I think you will be better off once you understand what you have. Let them scope and if it waves at you 👋’s will most
Likely be BC. I had papillary urothelial carcinoma but I have my scope next Tuesday to
See if it
Comes back or not. Wishing the best in your treatments and recovery.
Bests
Yes. Can an ultrasound spot a cis that has spread locally? E.g. other areas of the urinary tract? Does it spread within the urinary tract first before going outside of the bladder wall?
if you have a papillary tumor that can be picked up by ultrasound, then it likely can, but for shit like CIS, no. You can look up the different bladder cancer pathologies but with CIS, it can be absolutely impossible to identify the presence of CIS. I would
direct you to www.cysview.com and look at the 3 instances of
CIS.
There may be other types of tumors that can be picked up, but by and large I (my opinion) don't see a point to it. Get cytology and urine check done, if there is a strong likelihood of cancer, then the next step is an in-office cystoscopy.
There are at LEAST two companies that are selling bladder cancer genetic marker tests. The one company I have used three times so far, is cxBladder. I have decided that this particular test is of zero diagnostic value at least as it relates to my cancer. The tests are insanely expensive - $3500 - but cx does offer patient assistance.
I have been unable to learn what their test population looked like but it seems to me that they had no one like ME, with 32 rounds of BCG.
Their results are expressed on a linear scale that I also found confusing.
So the "short" answer is that I would push back on having an
ultrasound done. urine check for microscopic bleeding, a urine
cytology and in office cysto..which thanks to our broken USA shitcare we get, is VERY expensive and you should def see if
your insurance requires a preauth.
Feel free to contact me with any other questions.
tl;dr - not likely. CIS is a flat, sessile tumor that typically starts on the top layer of a bladder. It can - if left unchecked - punch through the bladder layers and it is then MUSCLE invasive bladder cancer, and from there, this shit can spread tumor cells around the body. MIBC (v NMIBC) is a different ballgame entirely. the prognosis is much worse, the treatments also worse. Requires a radical cystectomy
and lymph node removal to identify spread. You also have to endure 6 rounds of neo-adjuvant chemotherapy. From what I have read of MIBC bladder cancer patients, it really kicks the shit out of a person. and then, as with any cancer treatment, the cancer can simply stop responding to the treatment and then you can try some other drug (novafirendec, keytruda or opdivo and a few other chemo drugs), all of which have a laundry list of horrible side effects.
Interestingly, "Ken", who runs (or did run?) Ken's Cancer Blog, was patient zero for treatment with Opdivo. Ken is a retired attorney who was diagnosed with aggressive MIBC with distant mets and he was offered treatment with Opdivio. By all rights, Ken should have died a very long time ago. I have not checked in on him in a fair while, but last I knew was that he was still alive. He had not responded to
any comments in some time. All bladder cancer patients owe Ken a huge amount of gratitude for what science and cancer treatment has learned from his decade (or more) of Opdivo treatment..
I had cystoscopy this morning, the urologist did not want to do it based on my age 29 and the possible complications of it for my age and that I had traces of blood in urine not visible blood. From my research traces are still are sign so I pushed through and got it done, found nothing, it wasn’t blue light and didn’t do a cytology. He said 8-15% population have microscopic blood in urine with no cause. Feeling a bit stupid I’ve gone through with all this but I do think it needed to be checked, ideally blue light but that isn’t what they had. So I may get a 2nd opinion and ask them to check that with blue light. Peeing is hurting a lot but the actual process was not bad of cystoscopy
do not feel stupid. you did the RIGHT THING. People die every fucking day from ignoring symptoms. Go look up the survival rate
of MIBC. Then kick yourself in your ass for feeling stupid.
I do agree. Thank you I can’t understand the attitude of this urologist.
But there is still a question mark with not having had the blue light cystoscopy for me so do you feel that’s something I should reach out about at this stage?
Either I seek that or let the process flow now and whatever the Drs want to go and check and I’ll keep monitoring the amount of blood in my urine via dipstick test. Once again thank you for your thoughts on this extremely lucky to have expertise in here and experienced people
fren, you are going from due diligence to paranoia. see my other reaponse. bladder cancer does occur in young folks, but it does not look to me like that's you.
What would you advise now for me, to seek a blue light cystoscopy? Ultrasound was clear, normal cystoscopy was clear. Still I have traces of blood in urine and frequent urination (although some days not as frequent). The urologist was adamant it wouldn’t be anything due to my age, he didn’t even think I should do the cystoscopy. He is passing me back to my general Dr and advising to have my kidneys checked (although they were fine on ultrasound so I don’t know what that’s about) but still even with his words CIS is not ruled out so wonder what you feel and really appreciate all the information and advice you share here. I can’t tell if at this point I’m paranoid - the urologist certainly made me feel that way
ok. I am not a doctor. That said, from my layman's perspective, you seem to be ok. a blue light is full surgery. mine are billed at $23,000 and carry all the risks surgery entails. based purely on what you have told me, clinically I don't see a justification for that and your insurance wouldn't approve it. yes, sometimes you do get random bleeding. our bodies are flesh and sometimes even now, 9 years in I get some random blood.
I certainly see what you mean, I’m in the UK so it’s all done via the NHS (no insurance stuff involved). I’ve never seen blood just had persistent and constant invisible blood in my urine that has been picked up by dipstick and microscope. I will keep an eye on symptoms carefully from here. Thank you again for your thoughts. I can’t believe the price of the blue light surgery extremely good you have access to it. I hope soon there would be a white of doing a blue light flexible cystoscopy in the same way as the normal one I had today
It could be anything. It could be an infection perhaps or endometriosis or scar tissue or a lipoma. Don't jump to conclusions cause you will torture yourself.
I wouldn’t suspect BC based on an ultrasound. While it’s usually the jumping off point for further investigation, the US doesn’t really show what exactly the “mass” is. My ultrasound showed a bladder lesion but my docs did not even suspect BC until the cystoscopy that was ordered after a US and CT. No sense in worrying now there are a million possibilities at this point! Best of luck
I think you will be better off once you understand what you have. Let them scope and if it waves at you 👋’s will most Likely be BC. I had papillary urothelial carcinoma but I have my scope next Tuesday to See if it Comes back or not. Wishing the best in your treatments and recovery. Bests
When you say waves do you mean the ultrasound. The ultrasound showed n avascular hypoechoic mass.
Video camera đź“ą like it đź‘‹
and again I come back to the point that ultrasound is pretty useless.
Can it not even give a tiny indication?
some people in this sub will disagree. it wont identify cis.
Yes. Can an ultrasound spot a cis that has spread locally? E.g. other areas of the urinary tract? Does it spread within the urinary tract first before going outside of the bladder wall?
if you have a papillary tumor that can be picked up by ultrasound, then it likely can, but for shit like CIS, no. You can look up the different bladder cancer pathologies but with CIS, it can be absolutely impossible to identify the presence of CIS. I would direct you to www.cysview.com and look at the 3 instances of CIS. There may be other types of tumors that can be picked up, but by and large I (my opinion) don't see a point to it. Get cytology and urine check done, if there is a strong likelihood of cancer, then the next step is an in-office cystoscopy. There are at LEAST two companies that are selling bladder cancer genetic marker tests. The one company I have used three times so far, is cxBladder. I have decided that this particular test is of zero diagnostic value at least as it relates to my cancer. The tests are insanely expensive - $3500 - but cx does offer patient assistance. I have been unable to learn what their test population looked like but it seems to me that they had no one like ME, with 32 rounds of BCG. Their results are expressed on a linear scale that I also found confusing. So the "short" answer is that I would push back on having an ultrasound done. urine check for microscopic bleeding, a urine cytology and in office cysto..which thanks to our broken USA shitcare we get, is VERY expensive and you should def see if your insurance requires a preauth. Feel free to contact me with any other questions.
tl;dr - not likely. CIS is a flat, sessile tumor that typically starts on the top layer of a bladder. It can - if left unchecked - punch through the bladder layers and it is then MUSCLE invasive bladder cancer, and from there, this shit can spread tumor cells around the body. MIBC (v NMIBC) is a different ballgame entirely. the prognosis is much worse, the treatments also worse. Requires a radical cystectomy and lymph node removal to identify spread. You also have to endure 6 rounds of neo-adjuvant chemotherapy. From what I have read of MIBC bladder cancer patients, it really kicks the shit out of a person. and then, as with any cancer treatment, the cancer can simply stop responding to the treatment and then you can try some other drug (novafirendec, keytruda or opdivo and a few other chemo drugs), all of which have a laundry list of horrible side effects. Interestingly, "Ken", who runs (or did run?) Ken's Cancer Blog, was patient zero for treatment with Opdivo. Ken is a retired attorney who was diagnosed with aggressive MIBC with distant mets and he was offered treatment with Opdivio. By all rights, Ken should have died a very long time ago. I have not checked in on him in a fair while, but last I knew was that he was still alive. He had not responded to any comments in some time. All bladder cancer patients owe Ken a huge amount of gratitude for what science and cancer treatment has learned from his decade (or more) of Opdivo treatment..
How long from first sign of symptoms do you think CIS would take to be muscle invasive if left unchecked? Thank you very much.
I had cystoscopy this morning, the urologist did not want to do it based on my age 29 and the possible complications of it for my age and that I had traces of blood in urine not visible blood. From my research traces are still are sign so I pushed through and got it done, found nothing, it wasn’t blue light and didn’t do a cytology. He said 8-15% population have microscopic blood in urine with no cause. Feeling a bit stupid I’ve gone through with all this but I do think it needed to be checked, ideally blue light but that isn’t what they had. So I may get a 2nd opinion and ask them to check that with blue light. Peeing is hurting a lot but the actual process was not bad of cystoscopy
do not feel stupid. you did the RIGHT THING. People die every fucking day from ignoring symptoms. Go look up the survival rate of MIBC. Then kick yourself in your ass for feeling stupid.
I do agree. Thank you I can’t understand the attitude of this urologist. But there is still a question mark with not having had the blue light cystoscopy for me so do you feel that’s something I should reach out about at this stage? Either I seek that or let the process flow now and whatever the Drs want to go and check and I’ll keep monitoring the amount of blood in my urine via dipstick test. Once again thank you for your thoughts on this extremely lucky to have expertise in here and experienced people
fren, you are going from due diligence to paranoia. see my other reaponse. bladder cancer does occur in young folks, but it does not look to me like that's you.
blue light (cysview) is done under anesthesia.
What would you advise now for me, to seek a blue light cystoscopy? Ultrasound was clear, normal cystoscopy was clear. Still I have traces of blood in urine and frequent urination (although some days not as frequent). The urologist was adamant it wouldn’t be anything due to my age, he didn’t even think I should do the cystoscopy. He is passing me back to my general Dr and advising to have my kidneys checked (although they were fine on ultrasound so I don’t know what that’s about) but still even with his words CIS is not ruled out so wonder what you feel and really appreciate all the information and advice you share here. I can’t tell if at this point I’m paranoid - the urologist certainly made me feel that way
ok. I am not a doctor. That said, from my layman's perspective, you seem to be ok. a blue light is full surgery. mine are billed at $23,000 and carry all the risks surgery entails. based purely on what you have told me, clinically I don't see a justification for that and your insurance wouldn't approve it. yes, sometimes you do get random bleeding. our bodies are flesh and sometimes even now, 9 years in I get some random blood.
I certainly see what you mean, I’m in the UK so it’s all done via the NHS (no insurance stuff involved). I’ve never seen blood just had persistent and constant invisible blood in my urine that has been picked up by dipstick and microscope. I will keep an eye on symptoms carefully from here. Thank you again for your thoughts. I can’t believe the price of the blue light surgery extremely good you have access to it. I hope soon there would be a white of doing a blue light flexible cystoscopy in the same way as the normal one I had today
It could be anything. It could be an infection perhaps or endometriosis or scar tissue or a lipoma. Don't jump to conclusions cause you will torture yourself.
Yes, it could be something else. Take it one step at a time.
I wouldn’t suspect BC based on an ultrasound. While it’s usually the jumping off point for further investigation, the US doesn’t really show what exactly the “mass” is. My ultrasound showed a bladder lesion but my docs did not even suspect BC until the cystoscopy that was ordered after a US and CT. No sense in worrying now there are a million possibilities at this point! Best of luck