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Homepage – Forum Forums Off Topic How is bladder cancer case data collected?

Viewing 15 posts - 1 through 15 (of 39 total)
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  • #46222
    raincity
    Participant

    Hi, everyone,

    Just curious how bladder cancer case number is collected. Does each hospital report new diagnosed patient to the province health authority, or the cancer treatment centers report their numbers?

    I had RC in 2021, stage 3, high grade bladder cancer, but wasn’t sent to the cancer agency for any kind of treatment, no oncologist arranged, despite no other health issues that made me unsuitable for treatmens. Does I counted as a bladder cancer patient in my province’s case count? Is it common that no prognosis and follow up plans given after RC? It’s very interested to find out what organs were removed during surgery by reading my pathology report myself, but I honestly didn’t enjoy it.

    #46223
    Joe
    Participant

    An excellent question!!

    I live in BC, so I can access statistical data from BC Cancer Agency website,  That is where I usually get the stats on bladder cancers.  But I did not think about how they gathered the original data.

    Alberta seems to have  CANCER REGISTRY REGULATION under REGIONAL HEALTH AUTHORITIES ACT.    For some reasons,  my attempt to post a link to any website always fails.    So,  I post here the relevant section from the site here.

    Duty to report
    6(1) A physician who knows or has reason to believe that a patient
    under the physician’s care or supervision has a reportable cancer
    shall, as soon as practicable, provide the regional health authority
    with the information set out in section 7.
    (2) A person who is responsible for a laboratory in which an
    examination of a specimen from a human body is conducted that
    reveals a reportable cancer shall, as soon as practicable, provide the
    regional health authority with the information set out in section 8.
    (3) After receiving information under subsection (1) or (2), the
    regional health authority may request the physician or person
    responsible for the laboratory to provide any additional information
    that the regional health authority considers necessary respecting the
    reportable cancer, the person who has cancer or the examination.

     

     

    #46224
    Joe
    Participant

    Below the information referenced in Duty of Report

    Reportable information – Physicians

    Section 7

    a) Patient’s information

    patient name, gender, date of birth, place of birth,  Alberta personal health number, patients address, vital status, diagnosis, date of diagnosis, name and address of physician, treatment (type and date), place, date and cause of death

    b) Tumour data

    anatomical localization of the tumour, morphology of the tumour, histologic grade of the tumour, stage of the disease at diagnosis, site of metastasis, laterality of the tumour, other critical prognostic variables, all clinical and epidemiological information pertinent to the diagnosis and treatment

    Reportable information – Laboratories

    Section 8

    a) laboratory data

    name of the lab, address of the lab

    b) patient data

    name, address, Alberta personal health number, date of test result (final report)

    c) site specific tumour data

    anatomical localization of the tumour, morphology of the tumour, histologic grade, staging, site of metastasis, laterality, other critical prognostic variables, other information that lab considers appropriate

     

     

     

    #46225
    raincity
    Participant

    Hi Joe,

    Alberta also has its own health guidelines for patients to check if their care is by the guidelines. Google Alberta health MIBC for the PDF file, NMIBC has a PDF too.

    My understanding on the DUTY TO REPORT is that, the urologst or pathologist should report to the registry. A patient can have repeat biopsy pathology, so I am guessing the urologist should call in any new case. What if the urologist didn’t report? Some patients have their local urologst and another surgeon urologst, who calls the case in? Especially if no BCG, chemo, radiation or immunity therapy given. Cancer Agency would report it’s cases, but how about patients like me? PT3 but not referred to the Cancer Agency?

     

    #46226
    Joe
    Participant

    Hi raincity,

    I have never seen the actual reporting so I only can do educated guessing based upon the fact that urologist and pathology lab have duty to report.

    I am pretty sure that your case had been reported by your urologist or the lab which analyzed tissue same from TURBT or by both.      Urologist knows the location of tumour(s) which pathologist would not know.  Urologist would not know histologic grade of the tumour, stage of the disease at diagnosis until pathologist analyzes tissue sample and report it.   I assume that you were diagnosed as muscle invasive bladder cancer which progressed beyond the muscle tissue and reached to the fat layer of the bladder (pT3).  So, the pathology lab must have reported it to regional health authority.    In Alberta, it sounds like the regional health authority is responsible for collecting and maintaining the data.   I am not sure who is responsible for collecting the data and maintaining it in other provinces. I have to check on BC in detail.

    All provincial data related to cancer will be shared at Federal Level but I don’t know which information are shared.

     

    #46230
    Joe
    Participant

    Hi raincity,

    Yukon Territory seems to be gathering notifications of cancer from doctors and diagnostic labs, but the data are managed by BC Cancer Agency.  Below info is from Yukon website.  So I expect each province follows similar procedure to collect the data related to bladder cancer incidents.

    Yukon Territory

    The Yukon Cancer Registry receives notifications of cancer from many sources
    including diagnostic laboratories, health care providers, and vital statistics. The Yukon
    Cancer Registry contains personal and demographic information, information about
    the specific cancer diagnosis, as well as mortality information received from the Yukon
    Vital Statistics Registry.

    The Yukon Cancer Registry is overseen by the Department of Health and Social
    Services, which contracts BC Cancer (part of the BC Provincial Health Services
    Authority) to build and maintain a separate territorial registry within its infrastructure

    #46232
    raincity
    Participant

    Hi Joe,

    Thank you so much, that’s interesting. A few days ago I was looking at the Canadian Cancer Statistics 2022 and a thought into my mind.

    1) Bladder Cancer Death is by MIBC.

    2) All MIBC= MIBC at diagnosis (about 25% of new cases)+ NMIBC progress to MIBC  (about 15% of NMIBC, over period of time, not included in new cases).

    3) If I divided a province’s new bladder case# by 4 (25%) for diagnosis at  MIBC, compare this# to the death#, the difference would be MIBC escaped from death, give or take.

    I can’t find the statistics right now, but I remember one of the four provinces I was looking at  had it’s death# more than newly discovered MIBC#, which, in my guess, would be this province didn’t do well on maintain NMIBC.  This province’s NMIBC probably progressed to MIBC in greater numbers. Because other three provinces’ new MIBC# were larger than death#.

    What do you think?
    Raincity

    #46248
    Joe
    Participant

    Hi raincity,

    I think your thought process is correct except maybe some details.  I am not sure though what kind of conclusion we can reach by finding out # of death per # of incidents when we just look at a particular year.  Intuitively, I think whichever province we live in Canada, the percentage should be similar.   Also in statistics, we often say garbage in and garbage out.  A case in point, Ontario did not report non muscle invasive bladder cancer patients to Cancer Registry till 2016.   Though, each province are supposed to be using similar methods to collect cancer related data, I am not sure if they are capturing the data properly.  A case in point, Stat Canada site allows number of incidences (# of incidences per 100,000 citizens) of bladder cancer by provinces in 2020, 2014, 2018, 2000.    For some reasons, # of incidence per 100,000 in Alberta has been always low compared to ON, and BC.   Also # of incidents per 100,000 are higher in east coast provinces.  I could not find # of deaths stat.  No explanations are given.

    Yr 2020  NL:  39.3   PEI:  34. 1   NS:   n/a   NB:  35.1  QC:  n/a    ONT:  24.1   MB : 23.9    SK: 22.9   AB:  19.0   BC:  26.5  Yukon 23.7   NWT  11      NVT:  0    Canada n/a

    Yr 2014   NL:  31.2   PEI:  31. 2   NS:   n/a   NB:  32.0  QC:  31.7   ONT:  26.4   MB : 17.2    SK: 26.5   AB:  20.2  BC:  26.3   Yukon 26.9   NWT  11.4    NVT:  0    Canada 26.9

    Yr 2018   NL:  37.1   PEI:  29.3   NS:   34.4  NB:  31.8  QC:  n/a   ONT:  27.2    MB  :24.8    SK: 24.5   AB:  22.0  BC:  28.8   Yukon 24.7   NWT  11.1    NVT:  0    Canada 27.0  excluding QC

    Yr 2000  NL:  18.9   PEI:  22.0   NS:   25.7  NB:  20.0 QC:  24.3  ONT:  13.9    MB  :22.2    SK: 21. 3  AB:  15.4   BC:  21.0   Yukon 216.4  NWT  0.0    NVT:  0    Canada 18.6

     

    I wondered if #of urologist  make difference in # of incidents

    Number of urologists in Canada per population 100,000.

    Yr 2019  NL:  2.12    PEI:  1.4    NS:  2.81    NB:  2.94   QC:  2.47     ONT:  2.11   MB : 1.88    SK: 1.46   AB:  1.55   BC:  2.00  Yukon 0  NWT  0     NVT:  0        Canada  2.11  730

    Interesting  much fewer number of urologists / 100,000 in AB (1.55) vs ON (2.11),  QC (2.94),  BC (2.00), and few number of incidents in 2020, AB(19.0) vs ON (24.1), BC (26.5) .  Perhaps. it is just coincidence, but It is strange that AT has lowest # of incidence  and significantly lower / 100,000 all these years compared to ON, and BC.

    In terms of Death / Incidents,   I could get the data in 2018 for BC and Alberta, and 2022 for Ontario

    BC  (2018)   Incidences M 1155, F 365  Death  M  235 , F 85       Rate  M 20%,  F 23%

    AB   (2021)   Incidences M 743 , F227  Death  M  108 , F 34        Rate  M 15%,  F 15%

    ON  (2022)   Incidences M 3411, F 1034  Death  M  612, F 242    Rate  M 18%,  F 23%

    I have noticed that a 5 year survival rate is  more often used than  # of death / # of incidents to predict prognosis 

    Below is related information giving at American Cancer Society site.

    Localized: There is no sign that the cancer has spread outside of the bladder.    I.e.  NMIBC and MIBC without metastasis to lymph nodes or other organs.

    Regional: The cancer has spread from the bladder to nearby structures or lymph nodes.
    Distant: The cancer has spread to distant parts of the body such as the lungs, liver or bones.

    Localized  – NMIBC   95%               MIBC  70%

    Regional  39%

    Distant   8%

    ALL combined  77%

    Also the site warns that people now being diagnosed with bladder cancer may have a better outlook than these numbers show. Treatments improve over time, and these numbers are based on people who were diagnosed and treated at least five years earlier. These numbers apply only to the stage of the cancer when it is first diagnosed. They do not apply later on if the cancer grows, spreads, or comes back after treatment.
    These numbers don’t take everything into account. Survival rates are grouped based on how far the cancer has spread, but your age, overall health, how well the cancer responds to treatment, and other factors will also affect your outlook.

    In terms of MIBC and metastasis, in recent years we have seen several new treatment, high lighted by discovery of immunotherapy and antibody drug conjugates, which have shown highly effective and durable results which have not been fully reflected to statistical data.  Also, every cancer is different in genomic level, which can be  analyzed by DNA sequencing machine, which has become affordable.  So, I think we should be looking at statistics as reference with grain of salt.

     

    #46251
    raincity
    Participant

    A single year’s data cannot tell the whole story, but still gives a hint of each provinces’performance on bladder cancer.

    On the Canadian Cancer Society’s website, there’s a province-specific statistics, here are new cases and new death from the website.  MIBC at diagnosis would be 25% of new cases. New death/ new MIBC >100% would be NMIBC at diagnosis later progressed to death by MIBC.  It would be more reliable if calculated on multiple years’s data.

    NEW CASE.   (25% of new case).    DEATH.    ( new death/ new MIBC)

    AB.      1120.                  (280)                               180              (64%)

    BC.      1650.                  (412).                              390             (95%)

    MA.      340.                   (85)                                110.              (129%)

    NB.      290.                   (73)                                  65.              ( 89%)

    NL.       205.                  (51).                                  40.              (78%)

    NS.       370.                    (93).                                80.              ( 86%)

    ON      4850.                (1213).                               840.              (69%)

    PEI.       55.                      (14).                                 15.                ( 107%)

    QC.      4100.                 (1025).                              750               (73%)

    SK.         300.                  ( 75).                                 80.                (107%)

    #46252
    raincity
    Participant

    The Canadian Cancer Society’s data is from Government of Canada’ website, it’s 2022.

    As a patient, I am simply looking for a province with a better survival chance.

     

    #46254
    Nightingale
    Keymaster

    Hi Raincity,
    I reviewed your post with another PSV with RC experience. After reading it several times, we both feel that the issue is not so much the reporting of cancer cases but rather the limited post op follow up you received which is quite concerning e.g. that your urosurgeon did not discuss with you the organs that were removed and that you had to discover this information by reading your own pathology report.  Based on what you describe, we recommend you contact your doctors (GP, Urologist, Oncologist) to review your specific situation. Please message me privately by clicking on the ‘Send a Message’ directly below my Alias name and let me know which hospital you were treated in.

    Thank you,

    #46263
    Joe
    Participant

    Hi Raincity,

    Thanks for the reference to CCS and preparing well arranged data.  You must have very good eyes finding it as I still could not find.  Also, you must be very skilled in EXCEL.    Numbers seem to be right, except some variability of some of original data.

    I tried to get incidence rate by dividing # of incidents by population of each province, i.e. the population of Alberta is 4.5 million and Quebec is 8.7 million, which results in 24.55 and 46.96 per 100,000 respectively.  It is impossible to have that kind of differences between Alberta and Quebec.   The problem is that in Quebec number of newly diagnoses is 4,100 for 8.7 million people whereas in Ontario number of newly diagnosed in 4,850 which is similar to the number in Quebec but the population is 15.3 million, which is almost twice of Quebec.  As you mentioned, if we added up several years, those ratios may become more usable as a tool for a certain decision making.

    Also the rule of thumb I use is 5% metastasis, 20% MIBC, 25% CIS+HG NMIBC,  50% LG NMIBC at initial diagnosis.

    In term of being able choose the hospital with focus on bladder cancer, what I have noticed among patients community in the US is that they recommend to go to NCI (National Cancer Institute) designated hospital to get better cared treatment.  There are about 70 NCI hospitals in the US.   In the US, patients can choose hospital as long as those hospitals are covered by the patient’s insurance.   In Canada, we do not have that much freedom in choosing the hospital we want to be looked after by. In Canada, while ago, I read that there were such designation as Centres of Excellence or Expertise in bladder cancers. But, it is not publicly known or visible to patients as NCI designated hospitals in the US.  But, I think if we are being looked after at a hospital which is affiliated with a university urology department with an access to genitourinary oncologist, we should be able to get similar level of treatment.    A well resourced hospital should have so called multi-disciplinary tumor board where a  urologist,  an oncologist, a pathologist, a radiologist get together to discuss patient case,  and agree on treatment.  Below is a demo version of e-tumor board by Memorial Sloan Kettering in NY.

    https://www.mskcc.org/videos/msk-e-tumor-board-case-1-muscle-invasive-bladder-cancer-mibc-01

     

     

    #46264
    raincity
    Participant

    Hi Joe, I agree, I was surprised at my findings too. This data is on Canadian Cancer Society’s website, go to the menu bar – cancer information – cancer types – at the very bottom of bladder, there’s a statistics, go to the very bottom you will see ” province-specific statistics. Please do check in case I got the numbers wrong.

    I thought about the population, age, etc, but decided to keep it simple. Some provinces do have a higher bladder cancer rate, I think in BC,  bladder cancer is #5 in men’s cancer. Age of general population would play a role too. In fact, I think  access to a good quality general health care would make a huge difference on screen and maintenance.

    AB and ON both did well on my chart,  I also found those two provinces have it’s own guidelines on bladder cancer. Google Alberta muscle invasive bladder cancer for AB’s easy understanding, step by step guideline, with this kind of guidelines, it would be a time saver for the professionals and a tool for patients to make sure their care is following the line. Perhaps AB and ON can kindly share their guidelines for other provinces to follow? What if all urology departments has information on guidelines for patients?

    What happened on QE? The number doesn’t make sense at all.  Did their bladder cancer patients die without being diagnosed? Is there a number for original unknown cancer patient?

    Because I never had an explanation on my situation, I have been trying to learn. Bladder Cancer Canada’s website helps a lot, I love those webinars, do you know there’s a link in this website for Canadian guidelines? There’s also an easy understanding Canadian guideline white paper somewhere on the internet.

    #46266
    raincity
    Participant

    Hi Joe,

    I think there must be an error on the data, I will dig around on the weekend.

    Thank you for pointing it out.

    Raincity

    #46267
    Joe
    Participant

    Hi raincity,

    Thanks for sharing easy steps to get to the data by provinces.  I was trying to get the same information by searching the data from each provincial web site.    I think QC number is incorrect.  It could be reflection of some adjustment they made as the 2021 report says that Quebec uses different projection model, so some data were excluded.   I just sent an email to Canadian Cancer Society requesting their explanation.   Hopefully their answer will clarify it.

    Sometimes, I refer to the guidelines  of Canadian Urological  Association (CUA) guidelines,  American Urological Association (AUA ) and  European Association of Urology (EAU).  I just do Google search it.  Usually, the guideline for non muscle invasive bladder cancers and muscle invasive bladder cancers are  separate documents.  So,  I will search  by CUA guidelines for non muscle invasive bladder cancers for, or muscle invasive bladder cancers.

     

     

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