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Homepage – Forum Forums Muscle Invasive Bladder Cancer Urine cytology and ileal conduit

Viewing 14 posts - 1 through 14 (of 14 total)
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  • #7783
    Susan
    Participant

    Hi

    A question that arose from a BCAN discussion that I was following. A 3 year follow up for a person with an ileal conduit on that forum, involved:
    a CT Scan
    blood work
    chest Xray
    and urine cytology

    19 months ago, I had ileal conduit surgery. I’ve had follow ups at 6 months and 1 year:
    CT Scan, blood work and chest Xray at 6 months
    and
    Ultrasound, blood work at one year

    But I’ve never had a urine cytology. I was told the purpose is early detection of cancer further up in the urinary tract. Is it usual practice that a urologist will ask for this in follow up tests? Does it have to be done using a catheter? On some websites I read that a nurse would insert a catheter into the stoma, and on one website, I read that the sample could be taken from the pouch. I won’t be seeing my urologist for another 6 months so I can’t really ask him about this. And my family doctor doesn’t have the answer.
    I’m curious about others who have had cystectomies. Has your urologist requested a urine cytology along with the other tests?
    Thanks for any feedback on this.
    Susan

    #15445
    KIOWA
    Participant

    Hi Susan: I would think that since a urine cytology is one way of following up on bladder cancer that since you no longer have a bladder it would not be used. But I’m not really sure. The follow up for cancer after a cystectomy are a bit different in dynamics and scope.

    Kiowa

    #15450
    Susan
    Participant

    Thank you for your replies, Rusty and Kiowa. I read on another discussion group that urine cytology can be used to detect cancer in the upper tract – I took that to mean the ureters and/or kidneys. And I guess I was wondering if it would detect cancer that might not show up on ultrasound or CT scan. And I was also wondering if other “cystectomites” (haha, that’s not a word, I’m sure) were having urine cytology done regularly along with the other tests. Doesn’t sound like that’s the case.

    #15455
    Greg
    Participant

    Hi Susan:
    I did not reply previously as I have a neobladder and not an IC. But as far as I know the CT, blood and x-ray are all I have had done. I’m due to go again in a few weeks for another annual and I’ll report back if cytology is done. Since I still do “perform” in an almost “normal” fashion, to ensure I am emptying my neo they do an ultrasound of the neo as well after I have emptied my bladder. So far so good at 29 months post surgery.

    #15469
    tinkerbelle
    Participant

    Susan,

    My husband had an r/c 6 years ago, he has the ileaut conduit, after his cat scans of abdomen pelvis and xray of the chest the blood work, they draw fluid by cathing from the surgery site, his surgeon explained that he has seen cancer return in the ureters, we are having a conference at the Cleveland Clinic on May 20th, I will get some detailed info on this, my husbands surgeon is the main speaker..they have performed this test at every follow up for him….get back to you soon…….

    #15472
    Susan
    Participant

    Tinkerbelle and Greg – thanks for your replies. This is interesting – could it possibly be a difference in protocol between the US and Canada? Thanks for pursuing the topic on my behalf, Tinkerbelle. I will be interested to hear what the Cleveland Clinic has to say about urine cytology and whether it is advised for everyone.
    I have no real reason to think my cancer could or will return in my ureters, I guess. But the idea I could be reassured periodically with a reliable test – well, that’s very appealing.
    Susan

    #15479
    tinkerbelle
    Participant

    Yes, we can compare notes, looking forward to the answer myself….

    back at ya soon

    ginger

    #15541
    tinkerbelle
    Participant

    Hi Susan,

    Well we had our conference at the Cleveland Clinic, I asked about cytology and my answer was this….

    Especially with men because of the urethra, and the urethers, everyone should have cytology checked at every appt. post r/c……this is to be sure no micro scopic cells are hiding..they do a uretheral wash…….meaning they flush the area inside the penis and cavity and test it…….men have complex issue becasue of the penis being involved as well….maybe ask on your next appt. just to be sure……..let me know the feedback you get from your surgeon…….

    #15601
    Susan
    Participant

    Hi Ginger

    I somehow missed your post from May 23rd until today. Anyway, I will be following this cytology question with my surgeon as you suggested. But I won’t be seeing him until October.
    I no longer have a urethra (I don’t think, haha) but of course the ureters are connected to my ileal conduit.
    I do have a lot of trust in my young surgeon/urologist, so I’m assuming there is some good reason that urine cytology hasn’t happened with me. But I still want to hear exactly why not.
    Thanks for your response, and I’ll post any further information I get on this topic – but it may be months from now.
    I am seeing my family doctor in a couple of weeks, but don’t expect him to know much about this. Maybe he can do the asking for me, though.

    #15607
    KIOWA
    Participant

    I forgot to add, but someone may already have done so, that a urine sample should be taken from the pouch because there could be some contamination, especially re: bladder infections, it is typically done by catheter insertion.

    Kiowa

    #15612
    Mollygolly
    Participant

    Hi Susan,

    I was thinking about the same thing. I have my check up in August and it will be a year since my RC. I have read that urine cytology should be done as follow because it can detect cancer cells in the upper tract . I know of some people who had urine cytology that indicated cancer in the upper tract – ureter and kidney and this was years after RC. I wonder why they have not ordered that for us? When I had my first cysto – the gyne ordered urine cytology which was positive for cancer. I also have not had a chest x-ray and I know how important that is. Stage 1, high grade bladder cancer is serious. My urologist told me that he had patients who had mets from this stage. I feel it is extremely important to have thorough follow up. If they happen to find cancer cells by urine cytology it could be early enough to treat. I am going to ask him about this when I see him. There is a website, I might be able to find the address, that states what the protocol is for follow up after RC and it says urine cytology. This disease is very hard to treat once it gets out! I have an ileal conduit as well and my understanding is that the urine sample is obtained by cath from the stoma nurse.

    Tracey

    #15618
    Susan
    Participant

    Hi Tracey

    I read back over some of your previous posts, and wow, I’m impressed with how well you’re coping before even your first anniversary! I also did not have any post surgery complications, very few problems adjusting as far as the pouch goes, and have felt very healthy after recovering from the surgery – my surgery was October 2011, so I am past the 1 1/2 year mark.
    I would really appreciate hearing what your urologist has to say about urine cytology when you see him in August. Oooooh – a catheter in your stoma – if that’s how it’s done, I would REALLY appreciate hearing what that is like for you.
    I had a CT scan at the 6 month point, and then only an ultrasound at one year; my urologist explaining that he wanted to avoid the radiation from CT, and he was very confident nothing bad was going to be found. But I ended up having another CT Scan in March of this year, ordered by an ER doctor – and I diagnosed with diverticulitis (which is now settled down and not bothering me at all). So I imagine they got a look at my entire pelvis when that was done? I did have a chest Xray as well – but can’t remember if that was at the 6 month, or the one year point. Maybe you are going to have a chest Xray in August? It almost seems like we want to be more pro-active than our doctors after our brush with cancer … perhaps we are over reacting, but it would still be nice to be reassured that nothing is going on with ureters and kidneys, right?

    #16038
    Bruce
    Participant

    I get urine tested every 3 months or when infections come. I’m on 6 months now but get blood work, scans and urine done. I actually have a standing order for urine tests so I can send it in when needed due to the infections.

    #16039
    Chris Lee
    Participant

    I get urine tested every 3 months or when infections come. I’m on 6 months now but get blood work, scans and urine done. I actually have a standing order for urine tests so I can send it in when needed due to the infections.

    Just to help clarify things for people….

    While there are many tests that can be done on a urine sample, they generally break down into 3 basic types.

    1) Routine urinalysis. Done in the Clinical Chemistry lab. Measures chemical “composition” of the urine (pH, sugars etc) and some minor basic cytology (presence of blood cells, bacteria and cellular casts).

    2) Urine for Culture and Sensitivity. Done in the Microbiology lab. Looking for infectious agents (bacteria) in the urine and determining which antibiotics will kill/inhibit any bacteria found.

    3) Urine Cytology. Done in the Cytology/Pathology lab. Looking at any cells found within the urine and determining their type and whether they may malignant or not.

    When a sample is taken it is up the doctors orders to determine which of the above the sample(s) is tested for. This may mean the sample is split into 3 and sent to all 3 labs, or not depending on the order.

    It has also been my experience (nearly 30 years as a lab technologist) that often, the nurse will procure samples even when there is no order. This often happens when the samples are taken before a patient sees the doctor or undergoes a procedure. After the doctor has seen the patient, they will then write the orders. If there is no order for any of the above the sample is discarded. The same goes for blood tests.
    In my lab, we often receive extra blood tubes and urine samples for which there is no test ordered. These samples are usually tossed into a bin in the lab and discarded after a while. Occasionally, we get a call from a nurse or doctor asking us to retrieve the sample to do the extra testing, most often after the results of the ordered tests are released. More often than not, the extra samples are just discarded.
    There are also times when a sample is received for routine urinalysis and after the test has been performed we get a call asking us to send the sample on to one of the other labs (most often Microbiology but sometimes Cytology). If there is still sufficient sample, then this is done.

    I hope this helps people understand things a little better.

    Chris

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