RE9 RE9 RE12 RE12 RE13 RE13 RE10 RE10 RE11 RE11 F8 F8 F5 F5 F6 F6 F7 F7 S7 S7 S5 S5 S4 S4 S3 S3 S1 S1 S2 S2 RE8 RE8 RE5 RE5 RE6 RE6 RE7 RE7 F4 F4 RE1 RE1 F1 F1 L9 L9 D9 D9 L1 L1 D2 D2 I Consult and exam Urologist Anamnesis DRE TRUS Risk calculat... IConsult and examUrologist· Anamnesis· DRE· TRUS · Risk calculator (Prostaatwijzer) · Questionnaire D1 D1 R3 R3 I Consult and exam GP Anamnesis Physical exam Risk calculator... IConsult and examGP· Anamnesis· Physical exam · Risk calculator (Prostaatwijzer) · Informs patient on exams, PSA and risk profile (Prostaatwijzer) R1 R1 Metro Map: Prostate cancer Metro Map: Prostate cancer Layer Metro LayerMetro Layer Information + Layer Companions LayerInformation+LayerCompanions Layer Experience LayerExperience Layer Context LayerContext Pt. Theme: To be taken more seriously More and more patients ... Pt. Theme: To be taken more seriouslyMore and more patients are requesting a PSA test on their own initiative as they are confronted with prostate cancer in their environment (relatives and/or friends). These patients want to be in time to discover the disease. Some patients experience resistance from their doctor and feels as if they are not taken seriously (e.g. a GP who thinks a PSA test is not needed for them). 01 01 Legend Legend Step without participation or presence of the patient (e.g. M... Step without participation or presence of the patient (e.g. MC- Multidisciplinary consult) Treatment step Treatment step Consultation – discussion with patient (possibility to change... Consultation – discussion with patient (possibility to change path) Discussion with patient and planned SDM-moment. (possibility ... Discussion with patient and planned SDM-moment. (possibility to change path) Phase transfer: patient will continue path in another Metro l... Phase transfer: patient will continue path in another Metro line Stop: patient stops treatment Stop: patient stops treatment Switch-over in Metro Line: patient switches to another phase ... Switch-over in Metro Line: patient switches to another phase in the current Metro Line Switch-over to another Metro Line: Patient switches to anothe... Switch-over to another Metro Line: Patient switches to another Metro Line Duration Duration NR NR Visit hospital/care institution Visit hospital/care institution x days x days Treatment path of the patient Treatment path of the patient Transfer to other phase Transfer to other phase MM MM 2x 2x Treatment step that is repeated several times Treatment step that is repeated several times The goal of this Metro Map is to describe the curative part o... The goal of this Metro Map is to describe the curative part of the patient pathway from the early signs up to the end of the pathway. It is based on guidelines and analysis of the current situation.References:· European Association of Urology (2022) Prostate Cancer. https://uroweb.org/guideline/prostate-cancer. Accessed: April 2022. · Integraal Kankercentrum Nederland (2021). Oncoguide (Prostaatcarcinoom). https://oncoguide.nl/#!/projects/20/guideline. Accessed: April 2022. · Parker C.,Castro C., Fizazi K. Heidenreich A., Ost P, Procopio G., Tombal B. & Gillessen S. (2020). Prostate cancer: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Annals of Oncology. 30(p):1119-1134. https://doi.org/10.1016/j.annonc.2020.06.011 Colours Colours Orange: Trial Orange: Trial Lila: Follow up Lila: Follow up Dark blue: Proton therapy Dark blue: Proton therapy Green: Immunotherapy Green: Immunotherapy Blue green: Radiotherapy Blue green: Radiotherapy Fuchsia: Operation Fuchsia: Operation Light green: Chemotherapy Light green: Chemotherapy MM Blue: 3rd line diagnostics MM Blue: 3rd line diagnostics Sky blue: 2nd line diagnostics Sky blue: 2nd line diagnostics Gold: 1st line diagnostics Gold: 1st line diagnostics Team: Date: Version: 3.00 Team:Date: 28/03/2023Version:3.00 * The meaning of these colours are suggestions, you are free ... * The meaning of these colours are suggestions, you are free to change them if needed. R2 R2 R4 R4 D3 D3 D4 D4 D5 D5 D6 D6 D7 D7 D8 D8 D10 D10 D11 D11 D12 D12 D13 D13 L2 L2 L3 L3 L4 L4 L5 L5 L6 L6 L7 L7 L8 L8 First signs and referral First signs and referral Screening GP For men with elevated risk Screening GP For men with elevated risk First symptoms Patient Symptoms LPC/LAPC Weak/interrupted uri... First symptomsPatient Symptoms LPC/LAPC· Weak/interrupted urine flow · Urinate frequently at night· Blood in urine/seminal fluid· Onset erectile dysfunction · Discomfort/pain sittingSymptoms mHSPC · Pain in the back, hips, thighs, shoulders, or other bones· Fluid build-up in legs/feet· Unexplained weight loss· Fatigue· Change in bowel habits II PSA testing GP Blood test to detect elevated Prostate spec... IIPSA testingGP· Blood test to detect elevated Prostate specific antigent (PSA)· Preferabely multiple PSA tests are done, over a period of 6 to 12 weeks Referral Referral Other carepath Other carepath Diagnosis Diagnosis Transfer GP to urologist Patient is referred to urologist at ... TransferGP to urologistPatient is referred to urologist at the outpatient clinic. II (opt.) PSA testing Urologist Blood test to detect elevated... II(opt.) PSA testingUrologistBlood test to detect elevated PSA. III (opt.) Urine testing Urologist Urine test to detect PcA3-... III(opt.) Urine testingUrologistUrine test to detect PcA3-gen. IV (opt.) Uroflowmetry test Urologist Test to evaluate functi... IV(opt.) Uroflowmetry testUrologistTest to evaluate functioning of the urinary tract. Discuss outcome Urologist Urologist informs patient on test r... Discuss outcomeUrologistUrologist informs patient on test results and on additional diagnostic steps. NR NR Referral back to GP, Repeat PSA after 2 years Referral back to GP,Repeat PSA after 2 years Other carepath Other carepath mpMRI Radiologist Scan to create a more detailed picture of t... mpMRIRadiologist· Scan to create a more detailed picture of the prostate· Update risk calculator (Prostaatwijzer)· Inform patient on biopsy and optional PSMA PET/CT-scan Stop Stop WW WW Watchfull waiting Watchfull waiting Biopsy PA Investigation of the tissue to determine the Gleaso... BiopsyPAInvestigation of the tissue to determine the Gleason score. · Transperinal (preferred) or transrectal · Targeted or MRI-guided (or less preferabel systematic)· In high risk patients a PSMA-PET/CT scan is done to determine the Gleason grade. High risk is defined as: · PSA: >20 · Volume: ≥ CT2c/CT3 (based on DRE, TRUS & MRI) · Biopt pattern: ≥4Discuss patient preferences regarding communication (e.g. results via phone). Low risk Low risk Intermediate & high risk Intermediate& high risk PSMA-PET/CT scan Radiologist Scan to determine TNM stage Upda... PSMA-PET/CT scanRadiologist· Scan to determine TNM stage· Update risk calculator (Prostaatwijzer) I CT scan Radiologist Scan to determine TNM stage. ICT scanRadiologistScan to determine TNM stage. II Bone scan Radiologist Scan to detect the presence of metas... IIBone scanRadiologist· Scan to detect the presence of metastases in the bones · Update risk calculator (Prostaatwijzer) I Consult diagnosis Urologist Discussing diagnosis, staging a... IConsult diagnosisUrologistDiscussing diagnosis, staging and treatment options with the patient. II (opt.) Consult nurse Nurse specialist Additional informati... II(opt.) Consult nurseNurse specialistAdditional information on diagnosis, staging and treatment options. MOC Urologist, radiotherapist, oncologist, specialist oncolog... MOCUrologist, radiotherapist, oncologist, specialist oncology nurse, research nurse, oncology nurse, radiologist, pathologist, PA, nuclear physician (optional) Discussion on diagnosis and treatment options.· Diagnosis & staging· Frailty, age, comorbidities · Patient preferences I Consult advice MOC Urologist The urologist informs the pati... IConsult advice MOCUrologistThe urologist informs the patient on the advice of the MOC regarding treatment. II Consideration Patient & informal caregiver Optional second... II ConsiderationPatient & informal caregiver· Optional second opinion · Information seeking· Preparing decision talk I (opt.) Consult urologist Urologist Discussing radical prost... I(opt.) Consult urologistUrologistDiscussing radical prostatectomy. II (opt.) Consult radio- therapist Radiotherapist Discussing ... II (opt.) Consult radio-therapist Radiotherapist Discussing radiotherapy (RT). Depending on hospital & treatment options:· The patient is seen by the urologist, the radiotherapist or both · D12 and D13 will take place on the same day M1 M1 Metastatic disease Metastatic disease I Treatment decision Urologist/radiotherapist Patient and car... ITreatment decisionUrologist/radiotherapistPatient and caregiver decide on treatment. II Consult nurse Nurse specialist Discussing treament decisio... II Consult nurseNurse specialist· Discussing treament decision and planning · Information on lifestyle & excercise program · Fracture risk score If a dexa-scan is indicated based on the fracture risk score: · Information on dexa-scan ADT ADT Start ADT Start ADT (opt.) Supportive treatment Physiotherapist Pelvic physiother... (opt.) Supportive treatmentPhysiotherapist· Pelvic physiotherapy* Supportive treatment can also be given/be continued after treatment. I PSA test Urologist (surgeon) Evaluation of Nadir PSA. IPSA testUrologist (surgeon)Evaluation of Nadir PSA. ADT ADT Start ADT Start ADT II Consult Urologist (surgeon) Evaluate treatment and disease... II Consult Urologist (surgeon) Evaluate treatment and disease with patient. Radical prostatectomy (optional) pelvic lymphadetectomy Urolo... Radical prostatectomy(optional) pelvic lymphadetectomyUrologist (surgeon)Surgery to remove the prostate with(out) lymphnodes and/or seed blisters. Initial local treatment Initial local treatment 6,12,18 or 24 months 6,12,18 or 24 months 6 to 8 weeks 6 to 8 weeks After 3,9 & 15 months After 3,9 & 15 months After 6 weeks and after 3 months After 6 weeksand after 3 months Follow up Follow up (opt.) Transfer back to original urologist Treating physician... (opt.) Transfer back to original urologistTreating physician to initial UurologistPatients can be referred back to their initial urologist. (Opt.) Transfer to specialised urologist Urologist to urologi... (Opt.) Transfer to specialised urologistUrologist to urologistPatient might be referred to a specialised urologist. (opt.) Adjuvant ADT Urologist For high/intermediate risk ADT ... (opt.) Adjuvant ADTUrologistFor high/intermediate risk ADT can be given.· Zoladex (Gloserin) · Decapeptyl (Tritorelin) Radiotherapy Radiotherapist Radiotherapy treament. RadiotherapyRadiotherapistRadiotherapy treament. Stereotactic therapy Radiotherapist In case of oligometases, ... Stereotactic therapyRadiotherapistIn case of oligometases, the metastases are treated with stereotactic therapy. I PSA test Radiotherapist Evaluation of Nadir PSA. IPSA testRadiotherapistEvaluation of Nadir PSA. II Consult Radiotherapist Evaluate treatment and disease with... II Consult Radiotherapist Evaluate treatment and disease with patient. Transfer Transfer F2 F2 F3 F3 RE2 RE2 3x 3x 2x 2x Persistant PC/ Oligo- metastasis Persistant PC/ Oligo- metastasis I PSA test Urologist Evaluation of PSA. IPSA testUrologistEvaluation of PSA. Optional transfer Urologist to GP In case of longterm progres... Optional transfer Urologist to GP In case of longterm progression free, the patient will be referred back the GP for follow-up. I PSA test GP Evaluation of PSA. IPSA testGPEvaluation of PSA. II Consult Urologist Discuss PSA results Evaluate clinical si... II Consult Urologist· Discuss PSA results · Evaluate clinical signs II Consult GP Follow-up consult. II Consult GP Follow-up consult. PSA rise / clinical signs PSA rise / clinical signs PSA rise / clinical signs PSA rise / clinical signs Restaging Restaging Transfer Transfer Stable for longer period Stable forlonger period RE3 RE3 RE4 RE4 3x 3x PSMA-PET/CT scan Radiologist Scan to determine TNM stage Upda... PSMA-PET/CT scanRadiologist· Scan to determine TNM stage· Update risk calculator (Prostaatwijzer) I CT scan Radiologist Scan to determine TNM stage. ICT scanRadiologistScan to determine TNM stage. II Bone scan Radiologist Scan to detect the presence of metas... IIBone scanRadiologist· Scan to detect the presence of metastases in the bones · Update risk calculator (Prostaatwijzer) I Consult diagnosis Urologist Discussing diagnosis, staging a... IConsult diagnosisUrologistDiscussing diagnosis, staging and treatment options with the patient. II (opt.) Consult nurse Nurse specialist Additional informati... II(opt.) Consult nurseNurse specialistAdditional information on diagnosis, staging and treatment options. MOC Urologist, radiotherapist, oncologist, specialist oncolog... MOCUrologist, radiotherapist, oncologist, specialist oncology nurse, research nurse, oncology nurse, radiologist, pathologist, PA, nuclear physician (optional) Discussion on diagnosis and treatment options.· Diagnosis & staging· Frailty, age, comorbidities · Patient preferences I Consult advice MOC Urologist The urologist informs the pati... IConsult advice MOCUrologistThe urologist informs the patient on the advice of the MOC regarding treatment. II Consideration Patient & informal caregiver Optional second... II ConsiderationPatient & informal caregiver· Optional second opinion · Information seeking· Preparing decision talk M1 M1 Metastatic disease Metastatic disease WW WW Watchfull waiting Watchfull waiting AS AS Active surveillance Active surveillance FT FT Focal therapy: HIFU/ local cryoablation Focal therapy:HIFU/ local cryoablation I Treatment decision Urologist Patient and caregiver decide o... ITreatment decisionUrologistPatient and caregiver decide on treatment. II Consult nurse Nurse specialist Discussing treament decisio... II Consult nurseNurse specialist· Discussing treament decision and planning. · Information on lifestyle & excercise program · Fracture risk score If a dexa-scan is indicated based on the fracture risk score: · Information on dexa-scan AS AS Active surveillance for low risk Active surveillancefor low risk WW WW Watchfull waiting for low risk Watchfull waitingfor low risk ADT ADT ADT for not-metastatic disease in case RT or RP is not applic... ADT for not-metastatic disease in case RT or RP is not applicable and risk for progression is high (rare) Transfer Hospital A & B External beam RT Brachytherapy In cas... TransferHospital A & B· External beam RT · BrachytherapyIn case of oligometastases:Hospital A· Stereotactic therapy Radiotherapy Radiotherapy Transfer Hospital C Robotic surgery to remove prostate +/- pe... TransferHospital C · Robotic surgery to remove prostate +/- pelvic lymph nodes Radical prostatectomy Radical prostatectomy (Opt.) Transfer to specialised urologist Urologist to urologi... (Opt.) Transfer to specialised urologistUrologist to urologistPatient might be referred to a specialised urologist. Transfer Hospital C Robotic surgery to remove prostate +/- pe... TransferHospital C · Robotic surgery to remove prostate +/- pelvic lymph nodes Procedure is difficult to perform because of the effects of RT to the prostate gland. Radical prostatectomy Radical prostatectomy Local salvage treatment Local salvage treatment Exceptional Exceptional Transfer Hospital A & B External beam RT Brachytherapy Hospit... TransferHospital A & B· External beam RT · BrachytherapyHospital D · High-dose-rate brachytherapyIn case of oligometastases: · Stereotactic therapy Salvage RT (+/- ADT) Salvage RT (+/- ADT) (opt.) Supportive treatment Physiotherapist Pelvic physiother... (opt.) Supportive treatmentPhysiotherapist· Pelvic physiotherapySupportive treatment can also be given/be continued after treatment. I PSA test Urologist (surgeon) Evaluation of Nadir PSA. IPSA testUrologist (surgeon)Evaluation of Nadir PSA. ADT ADT Start ADT Start ADT II Consult Urologist (surgeon) Evaluate treatment and disease... II Consult Urologist (surgeon) Evaluate treatment and disease with patient. Radical prostatectomy (optional) pelvic lymphadetectomy Urolo... Radical prostatectomy(optional) pelvic lymphadetectomyUrologist (surgeon)Surgery to remove the prostate with(out) lymphnodes and/or seed blisters. 2x 2x After 6 weeks and after 3 months After 6 weeksand after 3 months Persistant PC Persistant PC S6 S6 (opt.) Commitant ADT (rare) Urologist Zoladex (Gloserin) Deca... (opt.) CommitantADT (rare)Urologist· Zoladex (Gloserin) · Decapeptyl (Tritorelin)· Panoralim Radiotherapy Radiotherapist Radiotherapy treament. RadiotherapyRadiotherapistRadiotherapy treament. 20 -30x 20 -30x S8 S8 (opt.) Transfer back to original urologist Treating physician... (opt.) Transfer back to original urologistTreating physician to initial urologist Patients can be referred back to their initial urologist. I PSA test Radiotherapist Evaluation of Nadir PSA. IPSA testRadiotherapistEvaluation of Nadir PSA. 3x 3x Persistant PC Persistant PC ADT ADT Start ADT Start ADT Persistant PC Persistant PC II Consult Radiotherapist Discuss PSA results Evaluate treatm... II Consult Radiotherapist · Discuss PSA results · Evaluate treatment · Evaluate clinical signs*In case of salvage radiotherapy after initial radiotherapy, follow-up at the radiotherapist will continue for 5 years. Follow up Follow up Transfer Transfer I PSA test Urologist Evaluation of PSA. IPSA testUrologistEvaluation of PSA. Optional transfer Urologist to GP In case of longterm progres... Optional transfer Urologist to GP In case of longterm progression free, the patient will be referred back the GP for follow-up. I PSA test GP Evaluation of PSA. IPSA testGPEvaluation of PSA. II Consult Urologist Discuss PSA results Evaluate clinical si... II Consult Urologist· Discuss PSA results · Evaluate clinical signs Indication for recurrent PC Indication for recurrent PC Transfer Transfer Stable for longer period Stable forlonger period 3x 3x II Consult GP Discuss PSA results Evaluate clinical signs II Consult GP · Discuss PSA results · Evaluate clinical signs Restaging Restaging I CT scan Radiologist Scan to determine TNM stage. Update ris... ICT scanRadiologist· Scan to determine TNM stage.· Update risk calculator (Prostaatwijzer) II Bone scan Radiologist Scan to detect the presence of metas... IIBone scanRadiologist· Scan to detect the presence of metastases in the bones · Update risk calculator (Prostaatwijzer) I Consult diagnosis Urologist Discussing diagnosis, staging a... IConsult diagnosisUrologistDiscussing diagnosis, staging and treatment options with the patient. II (opt.) Consult nurse Urology nurse Additional information ... II(opt.) Consult nurseUrology nurseAdditional information on diagnosis, staging and treatment options. MOC Urologist, radiotherapist, oncologist, specialist oncolog... MOCUrologist, radiotherapist, oncologist, specialist oncology nurse, research nurse, oncology nurse, radiologist, pathologist, PA, nuclear physician (optional) Discussion on diagnosis and treatment options.· Diagnosis & staging· Frailty, age, comorbidities · Patient preferences Consult advice MOC Urologist The urologist informs the patien... Consult advice MOCUrologistThe urologist informs the patient on the advice of the MOC regarding treatment. M1 M1 Metastatic disease Metastaticdisease Pt. Theme: Stopovers in the referral process Some patients ar... Pt. Theme: Stopovers in the referral processSome patients are referred multiple times (GP to a urologist to a specialist urologist to a radiologist ...). This can be experienced as unnecessary steps in the process. Direct referral to a specialised prostate clinic is mentioned as an improvement in patient experience. “ The GP did not want to do it at first; he said I was too yo... “The GP did not want to do it at first; he said I was too young, but I persisted.(Patient) ” “ It would be better if you would be referred directly to the... “It would be better if you would be referred directly to the Prostate clinic, without any stopovers. Comparable to Mamma care; one place where everything is centralised. (Partner of a patient) ” Pt. Theme: The diagnostic consult Patient experiences regardi... Pt. Theme: The diagnostic consultPatient experiences regarding the diagnostic consult differ. A lack if empathy or time for clarification are mentioned as factors causing a bad experience. A complementary consult withe the nurse (specialist) is named as an element that can improve the experience of the diagnostic consult. Pt. Theme: A reassuring explanation Due to circumstances, pat... Pt. Theme: A reassuring explanationDue to circumstances, patients might receive a diagnosis without clarification (e.g. information is already available in the medical file or consult time is too short). The clarification will only be given later on. This can cause a lot of stress. Patients tend to search for answers online and might run into information that is incorrect or not applicable to their personal situation. Pt. Theme: Discomfort of the biopsy Several patients mention ... Pt. Theme: Discomfort of the biopsySeveral patients mention discomfort of the biopsy as a negative experience. “ What are you doing here? The urologist said.(...) I couldn'... “What are you doing here? The urologist said.(...) I couldn't answer, it was my GP who had referred me to the urologist. (Patient) ” “ The urologist explained: I'm really sorry sir, but I will h... “The urologist explained: I'm really sorry sir, but I will have to refer you to the oncologist, because the cancer you have, is not currable. However we can treat it really well! But eventually it will be mortal. (Patient) ” “ It helps when patients are well informed in preparation of ... “It helps when patients are well informed in preparation of their consult at the urologist, as they tend to be more open to the information of the urologist. (Urologist) ” “ When patients come for their biopsy, we ask them whether th... “When patients come for their biopsy, we ask them whether they want to receive the result by phone or in a consult at the clinic. However in another clinic, will always receive their diagnosis by phone. We get back from patients that this is considered unpleasant. (Radiotherapist ) ” “ We had to wait for a week, we looked for information online... “We had to wait for a week, we looked for information online. We had already discussed; if it is malignant, we will have it removed. (...) Than the doctor told us, surgery was not save in his situation. (Partner of a patient) ” “ They thought there was a metastasis, but they could not fin... “They thought there was a metastasis, but they could not find it. So they had to go for surgery. (When asking whether radiation was discussed) Radiation is done in [name other hospital], I think, but in [name treating hospital] the specialists love to do surgery.(Patient) ” “ I asked my doctor: In my situation; what would you do? He d... “I asked my doctor: In my situation; what would you do? He did not want to answer that question.(Patient) ” “ The doctor said I had 3 options; wait and see, radiation th... “The doctor said I had 3 options; wait and see, radiation therapy and surgery. He advised me to take some time to consider. I did not have to think about it.(Patient) ” Pt. Theme: Reassurance through action Patients or relatives t... Pt. Theme: Reassurance through actionPatients or relatives tend to be scared to wait and see, knowing that the cancer is inside their bodies. The idea of undertaking action to treat it, reassures them. When they do decide to wait, regular blood tests help to feel reassured. Pt. Theme: Shared decision making Some patients find it hard ... Pt. Theme: Shared decision makingSome patients find it hard to decide between radiotherapy and radical prostatectomy, others have a strong preference. Sometimes patients have a strong preference, but learn this option is not applicable for them (e.g. because of comorbidities or the location of the tumour). A clear argumentation that comes with the advice of the care team; helps them to feel empowered to co-decide. Pt. Theme: The perceived treatment burden Some patients menti... Pt. Theme: The perceived treatment burdenSome patients mention they dread radiotherapy because of the many hospital visit. Pt. Theme: The actual treatment burden Treatment itself can b... Pt. Theme: The actual treatment burdenTreatment itself can be very discomforting for patients (e.g. Empty bowels, but filled bladder. Pt. Theme: Perceived idea of having the tumor removed At firs... Pt. Theme: Perceived idea of having the tumor removedAt first, patients have the idea that having the prostate removed will give them the best chance for the cancer to stay away. However a clear and calm explanation can shift this initial perception. Pt. Theme: Short term recovery vs long term effects Short ter... Pt. Theme: Short term recovery vs long term effectsShort term side effects are considered as part.of recovery and are therefore considered less burdensome (e.g. Incontinence or impotence). Pt. Theme: Support in dealing with impact on sexuality and ma... Pt. Theme: Support in dealing with impact on sexuality and masculinityMultiple patients mention they underestimated the impact of treatment on sexuality and masculinity. However these topics have been discussed up front; they do not grasp the real impact on their lives. Most patients and their partners tend to find a way to cope, however several patients mention that they are seeking additional support to deal with the impact on sexuality. Pt. Theme: Recognizing the role of the informal carer During ... Pt. Theme: Recognizing the role of the informal carerDuring Covid, it happened that the partner of a patient was not allowed to accompany the patient to a consult or treatment. This can be hard for both patients and their partner. Patients and partners express that they are in this together and partners want to be involved. The relationship with the partner can change. Pt. Theme: Unforseen complications Some patients experience s... Pt. Theme: Unforseen complicationsSome patients experience severe complications that have a far-reaching impact on their wellbeing and daily life. Complications after surgery or (late) complications after radiation can cause pain and discomfort. Pt. Theme: Uncertainty about the decisions they have made Som... Pt. Theme: Uncertainty about the decisions they have madeSome patients express that they keep overthinking the consequences of the decision they made regarding treatment. Fact is that they will never know. “ The radiation thereapy was very uncomfortable. Especially t... “The radiation thereapy was very uncomfortable. Especially to have your bowel cleared. When the bowel was not empty the patient needed dress himself again, walk passed the waiting room to the toilet. Try to empty the bowel without empting the bladder (really hard). And then go back the radiation room. Hoping this time it was ok.(Patient) ” “ I wanted surgery, have the prostate removed. I thought when... “I wanted surgery, have the prostate removed. I thought when the prostate is removed the cancer can not come back. However, I learned this was not true and surgery was not possible because of my heart problems. I went for radiation and it turned out to be really effective.(Patient) ” “ We dreaded that we would have to go the hospital 36 times f... “We dreaded that we would have to go the hospital 36 times for radiation therapy. I did not know how we would manage.(Partner of a patient) ” “ 2 years after the radiation, as a late consequence of radia... “2 years after the radiation, as a late consequence of radiation, I suddenly experienced bleedings.(Patient) ” “ Sometimes I ask myself, what if I would have chosen not to ... “Sometimes I ask myself, what if I would have chosen not to treat it...we wouldn't have struggled with all the sexual issues we have now.(Patient)” “ I had to stay in the lobby. I planned to do some work their... “I had to stay in the lobby. I planned to do some work their, but I couldn't cope. I found myself a place to lay down and have a nap. (É) You are in this together; this affects more than the patient alone.(Partner of a patient)” Pt. Theme: Reassurance Most patients who were diagnosed and t... Pt. Theme: Reassurance Most patients who were diagnosed and treated for LPC/LAPC felt reassured by their urologist and feel confident that the cancer is well treated and will not return after surgery or radiation therapy. They do want to have their PSA checked on a regular basis. Supervision can be at the GP or at the urologist. “ They mentioned this up front; but I guess I did not realise... “They mentioned this up front; but I guess I did not realise how far-reaching the impact would be.(Patient) ” “ It would have been helpful if there was support later on in... “It would have been helpful if there was support later on in the proces, when you really are dealing with the impact.(Patient and partner)” “ I do not worry about the future. A rise in PSA would come a... “I do not worry about the future. A rise in PSA would come as a surprise to me. I am confident.(Patient) ” Diagnosis Diagnosis First: Urologist Contact: Urology nurse spec. Planner: Urolog... First: UrologistContact: Urology nurse spec.Planner: Urology nurse spec.24/7: 112 (alarm) Radiotherapy Radiotherapy First: Radiotherapist Contact: Nurse specialist Planner: Nurs... First: RadiotherapistContact: Nurse specialistPlanner: Nurse specialist24/7: ? Follow-up Follow-up First: Urologist Contact: Urology nurse spec. Planner: Urolog... First: UrologistContact: Urology nurse spec.Planner: Urology nurse spec.24/7: Urology department Restaging Restaging First: Urologist Contact: Urology nurse spec. Planner: Urolog... First: UrologistContact: Urology nurse spec.Planner: Urology nurse spec.24/7: Urology department Radical prostatectomy Radical prostatectomy First: Urologist (surgeon) Contact: Urology nurse spec. Plann... First: Urologist (surgeon)Contact: Urology nurse spec.Planner: Urology nurse spec.24/7: Urology department Follow-up (GP) Follow-up (GP) First: General practitioner Contact: Assistant GP Planner: As... First: General practitionerContact: Assistant GPPlanner: Assistant GP24/7: 112 (alarm) Follow-up Follow-up First: Urologist Contact: Urology nurse spec. Planner: Urolog... First: UrologistContact: Urology nurse spec.Planner: Urology nurse spec.24/7: Urology department Restaging Restaging First: Urologist Contact: Urology nurse spec. Planner: Urolog... First: UrologistContact: Urology nurse spec.Planner: Urology nurse spec.24/7: Urology department Follow-up (GP) Follow-up (GP) First: General practitioner Contact: Assistant GP Planner: As... First: General practitionerContact: Assistant GPPlanner: Assistant GP24/7: 112 (alarm) Radiotherapy Radiotherapy First: Radiotherapist Contact: Nurse specialist Planner: Nurs... First: RadiotherapistContact: Nurse specialistPlanner: Nurse specialist24/7: ? Radical prostatectomy Radical prostatectomy First: Urologist (surgeon) Contact: Urology nurse spec. Plann... First: Urologist (surgeon)Contact: Urology nurse spec.Planner: Urology nurse spec.24/7: Urology department Results and advice PSA test and risk calculator Results and advicePSA test and risk calculator Care path information I Consult and advice 01. Metroline Diag... Care path informationI Consult and advice· 01. Metroline Diagniostic at the urologist · 02. Companions Diagniostic at the urologist Patient tools A. Prepare a consult Patient tools· A. Prepare a consult In case of referral: In case of referral: In case of start further diagnosis: In case of start further diagnosis: Results and advice Test results and indication for additional... Results and adviceTest results and indication for additional diagnostics Care path information I Consult and exam 01. Metro Line Diagn... Care path informationI Consult and exam· 01. Metro Line Diagnosis · 02. Companions Diagnosis · 03. Practical information about the hospital Results and advice Information on biopsy and PSMA PET/CT-scan Results and adviceInformation on biopsy and PSMA PET/CT-scan Results and advice Communication preferences Results and adviceCommunication preferences Results and advice I Consult diagnosis II Consult nurse Resul... Results and adviceI Consult diagnosisII Consult nurse· Results of diagnostics exams · Diagnosis and stage· Treatment options · Optional referral Care path information II Consult nurse 04. About prostate can... Care path informationII Consult nurse · 04. About prostate cancer · 05. Metro Network treatment options Patient tools II Consult nurse B. Dealing with cancer C. Deci... Patient toolsII Consult nurse · B. Dealing with cancer · C. Decision making In case of referral to other centre: In case of referral to other centre: Care path information I Consult 03. Practical information abo... Care path informationI Consult · 03. Practical information about the hospital Results and advice I Consult advice MOC Advices of the MOC Results and adviceI Consult advice MOC· Advices of the MOC In case of clinical trial In case of clinical trial Patient tools I Consult advice MOC D. Taking part in a clinic... Patient toolsI Consult advice MOC · D. Taking part in a clinical trial For all patients, but specified to treatment For all patients, but specified to treatment Care path information II Consult nurse 06. Metroline treatmen... Care path informationII Consult nurse · 06. Metroline treatment · 02. Companions· 07. Medications & devices· 08. Alarm signals · 09. Lifestyle Patient tools II Consult nurse E. Organising for treatment Patient toolsII Consult nurse · E. Organising for treatment In case of supportive treatment In case of supportive treatment Care path information 06. Metroline treatment 02. Companions Care path information· 06. Metroline treatment · 02. Companions In case of PSA rise/clinical signs In case of PSA rise/clinical signs Care path information I Consult 01. Metroline Diagnosis 02. C... Care path informationI Consult · 01. Metroline Diagnosis · 02. Companions · 03. Practical information about the hospital Results and advice Diagnosis Treatment options Results and advice· Diagnosis · Treatment options Care path information II Consult nurse 05. Metronetwork treat... Care path informationII Consult nurse · 05. Metronetwork treatment options Patient tools [II step reference] Explanation Listing item Patient tools[II step reference]Explanation· Listing item 20-30x 20-30x Results and advice I Consult advice MOC Advices of the MOC Results and adviceI Consult advice MOC· Advices of the MOC In case of clinical trial In case of clinical trial Patient tools I Consult advice MOC D. Taking part in a clinic... Patient toolsI Consult advice MOC · D. Taking part in a clinical trial For all patients, but specified to treatment For all patients, but specified to treatment Care path information II Consult nurse 06. Metroline treatmen... Care path informationII Consult nurse · 06. Metroline treatment · 02. Companions· 07. Medications & devices· 08. Alarm signals · 09. Lifestyle Patient tools II Consult nurse E. Organising for treatment Patient toolsII Consult nurse · E. Organising for treatment In case of referral to other centre In case of referral to other centre Care path information II Consult nurse 03. Practical informat... Care path informationII Consult nurse · 03. Practical information about the hospital Results and advice Advices of the MOC Results and adviceAdvices of the MOC Results and advice I Consult diagnosis II Consult nurse Diagn... Results and adviceI Consult diagnosisII Consult nurse· Diagnosis· Treatment options Care path information II Consult nurse 05. Metro Network trea... Care path informationII Consult nurse · 05. Metro Network treatment options Patient tools II Consult nurse C. Decision making Patient toolsII Consult nurse · C. Decision making Referral GP GP discusses result of PSA testing and risk calcu... ReferralGPGP discusses result of PSA testing and risk calculator and refers patient to the urologist for further diagnostics.