cancer? (Tick off each statement). My family supports me emotionally. 85% of the respondents are emotionally supported by their families. There are only slight variations among the countries. Disagree very much Disagree 1% 2% Neither/ nor 9% Agree Agree very much 40% 45% /not relevant in my case 3% Do you agree or disagree with the following statements concerning your well-being, as to social and family relations, since you were diagnosed with prostate cancer? (Tick off each statement). My family supports me emotionally. Total Denmark Norway Finland Sweden Disagree very much 1% 1% 1% 1% 1% 2% 1% 1% 1% Disagree 2% 1% 2% 1% 2% 2% 2% 2% 1% Neither/ nor 9% 8% 11% 9% 8% 9% 9% 9% 8% Agree 45% 47% 55% 51% 38% 35% 43% 47% 55% Agree very much 40% 40% 29% 35% 48% 48% 43% 39% 32% /not relevant in my case 80+ 3% 2% 3% 2% 3% 3% 3% 3% 4% Total 6,130 1,643 1, , ,292 2, Page 92 of 121

93 My friends support me emotionally 71% of the respondents are emotionally supported by their friends. Do you agree or disagree with the following statements concerning your well-being, as to social and family relations, since you were diagnosed with prostate cancer? (Tick off each statement). My friends support me emotionally. There are only slight variations among the countries. Disagree very much 1% Disagree 3% Neither/ nor 17% Agree 47% Agree very much 24% /not relevant in my case 8% Do you agree or disagree with the following statements concerning your well-being, as to social and family relations, since you were diagnosed with prostate cancer? (Tick off each statement). My friends support me emotionally. Total Denmark Norway Finland Sweden Disagree very much 1% 1% 1% 0% 1% 2% 1% 1% 1% Disagree 3% 3% 4% 3% 2% 5% 3% 2% 2% Neither/ nor 17% 18% 19% 16% 16% 17% 18% 17% 16% Agree 47% 49% 53% 55% 40% 41% 47% 49% 48% Agree very much 24% 23% 18% 18% 30% 29% 26% 22% 18% /not relevant in my case 80+ 8% 7% 6% 8% 10% 5% 6% 8% 15% Total 6,032 1,620 1, , ,279 2, Page 93 of 121

94 23.3. I'm satisfied with the way in which I communicate with my family about my disease 85% of the respondents are satisfied with the way in which they communicate with their family about their disease. There are only slight variations among the countries. Do you agree or disagree with the following statements concerning your wellbeing, as to social and family relations, since you were diagnosed with prostate cancer? (Tick off each statement). I'm satisfied with the way in which I communicate with my family about my disease. Disagree very much Disagree 1% 2% Neither/ nor 9% Agree 52% Agree very much 33% /not relevant in my case 3% Do you agree or disagree with the following statements concerning your well-being, as to social and family relations, since you were diagnosed with prostate cancer? (Tick off each statement). I'm satisfied with the way in which I communicate with my family about my disease. Total Denmark Norway Finland Sweden Disagree very much 1% 1% 0% 0% 1% 2% 1% 1% 1% Disagree 2% 2% 2% 2% 2% 3% 3% 2% 1% Neither/ nor 9% 7% 11% 10% 8% 10% 9% 8% 8% Agree 52% 56% 61% 60% 43% 44% 50% 55% 57% Agree very much 33% 33% 24% 24% 42% 39% 35% 32% 28% /not relevant in my case 80+ 3% 2% 2% 4% 3% 2% 2% 3% 5% Total 6,099 1,636 1, , ,289 2, Page 94 of 121

95 I feel my relationship with my partner/wife has become closer After being diagnosed with prostate cancer, 51% of the respondents feel that their relationship with their partner/wife has become closer Do you agree or disagree with the following statements concerning your well-being, as to social and family relations, since you were diagnosed with prostate cancer? (Tick off each statement). I feel my relationship with my partner/wife has become closer. Disagree very much 3% This applies to most Danes (56%) and fewest Norwegians (46%). Disagree 8% Neither/ nor 30% Agree 34% Agree very much 17% /not relevant in my case 9% Do you agree or disagree with the following statements concerning your well-being, as to social and family relations, since you were diagnosed with prostate cancer? (Tick off each statement). I feel my relationship with my partner/wife has become closer. Total Denmark Norway Finland Sweden Disagree very much 3% 2% 2% 1% 4% 5% 3% 2% 2% Disagree 8% 5% 10% 9% 9% 7% 9% 8% 7% Neither/ nor 30% 28% 34% 28% 29% 32% 31% 29% 26% Agree 34% 36% 36% 40% 30% 27% 34% 34% 36% Agree very much 17% 20% 10% 13% 18% 22% 16% 17% 14% 80+ /not relevant in my case 9% 8% 8% 8% 11% 8% 8% 10% 15% Total 5,966 1,618 1, , ,273 2, Page 95 of 121

96 I feel less close to my partner/wife Do you agree or disagree with the following statements concerning your well-being, as to social and family relations, since you were diagnosed with prostate cancer? (Tick off each statement). I feel less close to my partner/wife. After being diagnosed with prostate cancer, 10% of the respondents feel less close to their partner/wife. There are only slight variations among the countries. Disagree very much Disagree 31% 33% Neither/ nor 18% Agree 8% Agree very much 2% /not relevant in my case 8% Do you agree or disagree with the following statements concerning your well-being, as to social and family relations, since you were diagnosed with prostate cancer? (Tick off each statement). I feel less close to my partner/wife. Total Denmark Norway Finland Sweden Disagree very much 31% 28% 24% 24% 38% 33% 30% 31% 29% Disagree 33% 36% 39% 40% 26% 29% 33% 33% 36% Neither/ nor 18% 19% 19% 19% 17% 20% 19% 18% 14% Agree 8% 6% 9% 8% 7% 8% 8% 7% 6% Agree very much 2% 2% 2% 2% 3% 3% 2% 2% 2% 80+ /not relevant in my case 8% 8% 8% 7% 9% 7% 7% 9% 13% Total 5,907 1,601 1, , ,269 2, Page 96 of 121

97 23.6. The disease has exerted a negative influence on my family 14% of the respondents feel that the disease has exerted a negative influence on their family. This applies mostly for Swedes (19%) and least for Finns (7%). Do you agree or disagree with the following statements concerning your well-being, as to social and family relations, since you were diagnosed with prostate cancer? (Tick off each statement). The disease has exerted a negative influence on my family. Disagree very much 24% Disagree 37% Neither/ nor 20% Agree 11% Agree very much 3% /not relevant in my case 5% Do you agree or disagree with the following statements concerning your well-being, as to social and family relations, since you were diagnosed with prostate cancer? (Tick off each statement). The disease has exerted a negative influence on my family. Total Denmark Norway Finland Sweden Disagree very much 24% 24% 21% 26% 26% 23% 25% 24% 24% Disagree 37% 41% 44% 48% 27% 31% 37% 37% 41% Neither/ nor 20% 20% 19% 14% 22% 24% 20% 20% 15% Agree 11% 10% 10% 5% 14% 15% 11% 10% 9% Agree very much 3% 2% 2% 2% 5% 4% 3% 2% 2% 80+ /not relevant in my case 5% 4% 4% 5% 6% 4% 4% 6% 7% Total 5,958 1,613 1, , ,269 2, Page 97 of 121

98 23.7. I feel I have a shorter fuse and that I'm more hot-tempered than before I became ill 20% of the respondents feel that they have a shorter fuse and that they are more hottempered than before they became ill. This applies to most Finns (25%) and to fewest Danes and Swedes (18%). Do you agree or disagree with the following statements concerning your wellbeing, as to social and family relations, since you were diagnosed with prostate cancer? (Tick off each statement). I feel I have a shorter fuse and that I'm more short-tempered than before I became ill. Disagree very much Disagree 25% 31% Neither/ nor 19% Agree 16% Agree very much 4% /not relevant in my case 4% Do you agree or disagree with the following statements concerning your well-being, as to social and family relations, since you were diagnosed with prostate cancer? (Tick off each statement). I feel I have a shorter fuse and that I'm more hot-tempered than before I became ill. Total Denmark Norway Finland Sweden Disagree very much 25% 24% 17% 18% 33% 28% 26% 25% 25% Disagree 31% 34% 38% 33% 26% 26% 32% 31% 34% Neither/ nor 19% 22% 19% 19% 18% 22% 20% 20% 17% Agree 16% 15% 21% 21% 14% 20% 16% 17% 14% Agree very much 4% 3% 3% 4% 4% 2% 4% 3% 4% 80+ /not relevant in my case 4% 2% 3% 6% 5% 3% 3% 4% 7% Total 6,004 1,610 1, , ,276 2, Page 98 of 121

99 24. With whom, other than your doctor, do/did you mainly discuss your disease? With whom, other than your doctor, do/did you mainly discuss your disease? (If relevant, tick off more than one box). Other than their doctor, most respondents mainly discuss their disease with their partner/wife. Thus 85% state that apart from the doctor they mainly discuss their disease with their partner/wife. My partner/my wife My children 48% 85% 48% mainly talk to their children. 48% mainly talk to their friends. 35% mainly talk to other prostate-cancer patients. 23% mainly talk to other family members. 17% mainly talk to their patients association. My friends Other prostate-cancer patients Other family members The patients association 17% 23% 35% 48% 14% mainly talk to their colleagues. There are significant variations among the countries, thus 50% of the Finns mainly talk to other prostate-cancer patients, whereas this only applies to 23% of the Danes. My colleagues A support group 5% 14% I don't/didn't want to discuss it 4% My girl friends 4% Please see the table on the following page. No one Others 3% 2% A psychologist or counsellor 2% A social worker 2% A priest or the similar 1% 1% Page 99 of 121

100 With whom, other than your doctor, do/did you mainly discuss your disease? (If relevant, tick off more than one box). Total Denmark Norway Finland Sweden 80+ My partner/my wife 85% 87% 82% 87% 84% 85% 86% 85% 82% My children 48% 51% 45% 47% 47% 40% 48% 48% 50% My friends 48% 47% 49% 54% 45% 50% 51% 47% 38% Other prostate-cancer patients 35% 23% 36% 50% 38% 24% 33% 39% 34% Other family members 23% 28% 24% 22% 19% 29% 25% 20% 18% The patients assocation 17% 17% 24% 15% 16% 9% 15% 21% 18% My colleagues 14% 13% 16% 16% 11% 34% 18% 8% 7% A support group 5% 3% 1% 15% 4% 4% 4% 6% 6% I don't/didn't want to discuss it 4% 3% 4% 3% 5% 3% 3% 4% 9% My girl friends 4% 5% 5% 8% 2% 4% 5% 4% 2% No one 3% 3% 5% 2% 4% 3% 3% 3% 6% A psychologist or counsellor 2% 3% 2% 3% 1% 6% 3% 1% 0% A social worker 2% 0% 0% 3% 2% 4% 1% 1% 2% A priest or the similar 1% 1% 1% 3% 1% 1% 1% 1% 1% Others 2% 2% 2% 2% 2% 2% 2% 2% 2% 1% 1% 1% 1% 1% 0% 1% 1% 1% Total 6,316 1,667 1,086 1,013 2, ,316 2, * Basis: All respondents having answered. Page 100 of 121

101 SEX LIFE Page 101 of 121

102 25. Collectively: Problems experienced after having received treatment for prostate cancer? Collectively: Problems experienced after having received treatment for prostate cancer? (Percentages having answered Agree to the following options) The prostate-cancer treatment has considerable impact on the respondents' sex life: 87% experience problems with the ability to get an erection. The ability to get an erection 87% 79% experience problems with the ability to function sexually and 71% getting an orgasm. 31% were no longer sexually active when they began the prostate-cancer treatment. The ability to get an orgasm 71% The ability to function sexually 79% I was no longer sexually active when I began treatment 31% Page 102 of 121

103 25.1. The ability to get an erection Problems experienced after having received treatment for prostate cancer? (Tick off each statement). The ability to get an erection. After having received prostate-cancer treatment, 87% of the respondents have experienced problems with the ability to get an erection. There are only slight variations among the countries. Agree 87% Disagree 9% 4% Problems experienced after having received treatment for prostate cancer? (Tick off each statement). The ability to get an erection. Total Denmark Norway Finland Sweden Agree 87% 88% 91% 86% 85% 85% 87% 89% 79% Disagree 9% 8% 7% 9% 10% 10% 9% 8% 10% 4% 4% 2% 5% 5% 5% 5% 3% 10% Total 5,909 1,543 1, , ,206 2, Page 103 of 121

104 25.2. The ability to get an orgasm Problems experienced after having received treatment for prostate cancer? (Tick off each statement). The ability to get an orgasm. After having received prostate-cancer treatment, 71% of the respondents have experienced problems with the ability to get an orgasm. There are only slight variations among the countries. Agree 71% Disagree 22% 7% Problems experienced after having received treatment for prostate cancer? (Tick off each statement). The ability to get an orgasm. Total Denmark Norway Finland Sweden 80+ Agree 71% 69% 70% 75% 70% 58% 68% 75% 71% Disagree 22% 24% 26% 17% 22% 35% 25% 19% 15% 7% 7% 4% 8% 8% 7% 7% 6% 15% Total 5,811 1,525 1, , ,186 2, Page 104 of 121

105 25.3. The ability to function sexually Problems experienced after having received treatment for prostate cancer? (Tick off each statement). The ability to function sexually. After having received prostate-cancer treatment, 79% of the respondents have experienced problems with the ability to function sexually. There are only slight variations among the countries. Agree 79% Disagree 15% 7% Problems experienced after having received treatment for prostate cancer? (Tick off each statement). The ability to function sexually. Total Denmark Norway Finland Sweden 80+ Agree 79% 78% 82% 80% 77% 76% 79% 80% 74% Disagree 15% 15% 13% 13% 16% 17% 15% 14% 13% 7% 7% 5% 7% 8% 6% 7% 6% 13% Total 5,844 1,535 1, , ,188 2, Page 105 of 121

106 25.4. I was no longer sexually active when I began treatment Problems experienced after having received treatment for prostate cancer? (Tick off each statement). I was no longer sexually active when I began treatment. 31% of the respondents were no longer sexually active when they began their prostate-cancer therapy. This applies to most respondents in Norway (54%) and fewest in Denmark and Sweden (23%). Agree 31% Disagree 62% 7% Problems experienced after having received treatment for prostate cancer? (Tick off each statement). I was no longer sexually active when I began treatment. Total Denmark Norway Finland Sweden Agree 31% 23% 54% 37% 23% 15% 23% 35% 48% Disagree 62% 69% 40% 57% 69% 77% 71% 58% 41% 7% 7% 6% 6% 8% 8% 7% 6% 10% Total 5,727 1,507 1, , ,137 2, Page 106 of 121

107 . 26. Do you agree or disagree with the following statements concerning your sex life after having received prostate-cancer therapy? I'm satisfied with my sex life Do you agree or disagree with the following statements concerning your sex life after having received prostate-cancer therapy? (Tick off each statement). I'm satisfied with my sex life. After having received prostate-cancer therapy, 60% of the respondents are dissatisfied with their sex life. This applies to most Norwegians (67%) and fewest Finns (57%). Disagree very much Disagree 29% 31% Neither/ nor 19% Agree 13% Agree very much 3% 4% Do you agree or disagree with the following statements concerning your sex life after having received prostate-cancer therapy? (Tick off each statement). I'm satisfied with my sex life. Total Denmark Norway Finland Sweden Disagree very much 29% 26% 32% 23% 33% 32% 31% 29% 24% Disagree 31% 33% 35% 34% 27% 30% 31% 31% 29% Neither/ nor 19% 20% 18% 17% 19% 14% 18% 20% 21% Agree 13% 14% 11% 17% 13% 15% 13% 14% 13% Agree very much 3% 3% 1% 4% 4% 4% 4% 3% 3% 4% 4% 3% 5% 5% 5% 3% 4% 10% Total 5,872 1,536 1, , ,197 2, ** Due to language inconsistencies in the wording of this question in the original questionnaire in the four countries, any direct comparisons between the countries should be made with caution. 80+ Page 107 of 121

108 26.2. I consider my absent desire for sex to be a major problem Do you agree or disagree with the following statements concerning your sex life after having received prostate-cancer therapy? (Tick off each statement). I consider my absent desire for sex to be a major problem. 36% of the respondents consider their absent desire for sex, after having received prostatecancer therapy, to be a major problem Disagree very much 13% There are only slight variations among the countries. Disagree 25% Neither/ nor 21% Agree 24% Agree very much 12% 4% Do you agree or disagree with the following statements concerning your sex life after having received prostate-cancer therapy? (Tick off each statement). I consider my absent desire for sex to be a major problem. Total Denmark Norway Finland Sweden Disagree very much 13% 11% 10% 8% 19% 17% 15% 11% 10% Disagree 25% 25% 27% 27% 22% 27% 24% 25% 22% Neither/ nor 21% 23% 21% 19% 21% 17% 21% 22% 23% Agree 24% 22% 29% 30% 21% 23% 22% 26% 26% Agree very much 12% 13% 11% 10% 13% 9% 13% 12% 9% 4% 5% 3% 5% 4% 6% 4% 4% 9% Total 5,792 1,517 1, , ,183 2, **Due to language inconsistencies in the wording of this question in the original questionnaire in the four countries, any direct comparisons between the countries should be made with caution Page 108 of 121

109 I'm frustrated by my absent desire for sex Do you agree or disagree with the following statements concerning your sex life after having received prostate-cancer therapy? (Tick off each statement). I'm frustrated by my absent desire for sex. After having received prostate-cancer therapy, 39% of the respondents are frustrated by their absent desire for sex. Disagree very much 14% This applies to most Finns (46%) and to fewest Swedes (36%). Disagree 23% Neither/ nor 19% Agree 27% Agree very much 12% 5% Do you agree or disagree with the following statements concerning your sex life after having received prostate-cancer therapy? (Tick off each statement). I'm frustrated by my absent desire for sex. Total Denmark Norway Finland Sweden 80+ Disagree very much 14% 12% 10% 9% 20% 19% 16% 12% 11% Disagree 23% 25% 26% 22% 20% 22% 22% 24% 25% Neither/ nor 19% 21% 18% 18% 19% 17% 19% 20% 18% Agree 27% 25% 32% 36% 23% 25% 25% 29% 26% Agree very much 12% 12% 11% 10% 13% 10% 13% 11% 9% 5% 6% 4% 5% 5% 7% 4% 4% 11% Total 5,767 1,512 1, , ,184 2, ** Due to language inconsistencies in the wording of this question in the original questionnaire in the four countries, any direct comparisons between the countries should be made with caution. Page 109 of 121

110 26.4. I'm worried that my absent desire is frustrating to my partner/wife Do you agree or disagree with the following statements concerning your sex life after having received prostate-cancer therapy? (Tick off each statement). I'm worried that my absent desire is frustrating to my partner/wife. After having received prostate-cancer therapy, 33% of the respondents are worried that their absent desire is frustrating to their partner/wife Disagree very much 15% This applies to most Norwegians (42%) and to fewest Swedes (25%). Disagree 23% Neither/ nor 20% Agree 24% Agree very much 9% 9% Do you agree or disagree with the following statements concerning your sex life after having received prostate-cancer therapy? (Tick off each statement). I'm worried that my absent desire is frustrating to my partner/wife. Total Denmark Norway Finland Sweden Disagree very much 15% 11% 8% 9% 22% 19% 15% 13% 14% Disagree 23% 23% 24% 22% 23% 19% 22% 24% 24% Neither/ nor 20% 22% 18% 20% 20% 16% 20% 21% 16% Agree 24% 26% 31% 31% 18% 24% 24% 23% 24% Agree very much 9% 9% 11% 10% 7% 11% 11% 8% 6% 9% 9% 8% 8% 11% 10% 8% 10% 15% Total 5,760 1,509 1, , ,186 2, **Due to language inconsistencies in the wording of this question in the original questionnaire in the four countries, any direct comparisons between the countries should be made with caution. 80+ Page 110 of 121

111 INFORMATION AND GUIDANCE Page 111 of 121

112 27. From where do you get information about prostate cancer? 68% of the respondents get information from their respective patients association. From where do you get information about prostate cancer? (If relevant, tick off more than one box). The patients association 68% 48% seek information from an urologist, whereas 40% get information from the internet. A urologist 48% 34% seek information from a hospital doctor, and 29% from their GP. 27% seek information in information leaflets, whereas 25% get information from fellow prostate-cancer patients. Nurses (19%), news media (16%), the hospital (14%), an oncologist (13%) and medical literature (12%) likewise constitute essential sources of information. The differences among the countries are significant. Thus 11% of Swedish respondents seek information from their GP, whereas the same applies to as many as 60% of the Finns. The internet A hospital doctor My GP Information leaflets Other prostate-cancer patients Nurses The news media The hospital An oncologist Medical literatur 40% 34% 29% 27% 25% 19% 16% 14% 13% 12% Please see the table on the following page. The pharmaceutical industry Other A sex therapist I don't want any information A psychologist 3% 2% 2% 1% 0% 0% Page 112 of 121

113 From where do you get information about prostate cancer? (If relevant, tick off more than one box). Total Denmark Norway Finland Sweden The patients association 68% 75% 68% 73% 62% 60% 69% 70% 66% An urologist 48% 33% 43% 55% 57% 46% 48% 48% 49% The internet 40% 46% 37% 40% 36% 69% 48% 35% 20% A hospital doctor 34% 53% 35% 17% 28% 38% 35% 34% 31% My GP 29% 28% 44% 60% 11% 25% 28% 29% 33% Information leaflets 27% 25% 23% 23% 31% 30% 27% 27% 27% Other prostate-cancer patients 25% 17% 24% 37% 25% 21% 26% 26% 21% Nurses 19% 16% 11% 16% 25% 23% 20% 19% 18% The news media 16% 15% 12% 15% 18% 20% 16% 16% 16% The hospital 14% 22% 13% 9% 12% 21% 15% 14% 11% An oncologist 13% 10% 12% 9% 16% 11% 12% 13% 11% Medical literature 12% 8% 11% 13% 14% 11% 10% 13% 15% The pharmaceutical industry 3% 2% 2% 3% 5% 2% 3% 3% 4% A sex therapist 2% 1% 3% 4% 1% 4% 2% 2% 0% I don't want any information 0% 0% 0% 1% 0% 0% 0% 0% 1% A psychologist 0% 0% 0% 0% 0% 1% 0% 0% 0% Other 2% 2% 2% 1% 3% 4% 2% 2% 2% 1% 1% 1% 1% 1% 0% 1% 1% 2% Total 6,314 1,671 1,088 1,010 2, ,313 2, * Basis: All respondents having answered. 80+ Page 113 of 121

114 28. Do you need information about the following? Do you need information about the following? (If relevant, tick off more than one box). 72% need information about new therapeutic options. 54% need information about sex life and relationships for prostate-cancer patients. New therapeutic options 72% 49% need information about prostate cancer and therapeutic options. There are only slight variations among the countries. Sex life and relationships for prostatecancer patients Prostate cancer and therapeutic options 54% 49% Do you need information about the following? (If relevant, tick off more than one box). Total Denmark Norway Finland Sweden New therapeutic options 72% 74% 65% 75% 73% 67% 68% 74% 82% 80+ Sex life and relationships for prostate-cancer patients Prostate cancer and therapeutic options 54% 51% 58% 51% 55% 71% 64% 49% 27% 49% 50% 50% 51% 47% 49% 46% 50% 56% Total 4,774 1, , ,793 2, * Basis: All respondents having answered. Page 114 of 121

115 29. Would you be interested in receiving s concerning the study results from the survey and information about the treatment of prostate cancer? Would you be interested in receiving s concerning the study results from the survey and information about the treatment of prostate cancer? 66% of the respondents would be interested in receiving s concerning the study results from the survey and information about the treatment of prostate cancer. Most Danish respondents would like to receive an (75%) and fewest Swedes (60%). In Finland this option was not available. Yes 66% No 34% Would you be interested in receiving s concerning the study results from the survey and information about the treatment of prostate cancer? Total Denmark Norway Finland Sweden Yes 66% 75% 67% - 60% 70% 69% 63% 57% No 34% 25% 33% - 40% 30% 31% 37% 43% Total 5,004 1, , ,972 2, Page 115 of 121

116 30. Are you a member of a patients association? Are you a member of a patients association (PROPA/PROPO/PROFO/Prostatacancerförbundet)? (Tick off). Collectively, 86% of the respondents are members of a patients association. Broken down by country, the figures are as follows: Yes 83% Denmark: 92% Norway: 93% Finland: 86% Sweden: 78% No Another patients' association 3% 14% Are you a member of a patients association (PROPA/PROPO/PROFO/Prostatacancerförbundet)? (Tick off). Total Denmark Norway Finland Sweden 80+ Yes 83% 91% 92% 85% 73% 69% 81% 85% 88% No 14% 8% 7% 14% 22% 27% 16% 13% 10% Another patients' association 3% 1% 1% 1% 5% 3% 3% 3% 2% Total 6,126 1,661 1, , ,291 2, Page 116 of 121

117 DEMOGRAPHIC QUESTIONS Page 117 of 121

118 . 31. What is your occupation? What is your occupation? (Tick off). 75% of the respondents are old-age pensioners. Old-age pensioner 75% 13% are wage/salary earners, and 5% are self-employed. The occupation of the respondents varies in the four countries. Thus, with 82%, the number of old-age pensioners is highest in Finland and lowest in Denmark, with 67%. Wage/salary earner Self-employed Disability retirement Early retirement or transitional allowance 13% 5% 2% 2% Flexijob or semi retirement 1% Unemployed 1% Other 1% What is your occupation? (Tick off). Total Denmark Norway Finland Sweden 80+ Old-age pensioner 75% 67% 70% 82% 78% 3% 62% 94% 94% Wage/salary earner 13% 16% 17% 6% 11% 69% 18% 0% 0% Self-employed 5% 7% 4% 1% 5% 12% 6% 3% 1% Disability retirement 2% 2% 5% 3% 1% 4% 4% 1% 3% Early retirement or transitional allowance 2% 4% 1% 1% 2% 2% 5% 1% 1% Flexijob or semi retirement 1% 1% 1% 4% 0% 3% 2% 0% 1% Unemployed 1% 0% 0% 2% 1% 4% 1% 0% 0% Other 1% 3% 2% 1% 1% 3% 2% 1% 1% Total 6,124 1,642 1, , ,286 2, Page 118 of 121