Prostate cancer The  patients ’   voice Vincent GRIESSER MD Lugano, 13th May 2011 Educational Cancer Convention Lugano Wha...
Plan <ul><ul><li>Patients ’  voice </li></ul></ul><ul><ul><li>2. Adverse events and patients ’  needs </li></ul></ul><ul><...
Plan <ul><ul><li>Patients ’  voice </li></ul></ul><ul><ul><li>2. Adverse events and patients ’  needs </li></ul></ul><ul><...
Patient ’ s  voice (1) <ul><ul><ul><li>Alan ’ s  testimony * :   </li></ul></ul></ul><ul><ul><ul><li>Since I was operated ...
Patients ’  voice (2) <ul><ul><ul><li>Christian's testimony* :  </li></ul></ul></ul><ul><ul><ul><li>Since I was operated f...
Patients ’  voice (3) <ul><ul><ul><li>John ’ s testimony* :  </li></ul></ul></ul><ul><ul><ul><li>My prostate cancer was at...
Plan <ul><ul><li>1. Patients ’  voice </li></ul></ul><ul><ul><li>2. Adverse events and patients ’  needs </li></ul></ul><u...
Prostate cancer : adverse events (1) <ul><li>Psychological shock (cancer = death threat) </li></ul><ul><li>Urinary inconti...
<ul><li>The patient is not alone, there is his  spouse , his  companion , … </li></ul><ul><li>She/he lives his/her  own cr...
Patients ’  needs (1) <ul><li>Globaly : </li></ul><ul><li>Quantity  of life is different of  quality  of life </li></ul><u...
Patients ’  needs (2) <ul><li>Preventive measures  to fulfill patients ’ s needs : </li></ul><ul><li>Address very openly  ...
Plan <ul><ul><li>1. Patients ’  voice </li></ul></ul><ul><ul><li>2. Adverse events and patients ’  needs </li></ul></ul><u...
 
Europa Uomo <ul><li>European coalition against prostate diseases </li></ul><ul><li>Created in Rome in 2002 </li></ul><ul><...
Main goals <ul><li>Develop european and global  network </li></ul><ul><li>Contribute to the provision of  best treatment a...
Some lines of work (1) <ul><li>Smart and early detection </li></ul>To give support to patients to choose the best treatmen...
<ul><li>Helpline support  by telephone and e-mail was set up to men with prostate cancer, wives, partners and people who  ...
Training and intervision of volunteers <ul><li>A  training course  was given to men with prostate cancer who wanted to bec...
<ul><li>Reception area with discussions  related to disease without taboo  </li></ul><ul><li>Forum for discussion on exper...
www.europa-uomo.ch Thank you for your attention www.prosca.net
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ECCLU 2011 - V. Griesser - Prostate cancer: Locally advanced disease and patient advocacy - Europa Uomo: The patients’ voice

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  • ECCLU 2011 - V. Griesser - Prostate cancer: Locally advanced disease and patient advocacy - Europa Uomo: The patients’ voice

    1. 1. Prostate cancer The patients ’ voice Vincent GRIESSER MD Lugano, 13th May 2011 Educational Cancer Convention Lugano What's New and What's True in Genito-Urinary Oncology?
    2. 2. Plan <ul><ul><li>Patients ’ voice </li></ul></ul><ul><ul><li>2. Adverse events and patients ’ needs </li></ul></ul><ul><ul><li>3. Patients ’ associations : goals and activities </li></ul></ul>
    3. 3. Plan <ul><ul><li>Patients ’ voice </li></ul></ul><ul><ul><li>2. Adverse events and patients ’ needs </li></ul></ul><ul><ul><li>3. Patients ’ associations : goals and activities </li></ul></ul>
    4. 4. Patient ’ s voice (1) <ul><ul><ul><li>Alan ’ s testimony * : </li></ul></ul></ul><ul><ul><ul><li>Since I was operated for prostate cancer, I am not any more sick but I wet my trousers all the time. </li></ul></ul></ul><ul><ul><ul><li>I get up having eaten out, the chair is wet, my pants are dipped, it flows along my legs …. </li></ul></ul></ul><ul><ul><ul><li>As I drink little, it smells strong, it stinks .... </li></ul></ul></ul><ul><ul><ul><li>I shall not return to the restaurant. It is better to stay at home. I am cured of the cancer but my social life is ruined …. </li></ul></ul></ul>* Fictitious first name
    5. 5. Patients ’ voice (2) <ul><ul><ul><li>Christian's testimony* : </li></ul></ul></ul><ul><ul><ul><li>Since I was operated for prostate cancer, I am no longer sick but I am not any more a man …. </li></ul></ul></ul><ul><ul><ul><li>What do you want to make with a chipolata between legs ? </li></ul></ul></ul><ul><ul><ul><li>How do you want to stimulate an organ which is almost dead ? My wife is closed to me every day and nevertheless so far …. </li></ul></ul></ul><ul><ul><ul><li>I am a man who wets his trousers, who smells bad and who has nothing more between legs but I am cured …. </li></ul></ul></ul>* Fictitious first name
    6. 6. Patients ’ voice (3) <ul><ul><ul><li>John ’ s testimony* : </li></ul></ul></ul><ul><ul><ul><li>My prostate cancer was at an advanced stage. Therefore I didn ’ t had surgery. I have radiotherapy and hormone treatment ... </li></ul></ul></ul><ul><ul><ul><li>I took weight, I have hot flashes, I have enlarged breasts … I ’ m ashamed of my body and do not go any more from my home … </li></ul></ul></ul>* Fictitious first name
    7. 7. Plan <ul><ul><li>1. Patients ’ voice </li></ul></ul><ul><ul><li>2. Adverse events and patients ’ needs </li></ul></ul><ul><ul><li>3. Patients ’ associations : goals and activities </li></ul></ul>
    8. 8. Prostate cancer : adverse events (1) <ul><li>Psychological shock (cancer = death threat) </li></ul><ul><li>Urinary incontinence </li></ul><ul><li>Erectile dysfonction </li></ul><ul><li>Loss of fertility, of ejaculation and of libido </li></ul><ul><li>Bowel dysfonction </li></ul><ul><li>Change of body image, loss of bone density </li></ul><ul><li>Pain </li></ul><ul><li>Depression, etc… </li></ul>
    9. 9. <ul><li>The patient is not alone, there is his spouse , his companion , … </li></ul><ul><li>She/he lives his/her own crisis </li></ul><ul><li>This puts a great strain on the relationship of the couple </li></ul>Prostate cancer : adverse events (2)
    10. 10. Patients ’ needs (1) <ul><li>Globaly : </li></ul><ul><li>Quantity of life is different of quality of life </li></ul><ul><li>Patients need : </li></ul><ul><ul><li>time </li></ul></ul><ul><ul><li>information of good quality </li></ul></ul><ul><ul><li>support </li></ul></ul><ul><ul><li>expertise (multidisciplinary meeting) </li></ul></ul><ul><ul><li>to make up their mind of the best treatment for themselves </li></ul></ul>
    11. 11. Patients ’ needs (2) <ul><li>Preventive measures to fulfill patients ’ s needs : </li></ul><ul><li>Address very openly sexual and intimate issues </li></ul><ul><li>Recommend active surveillance when possible </li></ul><ul><li>Physiotherapy before and after surgery * </li></ul><ul><li>Proactively recommend support (i.e. peer support, psychosocial support, etc.) </li></ul>* Castille Y, l ’ opéré de prostatectomie radicale totale, informations concernant la rééducation fonctionnelle destinée aux patients, Cliniques universitaires de St-Luc, 2 ème édition
    12. 12. Plan <ul><ul><li>1. Patients ’ voice </li></ul></ul><ul><ul><li>2. Adverse events and patients ’ needs </li></ul></ul><ul><ul><li>3. Patients ’ associations : goals and activities </li></ul></ul>
    13. 14. Europa Uomo <ul><li>European coalition against prostate diseases </li></ul><ul><li>Created in Rome in 2002 </li></ul><ul><li>23 members countries </li></ul><ul><li>Chairman : Tom Hudson </li></ul><ul><li>Secretary : Louis Denis </li></ul>
    14. 15. Main goals <ul><li>Develop european and global network </li></ul><ul><li>Contribute to the provision of best treatment and care of those affected by prostate cancer </li></ul><ul><li>P rovide support in order to relieve distress of persons affected by prostate cancer </li></ul><ul><li>Give access and provide information of high quality * about prostate cancer, its treatments and available support services </li></ul><ul><li>* validated , accessible, understandable </li></ul>
    15. 16. Some lines of work (1) <ul><li>Smart and early detection </li></ul>To give support to patients to choose the best treatment Active surveillance Rehabilitation Management of adverse events Providing supportive care Supportive care Smart detection Choice for treatment Surveillance active Palliative treatments Hormonotherapy Chemotherapy Management of adverses events Treatments Surgery Radiotherapy Rehabilitation Europa Uomo CH ‘ s commitment :
    16. 17. <ul><li>Helpline support by telephone and e-mail was set up to men with prostate cancer, wives, partners and people who are concerned , and those who want to know more </li></ul><ul><li>Peer support is given by volunteers who have themselves been affected by prostate cancer and who have personal experience of the main treatments and stages of prostate cancer </li></ul><ul><li>A HOTLINE was set up in collaboration with the Geneva Cancer league </li></ul>Peer support
    17. 18. Training and intervision of volunteers <ul><li>A training course was given to men with prostate cancer who wanted to become volunteers for peer support (8 sessions – 25 hours) </li></ul><ul><li>The main goals of this course were : </li></ul><ul><ul><li>to improve communication skills (to listen, to reformulate) </li></ul></ul><ul><ul><li>to prevent individual projection </li></ul></ul><ul><ul><li>to manage their own emotions </li></ul></ul><ul><ul><li>Monthly group intervision (supervision) </li></ul></ul>
    18. 19. <ul><li>Reception area with discussions related to disease without taboo </li></ul><ul><li>Forum for discussion on experiences of men affected by prostate cancer </li></ul><ul><li>Animated by peers </li></ul><ul><ul><li>confidentiality </li></ul></ul><ul><ul><li>no medical advice </li></ul></ul><ul><ul><li>no therapeutic goal </li></ul></ul>Peer support : «the Prostate-cafés»
    19. 20. www.europa-uomo.ch Thank you for your attention www.prosca.net

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