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Viewing 15 posts - 1 through 15 (of 16 total)
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  • #44476
    TLR
    Participant

    I’m a Palliative Care Nurse so obviously I’ve already given myself a death sentence.

    The wait is hard and I guess I wonder what are the typical wait times are across Canada. I had blood in my urine with no pain or other symptoms April 24. Nothing noted  again for three days then it occurred again with one void. I called my MD and he can’t see me till late June but the NP can see me. We ran all kinds of tests on Tuesday that show no infection and kidney function is fine. Yesterday I had blood in every void- one void looked like pure blood. Today every void is clear. it’s come to the point I don’t even want to look into the toilet after a void.

    As the NP the MD and myself suspect bladder cancer at this point since every other plausible cause is ruled out a consult to urology was sent and I will see the urologist June 1. I feel like I should see him now not in two weeks. Is that a normal wait time?

    I can only find mention of blue light technology with cystoscopy in Canada in the provinces of BC and Ontario. I’m in Manitoba. Is this not a gold standard of diagnosis across the country since the blue light illuminates the smallest of malignant spots in the bladder wall?

    I’ve started to have pain in my abdomen and lower back today as well.

    I am a 55 year old female, heart function of a 35 year old, no issues with my colon and have had a total hysterectomy including cervix removal in 2015. Super healthy and active person.

    thank you

    #44481
    Nightingale
    Keymaster

    Hi TLR,

    Thank you for entrusting us in the Forum with your story.  Waiting 2 weeks to have a cystoscopy done is not uncommon.  In fact in some parts of Ontario it would be considered amazing!  Perhaps let your medical team know that if there is a cancellation to let you know.

    Blue Light Cystoscopy in Canada is used only during the Turbt, not for normal Cystoscopy.  This is primarily due to cost of the fluid that is injected into the bladder to help show up the cancer (if it’s there) better.  Also, keep in mind, that BLC is used primarily for Non Muscle Invasive BC.

    For availability of BLC, you’re right, I am not aware of any hospital in Manitoba that offers BLC.  There are several in Ontario starting with Sudbury, Princess Margaret, Toronto Hospital and Humber View.  Further East, Kingston also offers it.

    I hope this is helpful.  All the best in your quest to have your bladder examined.  Do keep us informed.

    My Best,

    #44484
    Antun
    Participant

    Does anyone know whether you can do a test – other than a cystoscopy test – to examine your bladder? Is there a blood test or a ctDNA test (circulating tumor DNA)that can show results?

    Cystoscopies are brutal and they hurt the urethra.

    Does anyone know whether a cystoscopy procedure – if done incorrectly – can cause Peyronie’s Disease?

    #44486
    marysue
    Participant

    Hi TLR:

    I’m sorry to learn that you may have bladder cancer.  As a 15 year veteran of dealing with BC, I can tell you the journey is not fun.  A cysto is still the usual best way to determine if you have bladder cancer or at the very least confirm the presence of tumours.  On a rare lucky chance some folks do get a benign diagnosis so there’s that.

    You are correct cystos are brutal and hard on the urethrea.  I now deal with a prolapsed urethra courtesy of years of cysto exams, catheterizations since childhood, menopause, multiple surgeries, 4 pregnancies etc.  My body has had quite the journey.  Still, I grin and bear it for a cysto every few months because I want to see for myself what is happening inside my body.

    Urine cytology can detect the presence of cancer cells but I don’t think it can actually confirm a bladder cancer diagnosis.  Ultrasound and x-rays can detect tumours if they are large enough to show up.  That is what happened to me the first time.  When I first had blood in my urine and it was a lot, I went to my family doctor who sent me for x-rays and ultrasound.  The results showed not one but several tumours in my bladder.  I was hustled off to a uro who ordered a cysto exam which I had about 2 weeks later and it confirmed the presence of the tumours that showed up on the imaging.  Even though my uro had the imaging results from my family doctor he insisted on the cysto exam because he told me that imaging is not always accurate and that the cysto exam would show any issues in full living colour and in my case it certainly did.

    I have no idea if a cysto done incorrectly can cause Peyronie’s disease as I’m not familiar with that disease.  The most common side effect from a cysto is a UTI and for some a sore urethra for a couple of days.  I’ve only had a UTI once from a cysto and it was during a time of intense work stress so whether that had any bearing on it I have no idea.  I usually counter risks of any post cysto issues by taking a strong cranberry supplement for a couple of weeks ahead of my cysto date and drinking a whole load of cranberry juice along with a ton of water to keep my bladder really well flushed.  It may sound counter intuitive but I have found the more I drink post cysto, the more I pee and the faster the pain in the urethra goes away.

    The other reason I have learned for not doing blue light during regular cystos is that in addition to the cost of the dye, is the extra time it takes to get the patient injected with the dye and then I do believe you have to wait a bit for the dye to take effect before the exam can be performed.  Someone can correct me here if I got this wrong.  I’ve never had a blue light for a regular cysto.  I never asked whether it was used during my 3 TURBT surgeries.  I have had 2 uros and both are excellent surgeons so I trust their judgement when they are in there.

    The main thing for you right now, is to get the cysto done to confirm visually any tumours present and go from there.  The waiting game at the beginning of this journey is probably the hardest.  Our minds do tend to go to the dark side.  However, please try to take heart from this – 75-80% of people diagnosed do have non-muscle invasive bladder cancer which is very treatable albeit annoying with its recurrences.  It is not an easy journey as no cancer journey ever is but the long term survival rates for early stage bladder cancer is over 90%.  Learning all about the disease and how to fit what you need to do in terms of surgery, treatments and tests takes time and time to get your mind around the shock of it all.

    Trying to stay positive is the biggest challenge of a cancer journey and is easier said than done.  Yes, you will have good days and not so good days and that is okay.  Noone will be perky 100% of the time.  My suggestion for right now is do your level best to stay busy to pass the time until you get the cysto done.  Also do some things just for you, whatever that might look like.  It is one day at a time right now.  Once you get the cysto done, your uro will advise you of any next steps.

    And of course, you have us here at Bladder Cancer Canada and we can help you with any questions you may have along the way.  Best wishes.  (((HUGS)))

    #44489
    marysue
    Participant

    Hi TLR –

    I second what Nightingale has said.  I waited 2 weeks for my first cysto back in 2008.  I was lucky the timeline was even that short since I got in on a cancellation.  Blood in the urine can come and go with bladder cancer.  Even when you can’t see it you most likely have microscopic hemeturia. If it is bladder cancer the blood is coming from the tumour(s) bleeding out.

    I’m of the understanding that the desired timeline from initial tests to TURBT surgery is maximum a month but sometimes that timeline can’t be done due to doctor surgery schedules, OR availability etc.  I waited 8 weeks for my first TURBT, 9.5 weeks for the second and only 4 weeks for the third one which was with my second uro.

    I had back pain with my first two goes with bladder cancer.  It was a deep dull ache at the base of my spine just above the tail bone. The pain went away after my TURBT surgery.  I asked the nurse about it and she told me that it was most likely “referred pain”.  The pain most likely started in my bladder but because of the nerve pathways I have, it manifested in my back.  With my third go with bladder cancer this past fall I didn’t have any back pain which made the diagnosis a real surprise.  I didn’t even have visible blood in my urine.  That being said, this time around it was a different type of bladder cancer.  It was carcinoma in situ which is a flat lesion versus the more common papilliary tumours that look like pieces of pink coral or cauliflower.  Some people do get abdominal pain with bladder cancer.  I don’t recall having it in my case prior to surgery or treatments.

    Best of luck with the upcoming cysto.  ((((HUGS))))

    #44492
    TLR
    Participant

    Hello

     

    Thanks for the replies. I do not have a cysto in two weeks- just an appointment with a urologist. Do people ever Hoo down the the US to have the cystoscopy done? I’m less then 2 hours from Fargo ND.

    #44499
    marysue
    Participant

    Hi TLR:

    I believe that some people may do that but I don’t know of anyone personally  that did it.  I considered going to the USA the first time after my initial cysto because noone had any idea at the time when I would have the TURBT surgery.  I did ask my GP about it and he told me that I’d be on my own for the expenses and quite possibly any follow up care.  Since the costs were too prohibitive for me I decided to wait it out.

    I then went back to my uro to get a more definitive answer about when I would possibly be going in for surgery and he did tell me that I was on his urgent list and would be done as soon as possible, hopefully early fall.  3 weeks later in early August I got a call for the beginning of September. All told it was an 8 week wait for surgery.  Not great but at least I got in there. The trick I learned from this is to find out where you are on the urgency scale.  That is usually how hospitals prioritize you for the surgical wait list.  I didn’t ask but I have a feeling that is why I got in with only a 4 week wait this time in 2022.  My uro didn’t tell me but I did notice that the tumour this time around looked different from before.  He told me that it hadn’t been there very long but I had a sense of urgency from him when he recommended that I also have a chemo infusion in my bladder post op.  I deduce from this that he knew the type of cancer even though he didn’t tell me at the time.

    What I have found one of the most annoying aspects of the bladder cancer journey is that the whole process really varies from province to province and doctor to doctor.  Timelines vary.  The treatment process can vary.  This sometimes makes it tough for patients to make decisions.

    If you do choose to go to the USA I strongly recommend that you find out the process first and all the costs you may incur and also any followup requirements. Your provincial health care may not cover very much of it.  If you have private health insurance they may or may not depending on the insurer.

    If you do see that urologist on June 1st, push for the cysto to be done ASAP.  Don’t let anyone fob you off on that it might be a UTI or a menopause thing.  You’ve had tests already to rule out infection etc. so that should be enough info for warranting a cysto exam.  If there is a wait for a cysto and/or surgery maybe ask your uro if there is another hospital/clinic that you could be referred to that has less of a wait time.  ((((HUGS)))

    #44507
    Joe
    Participant

    HI TLR,

    I live in BC.

    I would have waited 3 months from the first time I saw blood in urine till I get the pathology report if I had just followed the processes.    When I had 3rd blood in urine, I went to ER of my local community hospital.  Thankfully, Dr. Vladimir Krajina – called a urologist and arranged CT  (CT Urogram) with dye 3 days later, then radiologist showed me the image of mass in my bladder.  I went straight to the urologist office and told the receptionist that they found a tumor in bladder by CT scan.  I had cystoscopy a week later, then TUBRT less than 2 weeks  later.  So, time from fist blood in urine to  the pathology result became 1.5 months instead of 3.

    Now when I think of the sequence of events and now with more knowledge about bladder cancers,  I believe the CT scan eliminated likelihood of metastasis including lymph node invasion and muscle invasive.  As long as it is non muscle invasive bladder cancers, especially if it is low grade it would have mattered if I waited a month more.  But if it is metastatic or muscle invasive, especially if it is metastatic, it calls for immediate treatment.

    They say at initial diagnosis, 50% are low grade NMIBC, 25% are high risk (HG/CIS) NMIBC, 20% are MIBC, and 5% are metastasis.    So, statistically speaking you have 75% possibility to have NMIBC.  In this case, waiting two weeks to see urologist won’t make much difference in your prognosis.   Note that low grade NMIBC are not life threatening such that though recurrence rate is high, recurrences are usually low grade again.

    I am more concerned of your having experienced pain in abdomen and low back.    Some site says abdominal pain when the pain comes and goes or does not go away, and pain lower back that does not feel the same as a pulled muscle or disk problems are possible other symptoms of bladder cancer.   The same site says pain in lower back on one side can be symptom of advanced bladder cancer.   So, I would definitely mention about abdominal pain and low back pain to receive CT Urogram.

     

     

    #44628
    TLR
    Participant

    Hello

     

    First, I need to express my sincere gratitude to each of you and to everyone who is finding their way through bladder cancer. I wish you all nothing but the best.

    secondly…. Had my cystoscopy today and also found out urine cytology is negative. There is nothing growing in my bladder and suspect is kidney stones – uro CT is booked.

    Thank you Bladder Cancer Canada for all the support you provide.
    💕

    #44641
    Nightingale
    Keymaster

    Hi TLR,

    That is wonderful new in a sense that you don’t have the dreaded BC.  I hope you’re able to have those stones taken care of and get back to living and enjoying life to it’s fullest.

    Have a wonderful summer!

    My best,

    #45240
    sandy s
    Participant

    Hello there,

    I started having dark urine a few months ago (April-May 2023) and went to see my family dr. She did a urinalysis which saw both white and red blood cells present. The red blood cells were making my urine darker. She then did a whole bunch of follow-up urine tests to rule out bacterial infection, nephritis and other conditions. She then went on vacation in July, but I got a note from her saying that she wanted me to do further urine tests (urine cytology) and the nurse at the clinic would call me to get going on that. So I submitted my urine cytology tests at the hospital last week. In the meantime, I have also undergone two pelvic ultrasounds. The first one had to be repeated because my bladder was not distended enough (funny, I drank a lot of water before the test!), but for the second one (done last week) the technician assured me that the bladder was full enough. The doctor at the hospital said the pelvic ultrasound showed no abnormality. So I have to see my GP this upcoming Thursday and I am absolutely terrified. Both my parents died of cancer (my dad: complications of lung cancer, my mother: metastasized melanoma), and I am figuring that I am next. I am 59, in good health and only have had thyroid and parathyroid issues and osteoporosis up until now. I also have some pelvic pain and foamy urine (which apparently may be caused by kidney problems, but they didn’t find any protein in my urine). I am trying to reassure myself that, even if it is cancer, it still might be curable. But I am so afraid.

    #45241
    marysue
    Participant

    Hi sandy s:

    We’ve all been where you are – scared out of our wits wondering what the diagnosis will be.  Hang in.  Easier said than done I know.  And I will admit it is even more scary when you have had loved ones close to you die of cancer.  Myself, I lost my father to prostate cancer and my mother-in-law to lung cancer so when my turn came with bladder cancer, I too was freaking out wondering how long it would be before I joined them.  What I didn’t know at the time is that the largest majority of people when diagnosed with bladder cancer have early stage disease which is very treatable.  The most annoying part about bladder cancer is that it does unfortunately have a high recurrence rate.  That being said, I do know of individuals who have only had it once and when the tumours were removed that was it for them.

    As mentioned bladder cancer is one of the more treatable cancers and has a better survival rate than many other kinds of cancer despite its high recurrence rate.  Even some with a more advanced bladder cancer have survived after surgery and treatment and gone on to live their lives.  The main step for you right now is to have it confirmed whether you actually have bladder cancer or is the problem something else.

    Urine cytology can pick up the presence of abnormal cells which may indicate cancer present in the bladder so hopefully the tests that you already did will have picked up anything unusual if something is going on. Anything abnormal require further investigation.

    If the urine cytology did not pick up anything definitive, I suggest asking your GP about a referral to a urologist so you might be able to get a cystoscopy done.  A cystoscopy is when the doctor puts a scope with a camera on the end up the urethra and is able to visually exam the inside of the bladder.  It would also be prudent to ask about a pelvic CT scan with contrast if that was not already done.  These exams are more invasive but can be more conclusive than x-rays or ultrasounds alone.

    When I first had blood in my urine I went to my GP who ordered regular x-rays and a pelvic ultrasound.  In my case the tumours were large enough to show up but when I had my consult with my urologist he still wanted to do a cystoscopy to view the inside of my bladder to confirm what the ultrasound and x-rays were showing.  He told me that regular x-rays and ultrasound are not always accurate, so that was why he wanted me to have the cystoscopy and that exam did confirm the presence of tumours and then he booked me for surgery to have the tumours removed.

    If you have pelvic pain, that does indicate a problem.  Did anyone look for kidney stones?  Best of luck on Thursday.  Please keep us posted and let us know if you have any questions.  No question is a dumb question.  (((HUGS)))

    #45242
    sandy s
    Participant

    Thank you so much, MarySue, for your quick answer and kind words. Yes, my doctor already checked for kidney stones. I know that neither urine cytology nor ultrasound are the ultimate diagnostic tools for bladder cancer, so yes, I will ask my GP to refer me to a urologist for a cystoscopy, even if the urine cytology turns out negative. From my understanding, the urine cytology is only very effective in picking up certain types of tumours while not as effective in detecting others. My doctor will probably want to send me anyway, as she is very thorough. Definitely, I will keep you posted! Thanks again.

    #45270
    Joe
    Participant

    Re cytology

    By now most cytology labs in Canada should have implemented The Paris System (TPS) for reporting urinary cytology.  TPS was brought to the International Cytopathology Congress, which was held in 2013 in Paris.  TPS version 1 was published in 2016, and the version 2 was published in 2022.   There is a fundamental parading shift from previous reporting system to TPS such that mainly TPS only focuses on detecting high grade(CIS included) tumor and not longer reports on low grade tumors.   The reason for TPS is to improve accuracy of cytology reporting and focusing on high grade.   Not only cytology but also other urine analysis have ben not accurate on detecting low grade. Also, though low grade has high frequency of recurrence, they are considered not life threatening because it is know that low grade usually do not break through basal cells layer and progress to lamina propria (connective tissue (T1)) or to muscle tissue, therefore not considered life threatening.  On this other hand, HG had already progressed T1, so probability of HG progressing to muscle tissue and become life threatening due to increased chance of metastasis if HG is not detected accurately in cytology.   Cancer rise from accumulation of  malfunction/mutation of certain genes.  With the cost of DNA analysis has come down drastically compared to 10 years ago, there have been several studies analyzing genes associated with urothelial carcinoma, and now we know certain genes are associated with low grade, high grade and even with CIS.   For example. low grade is associated with mutation of FGFR genes.  Some report says 60% of low grade has mutation in FGFR genes.  FGFR ( fibroblast gross factor receptor) receives a certain signal from our body and initiates a cell cycle process to produce new cells. If FGFR genes are mutated, FGFR initiate a cell cycle process without receiving “Go” signal from our body.  On the other hand,  many of HG tumors are found to have TP53 gene mutated.  P53 protein is produced based upon the information of TP53 gene.   P53 protein is called tumor regulator or tumor suppressor.  P53 is considered to be involved in Apoptosis – cell self death or program death.  If DNA copy is not done correctly during cell cycle, our body has mechanism to repair the DNA.  But sometimes, the DNA can be repaired.  In such case, our body has mechanism to destroy the cell  with bad DNA.  P53 is considered as a supervisor in arranging metabolic process to destroy such cell.  If P53 does not function as designed because  TP53 gene is mutated,  the bad cell may survive and cancer may rise.   So, cytopathologist community considers that just focusing finding high grade in cytology is justified.   Below 5 classifications are in 2022 TPS.    Low grade urothelial neoplasm (LGUN) was moved as text under NHGUC.   Incidentally, with TPS, the number of Atypical has reduced substantially.

    Negative for high grade urothelial carcinoma (NHGUC)

    Atypical  Urothelial Cells (AUC)

    Suspicious for high grade urothelial carcinoma (SHGUC)

    High grade urothelial carcinoma (HGUC)

    Other malignancies, e.g. . variants

    My urologist prescribed cytology a few months ago.   The prescription said “bladder cancer”.  I went to a local community lab.  Apparently it was sent to BC Cancer Agency.  I assume that cytology for bladder cancer requires experience and BC Cancer must have cytopathologist experienced well with bladder cancer.  The pathology report just said Negative for high grade urothelial carcinoma, with description The Paris Systems.  It does not mean that I  have low grade tumor. But, because cystoscopy prior to cytology did not find anything, It is very likely I do not have low grade or high grade tumor.  I did not get any call from urologist or my GP.

    So, if TPS is used in the cytology lab which tested your urine, TPS can tell fairly accurately now if you have high grade, or CIS if TPS says HGUC or SHGUC.   If the report says Negative for high grade urothelial carcinoma (NHGUC), you can breathe. But NHGUC does exclude low grade tumor existing in bladder.   So, it will require cystoscopy to find out if no tumor or low grade tumor in bladder.

    #45606
    Antun
    Participant

    Hi Joe,I just had my first Cytology test and it came back as negative for high-grade urothelial carcinoma.

    I guess this test is no substitute for the Cystoscopy test. I have a urologist who has done several cystoscopies on me and each time I wince in pain.

    I have a feeling that the hospital has very old and bad instrumentation and maybe they are not doing it correctly. Just after the last one I seem to have acquired the Peyronie’s Disease – but I can’t be sure it it’s caused by the improper instrument or the Urologist.

     

    If you live in BC do you have a suggestion for the best urologist in Lower Mainland?

    What do you think about this?

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