Introduction The National Swedish Kidney Cancer Register (NSKCR) was launched in 2005. It is used for health care quality improvement and research. The aim of this study was to validate the register's data quality by assessing the timeliness, completeness, comparability and validity of the register. Material and Methods To assess timeliness we evaluated the number of days between date of diagnosis and date of reporting the patient to the NSKCR. For completeness, we used data on number of cancer cases reported to the NSKCR compared to cases reported to the Swedish Cancer Register. Comparability was evaluated by reviewing coding routines and comparing data collected in the NSKCR to national and international guidelines. Validity was assessed by reabstraction of data from medical charts from 431 randomly selected patients diagnosed in 2007, 2010, 2013 and 2016. Results Timeliness has improved since the register started. In 2016, 76.9% and 96.5% of the patients were reported within 6 and 12 months respectively. Completeness was high, with a 99.5% coverage between 2008 and 2017. Registration forms and manuals were updated according to national and European guidelines. Improvements have been made continuously to decrease the risk of reporting mistakes and misunderstandings. Validity was high where a majority of the variables demonstrated an exact agreement >90% and few missing values. Conclusion Overall, the data quality of the NSKCR is high. Completeness, comparability and validity is high. Timeliness can be further improved, which will make it easier to follow changes and improve the care and research of RCC patients.

PURPOSE:End-stage renal disease (ESRD) is a known risk factor for the development of renal cell carcinoma (RCC). This case-control study was performed to assess the risk in a nationwide cohort and evaluate tumor characteristics and survival in the ESRD-RCC population. METHODS:In this study, 9,299 patients with RCC identified in the National Swedish Kidney Cancer Register from 2005 until 2014 and 93,895 matched controls were linked to the Swedish Renal Registry and the National Patient Register. ESRD was defined as chronic kidney disease stage 5, kidney transplantation or kidney dialysis 0-40 years before the diagnosis of RCC. RESULTS:A total of 117 patients with ESRD and subsequent RCC were identified and compared with 9,087 patients with RCC. There was a 4.5-times increased risk for RCC among ESRD patients (95% CI = 3.6-5.6; p < 0.001) compared to matched controls. Longer time with ESRD increased the risk of RCC (ESRD > 9 years, OR = 10.2, 95% CI = 7.0-14.8). The ESRD-RCC patients were younger (p = 0.002), had smaller tumors (p < 0.001) and had lower tumor stage (p = 0.045). The incidence of papillary and chromophobe RCC was higher and clear cell RCC lower among the ESRD patients (p < 0.001). The 5-year overall survival was 50% in ESRD-RCC patients and 63% in RCC-only patients (p < 0.05). CONCLUSION:More than 9 years with ESRD increased the risk of developing RCC 10-times compared to individuals without ESRD and the tumors showed a different histopathological pattern. Despite a less advanced tumor stage at diagnosis, the overall survival in ESRD-RCC patients was lower compared to patients with RCC-only.

Background Recently, the CARMENA and SURTIME studies, suggested that upfront cytoreductive nephrectomy (CN) should be abandoned for patients with intermediate and high-risk metastatic renal cell carcinoma (mRCC). However, CN remains an indication in low-risk and when immediate systemic treatment is not required. The aim was to evaluate the long-term overall survival (OS) in patients with primary mRCC, based on the first line treatment. Methods There were 1483 patients with primary mRCC in the National Kidney Cancer Registry from 2005 to 2013. Data on primary treatment, TNM stage, RCC type, tumor size, patient age and sex were extracted. Survival time was calculated from time of diagnosis to time of death or until July 2019. Mann-Whitney U and Chi-square tests, the Kaplan-Meyer method and Cox regression analyses were used. Results Patients primary treated with CN had a significantly longer OS (p < .001) than patients primary treated with systemic therapy or palliation. In a Cox regression multivariate analysis, the hazard ratio for CN compared with no CN was 1.600, 95%Ci (1.492 - 1.691),p < .001. Also occurrence of lymph node metastases, T-stage, patients age and year of diagnosis, remained as independent predictors of OS. Conclusion Patients primary treated with CN survived significantly longer than patients primary treated with systemic therapy or palliation, in all age groups. CN was an important first-line treatment option in mRCC patients.

Introduction: In 2005, the National Swedish Kidney Cancer Register (NSKCR) was set up to collect data on newly diagnosed patients with renal cell carcinoma (RCC). In 2015, the NSKCR was linked to a number of national healthcare and demographic registers to construct the Renal Cell Cancer Database Sweden (RCCBaSe). The aim was to facilitate research on trends in incidence, effects of treatment and survival, with detailed data on tumour characteristics, treatment, pharmaceutical prescriptions, socioeconomic factors and comorbidity.Material and methods: All patients registered in the NSKCR between 2005 and 2014 were included. For each case, ten controls and first-degree relatives for cases and controls were identified. The RCCBaSe was created linking all cases, controls and first-degree relatives to a number of national registers with information on co-morbidity, socioeconomic factors and pharmaceutical prescriptions.Results: Between 2005 and 2014, a total of 9,416 patients with RCC were reported to the NSKCR. 94,159 controls and a total cohort of 575,007 individuals including cases, controls and first-degree relatives were identified. Linkage to the Swedish cancer register resulted in 106,772 matches. When linked to the National patient register, 432,677 out-patient and 471,359 in-patient matches were generated. When linked to the Swedish renal registry 1,778 matches were generated. Linkage to the Prescribed drug register resulted in 448,084 matches and linkage to the The Longitudinal integration database for health insurance and labour market studies database resulted in 450,017 matches.Conclusion: By linking the NSKCR to several Swedish national databases, a unique database for RCC research has been created.

Abstract Objective: To compare bleeding and transfusion rate between patients who undergo standard transurethral resection of the prostate (TURP) and patients who undergo DRY CUT® TURP. Materials and methods: A retrospective comparison was made of 626 patients who underwent a standard monopolar TURP during 2004–2007 at the Karolinska University Hospital Huddinge with 620 patients who underwent monopolar DRY CUT® TURP during 2011–2014 at the same clinic. Transfusion rate, perioperative bleeding, prostate volume, resection weight, use of anticoagulation therapy, presence of prostate cancer, whether the operation was performed by a specialist doctor in urology or a resident and length of hospital stay were evaluated. Results: The median bleeding was 300 ml (IQR = 100–645 ml) in the group of patients who underwent standard TURP compared to 75 ml (IQR 30–268 ml) in the DRY CUT® TURP group. The bleeding quotient for standard TURP was 2.3-times the perioperative bleeding for DRY CUT® TURP. In a logistic regression model the patients who underwent standard TURP were more likely to undergo blood transfusion compared to DRY CUT® TURP (OR = 3.18, 95% CI = 1.72–5.88). The results were not affected by adjustment for patient age, presence of prostate cancer, anticoagulation therapy or operation performed by a specialist in urology. However, the resection weight did influence the bleeding quotient. Conclusions: The shift from standard TURP to DRY CUT® TURP has decreased the perioperative bleeding and need for blood transfusion at our hospital.

Objective: The aim of this investigation was to study differences between male and female patients with stage T1 urinary bladder cancer (UBC) regarding intravesical instillation therapy, second resection and survival. Materials and methods: This study included all patients with non-metastatic primary T1 UBC reported to the Swedish National Register of Urinary Bladder Cancer (SNRUBC) from 1997 to 2014, excluding those treated with primary cystectomy. Differences between groups were evaluated using chi-squared tests and logistic regression, and survival was investigated using Kaplan-Meier and log-rank tests and Cox proportional hazards analysis. Results: In all, 7681 patients with T1 UBC (77% male, 23% female) were included. Females were older than males at the time of diagnosis (median age at presentation 76 and 74 years, respectively; p < .001). A larger proportion of males than females underwent intravesical instillation therapy (39% vs 33%, p<.001). Relative survival was lower in women aged >= 75 years and women with G3 tumours compared to men. However, women aged >= 75 years who had T1G3 tumours and underwent second resection followed by intravesical instillation therapy showed a relative survival equal to that observed in men. Conclusions: This population-based study demonstrates that women of all ages with T1 UBC undergo intravesical instillation therapy less frequently than men, and that relative survival is poorer in women aged >= 75 years than in men of the same age when intravesical instillation therapy and second resection are not used. However, these disparities may disappear with treatment according to guidelines.

Background:The aim of this study was to describe age at presentation, treatment and cancer-specific survival in patients with urinary bladder cancer (UBC) in a populationbased cohort, with special reference to patients 75years or older.Methods: All primary UBC patients with urothelial pathology reported to the Swedish National Registry of Urinary Bladder Cancer (SNRUBC) from 1997 to 2014 were included in the study.Groups were compared regarding age at diagnosis, primary treatment and survival.Results: A substantial proportion of the patients were diagnosed with UBC late in life; 10.7% of the men and 15.0% of the women were aged >85 ys at presentation.In the group of patients with T1 UBC, the patients aged 75ys or older were less often treated with intravesical installation therapy (p<0.001).The patients aged 75ys or older with T1 UBC had an inferior cancer-specific survival (p<0.001) compared to younger patients. Conclusion:In this population-based cohort comprising virtually all patients diagnosed with UBC in Sweden, age 75 ys or older is associated with an inferior proportion of patients who undergo intravesical instillation therapy.Age 75 ys or older is also associated with an inferior cancer-specific survival in urinary bladder cancer.

Abstract Objective: The aim of this investigation was to describe tumour characteristics, treatments and survival in patients with urinary bladder cancer (UBC) in a national population-based cohort, with special reference to gender-related differences. Material and methods: All primary UBC patients with urothelial pathology reported to the Swedish National Registry of Urinary Bladder Cancer (SNRUBC) from 1997 to 2011 were included in the study. Groups were compared regarding tumour, node, metastasis classification, primary treatment and survival. Results: In total, 30,310 patients (74.9% male, 25.1% female) with UBC were analysed. A larger proportion of women than men had stage T2–T4 (p < 0.001), and women also had more G1 tumours (p < 0.001). However, compared to women, a larger proportion of men with carcinoma in situ or T1G3 received intravesical treatment with bacillus Calmette–Guérin or intravesical chemotherapy, and a larger proportion of men with stage T2–T4 underwent radical cystectomy (38% men vs 33% women, p < 0.0001). The cancer-specific survival at 5 years was 77% for men and 72% for women (p < 0.001), and the relative survival at 5 years was 72% for men and 69% for women (p < 0.001). Conclusions: In this population-based cohort comprising virtually all patients diagnosed with UBC in Sweden between 1997 and 2011, female gender was associated with inferior cancer-specific and relative survival. Although women had a higher rate of aggressive tumours, a smaller proportion of women than men received optimal treatment.

Objective: The aim of this population-based study was to evaluate the impact of quality indicators on the adherence to guidelines for renal cell carcinoma (RCC). Material and methods: Since 2005, virtually all patients with newly diagnosed RCC in Sweden have been registered in the National Swedish Kidney Cancer Register (NSKCR). The register contains information on histopathology, nuclear grade, clinical stage, preoperative work-up, treatment, recurrence and survival. In addition, a number of quality indicators have been measured in the register aiming to increase the quality of care. The quality indicators are: the coverage of the register, histology reports, preoperative chest computed tomography (CT), partial nephrectomy, laparoscopic surgery, centralization to high-volume hospitals and waiting times. Results: A total of 8556 patients with diagnosed RCC were registered from 2005 to 2013 (99% coverage). In 2013, 99% of the histopathology reports were standardized. The number of patients with preoperatively chest CT increased from 59% in 2005 to 89% in 2013. The proportion of patients with RCC T1aN0M0 who underwent partial nephrectomy increased from 22% in 2005 to 56% in 2013. Similarly, laparoscopic radical nephrectomies increased from 6% in 2005 to 24% in 2013. The median tumour size at detection decreased from 60 mm in 2005 to 55 mm in 2013. The proportion of patients who were incidentally detected increased from 43% in 2005 to 55% in 2013. Conclusions: The data show an improved adherence to the guidelines for RCC as measured by quality indicators and a steady process of earlier detection of patients with RCC.

Purpose: We compared clinical characteristics and cancer specific mortality in men diagnosed with prostate cancer before vs after age 50 years.Materials and Methods: A total of 919 men 35 to 49 years old and 45,098 men 50 to 66 years old who were diagnosed with prostate cancer between 1998 and 2012 were identified in PCBaSe (Prostate Cancer data Base Sweden). Cancer specific mortality was compared among age groups (35 to 49, 50 to 59, 60 to 63 and 64 to 66 years) with and without adjusting for cancer characteristics, comorbidity and education in a multivariable Cox proportional hazards model.Results: Clinical cancer characteristics indicated that most nonmetastatic cancer in men younger than 50 years was detected after prostate specific antigen testing. The proportion of nonmetastatic vs metastatic disease at diagnosis was similar in all age groups. A strong association between younger age and poor prognosis was apparent in men in whom metastatic disease was diagnosed before age 50 to 55 years. The crude and adjusted HRs of cancer specific mortality were 1.41 (95% CI 1.12-1.79) and 1.28 (95% CI 1.01-1.62) in men diagnosed before age 50 and at age 50 to 59 years, respectively. In men with nonmetastatic disease crude cancer specific mortality increased with older age but adjusted cancer specific mortality was similar in all age groups.Conclusions: Our findings suggest that an aggressive form of metastatic prostate cancer is particularly common in men younger than 50 to 55 years. Genetic studies and trials of intensified systemic treatment are warranted in this patient group.

To present the occurrence of metastases and local recurrences in primary non-metastatic patients with renal cell carcinoma (RCC) in a contemporary Swedish population-based cohort.

The aim of this case report is to improve the awareness of this gender dysphoria both for the single patient interest as well as for the community. This is a single-patient case report. Literature search and Internet browsing for forum concerning this subject were performed. Healthcare professionals must be aware of this group of patients as they have a greater risk of self-harm in order to self-castrate, which could be acute and life threatening if not performed in the right way. Hermann M and Thorstenson A. A rare case of male-to-eunuch gender dysphoria. Sex Med 2015;3:331-333.

METHODOLOGY:Since the start in 2005 virtually all patients with newly diagnosed renal cell carcinoma (RCC) in Sweden are reported to the National Swedish Kidney Cancer Register (NSKCR). The register contains information on histopathology, nuclear grade, clinical stage, preoperative work-up, treatment, recurrence, and survival.RESULTS:A total of 8556 patients with newly diagnosed RCC were registered in the NSKCR from 2005 to 2013 resulting in a coverage of 99% as compared to the Swedish Cancer Registry. The mean tumor size at detection decreased from 70 mm in 2005 to 64 mm in 2010. The proportion of patients who were incidentally detected increased. The proportion of patients with tumor stage T1a who underwent partial nephrectomy increased from 22% in 2005 to 56% in 2012. Similarly, the proportion of laparoscopically performed radical nephrectomies increased from 6% in 2005 to 17% in 2010. During the five years of follow-up 20% of the patients had a recurrence.CONCLUSION:Over the last decade there has been a trend of earlier detection and less advanced tumors at detection in patients with RCC. An increasing proportion of the patients undergo laparoscopic and nephron-sparing procedures.

Objective. Tumour characteristics, preoperative work-up and surgical treatment in patients diagnosed with renal cell carcinoma (RCC) between 2005 and 2010, and changes over time were studied in a national population-based cohort. Material and methods. The National Swedish Kidney Cancer Register (NSKCR) contains information on histopathology, Fuhrman grade and clinical stage at presentation, and on the preoperative work-up and surgical treatment of patients with RCC. Between 2005 and 2010, 5553 RCC patients were registered in the NSKCR, 99% of those registered in the National Cancer Registry. Results. During the study period the mean tumour size decreased from 70 to 64 mm (p = 0.024) and the frequency of metastatic RCC decreased from 22% to 15% (p < 0.001). The use of preoperative chest computed tomography increased from 59% to 84%. In total, 4229 (76%) patients were treated with curative intent, 3453 (82%) underwent radical nephrectomy, 606 (14%) partial nephrectomy (PN) and 170 (4%) cryotherapy or radiofrequency ablation. In tumours up to 4 cm, PN was performed in 33% of the surgically treated patients. PN irrespective of size increased from 8% to 20% and laparoscopic nephrectomy increased from 6% to 17% during the period. In patients with metastatic RCC, 55% underwent cytoreductive nephrectomy. Conclusions. The NSKCR explores population-based data on the clinical handling of patients with RCC. This study, between 2005 and 2010, shows significant decrease in tumour size and metastatic RCC at presentation, a more complete preoperative work-up, and significantly increased use of PN and laparoscopic nephrectomy in Sweden.

BackgroundHip fractures are associated with increased mortality and are a known adverse effect of androgen deprivation therapy (ADT) for prostate cancer (PCa). It was our aim to evaluate how mortality after hip fracture is modified by PCa and ADT.MethodsPCa dataBase Sweden (PCBaSe 2.0) is based on the National PCa Register and also contains age and county-matched PCa-free men. We selected all men (n = 14,205) who had been hospitalized with a hip fracture between 2006 and 2010; 2,300 men had a prior PCa diagnosis of whom 1,518 (66%) were on ADT prior to date of fracture. Risk of death was estimated with cumulative incidence and standardized mortality ratios (SMRs) to make comparisons with the entire PCa population and the general population.ResultsCumulative incidences indicated that there was a higher risk of death following a hip fracture for PCa men on ADT than for PCa men not on ADT or PCa-free men, particularly in the first year. The SMRs showed that PCa men on ADT with a hip fracture were 2.44 times more likely to die than the comparison cohort of all PCa men (95%CI: 2.29-2.60). This risk was especially increased during the first month (5.64 (95%CI: 4.16-7.48)). In absolute terms, hip fractures were associated with 20 additional deaths per 1,000 person-years in PCa men not on ADT, but 30 additional deaths per 1,000 person-years for PCa men on ADT, compared to all PCa men.ConclusionHip fractures are associated with higher all-cause mortality in PCa men on ADT than in PCa men not on ADT or PCa-free men, especially within the first three months.

OBJECTIVE:To evaluate the risk of different in-hospital complications for patients undergoing a radical cystectomy (RC), as limited nationwide population data on short- and long-term complications after RC is available, despite it being the standard treatment for localised muscle-invasive urinary bladder cancer (UBC).PATIENTS AND METHODS:In all, 7608 persons underwent a RC after UBC diagnosis, as registered in the Swedish National Patient Register between 1964 and 2008. We estimated the frequency and incidences and calculated hazard ratios (HR) and 95% confidence intervals (CI) using multivariate Cox proportional hazards models.RESULTS:Urinary tract infection/septicaemia was the most common complication following radical cystectomy, with an incidence of 90.4 per 1,000 person years. There was a higher risk of urinary tract infection among patients who had a continent cutaneous reservoir (HR: 1.11 (0.94-1.30) or orthotopic neobladder 1.21 (1.05-1.39) than among those with ileal conduit. Similarly, continent cutaneous reservoir and orthotopic neobladder were associated with increased risks for wound and abdominal wall hernias, stones in the urinary tract, hydronephrosis and nephrostomy tube treatment, and kidney failure. In contrast, risk of bowel obstruction was lower among those with orthotopic neobladder than those with ileal conduit (HR: 0.64 (0.50-0.81)) and those with continent cutaneous reservoir (HR: 0.92 (0.73-1.16).CONCLUSIONS:In-hospital complications after RC are numerous and continue to accumulate for many years after surgery, indicating the need for life-long follow-up of these patients. Comparison between different types of diversion should, however, be made with care because of potential confounding by indication.

Background: Prostate cancer patients have an increased risk of fractures as a consequence of skeletal metastases and osteoporosis induced by endocrine treatment. Data on incidence of fractures and risks in subgroups of men with prostate cancer are sparse. Our aim with this study is to report the risk of fractures among men with prostate cancer in a nationwide population-based study.Patients and methods: We identified 76,600 Swedish men diagnosed with prostate cancer 1997-2006 in the Prostate Cancer Data Base (PCBaSe) Sweden and compared the occurrence of fractures requiring hospitalisation with the Swedish male population.Results: Only men treated with gonadotropin releasing-hormone (GnRH) agonists or orchiectomy had increased incidence and increased relative risk of fractures requiring hospitalisation. Men treated with GnRH agonists had 9.8 and 6.3/1000 person-years higher incidence of any fracture and hip fracture requiring hospitalisation than the general population. The corresponding increases in incidence for men treated with orchiectomy were 16 and 12/1000 person-years, respectively. Men treated with orchiectomy, GnRH agonists, and antiandrogen monotherapy, had SIR for hip fracture of 2.0 (95% Confidence Interval 1.8-2.2), 1.6 (95% CI 1.5-1.8) and 0.9 (95% CI 0.7-1.1), respectively. Men treated with a curative intent (radical prostatectomy or radiotherapy) or managed with surveillance had no increased risk of fractures. Older men had the highest incidence of fractures while younger men had the highest relative risk.Conclusion: Prostate cancer patients treated with GnRH agonists or orchiectomy have significantly increased risk of fractures requiring hospitalisation while patients treated with antiandrogen monotherapy had no increase in such fractures. In absolute terms the excess risk in men treated with GnRH agonists corresponded to almost 10 extra fractures leading to hospitalisation per 1000 patient-years. Effects on bone density should be considered for men on long-term endocrine treatment. Unwarranted use of orchiectomy and GnRH agonists should be avoided. (C) 2012 Elsevier Ltd. All rights reserved.

Objective. To assess whether diagnostic random bladder biopsies and the detection of concomitant carcinoma in situ (CIS) have an impact on the frequency of intravesical bacille Calmette-Guerin (BCG) instillations or radical cystectomy; and whether this affects the cancer-specific survival in patients with pTaG3 or pT1G1-G3 transitional cell carcinoma of the urinary bladder. Material and methods. A population-based cohort of 538 patients with newly diagnosed bladder cancer was prospectively registered in the Stockholm County during 1995 and 1996 and followed for more than 5 years. Results. Random biopsies were recommended in all patients but the decision to take biopsies was made by the treating urologist and hence performed in 326 out of 538 patients (61%), which revealed concomitant CIS in 47 patients(14%). Sixty out of 103 (58%) patients with pTaG3 or pT1G1-G3 tumours, in whom random biopsies were performed, received intravesical BCG compared with five out of 22 patients (23%) where random biopsies were not taken (p = 0.004). Moreover, 23 out of 103 patients (22%) with pTaG3 or pT1G1-G3 tumours in whom random biopsies were performed underwent radical cystectomy compared with none out of 22 patients (0%) without random biopsies (p = 0.013). The Cox proportional hazard ratio for death due to bladder cancer in patients with pTaG3 or pT1G1-G3 tumours among patients not having versus having undergone random biopsies was 2.5 (95% confidence interval 1.1-5.6). Conclusion. Patients diagnosed in Stockholm in 1995 or 1996 with pTaG3 or pT1G1-G3 bladder tumours having undergone random bladder biopsies more frequently underwent BCG treatment and radical cystectomy and had higher cancer-specific survival than patients who did not undergo random biopsies.

Objective. To improve the functional outcome after cystectomy for bladder cancer, cystectomy was performed with a prostatic capsule- and seminal-sparing approach. This report describes the clinical outcome of the first 25 patients. Material and methods. A total of 25 male patients underwent cystectomy with preservation of the seminal vesicles, posterior prostate and neurovascular bundles. Orthotopic neobladders were used to divert the urine. At the time of last follow-up, patients were interviewed in a standard fashion to evaluate urinary, bowel and sexually related symptoms. Results. During the follow-up period (mean 72 months, range 33–129) five patients developed metastases and died of bladder cancer. Four men were diagnosed with concomitant prostate cancer. Complete day-time continence was reported in 17/20 (85%) patients. Complete nocturnal continence was seen in 10/20 (50%) men. A total of 20/21 (95%) were sexually active following prostate-sparing cystectomy. Conclusion. Prostatic capsule- and seminal-sparing cystectomy appears to combine acceptable oncological outcome with satisfactory function of the lower urinary tract; however, standard radical cystectomy still represents the gold standard.