Need for Cystoscopy?

[DJBUNK]

Quick recap of my situation: RP in Sep 2019 for G9 w/SVI, LN+, and high risk Decipher. RT 8 months later along with 24 mth ADT (just finished). About 2 months ago, I noticed a drop of blood coming from my uretha at the tip of my penis. My urologist ordered a CAT scan (which was clean) and cystoscopy which I will have tomorrow.

I only ever noticed blood in my urine that one time which makes me wonder if a cystoscopy is needed. I should add that I have had blood in my stool, sometimes significant amounts, for almost a year now (beginning about 8 months after radiation ended). I have an appointment with a GI doctor in a few weeks for that. Otherwise, my health is good.

I don't mind the cystoscopy if needed, I just don't want to subject myself to unnecessary invasive treatments if there is any risk of further harm. I'm reluctant to get a colonoscopy for the same reason.

Are my concerns founded, or am I being too risk averse?

Thanks

[Tall_Allen]

I agree with you. The radiation and the surgery create scar tissue at the anastomosis. When the scar tissue breaks off from time to time, it bleeds a little. It is expected. When you complain about it to your urologist, he must investigate. A cystoscopy can disrupt more scar tissue and cause more bleeding. If you had mentioned it to your RO instead of your Uro, he would probably have told you to see if it goes away on its own. The more you complain about expected side effects, the more they will investigate.

[fritz1]

I started having similar issues (hematuria) two years after I completed radiation treatment for biochemical recurrence of Pca in 2018 after having a prostatectomy in 2012. I had an abdominal cat scan and a cystoscopy recently to check for any abdominal or bladder cancer as the cause. results came back negative. I was advised that hematuria was the result of Cystitis in the bladder. Cystitis is a common condition after radiation and can arise long after the completion of radiation treatments. Doctors told me not to worry about it. Only question now is whether after a period of time I should have another cysto/cat to make sure the hematuria is still attributable only to the cystitis. I'm not sure that the cystitis will ever heal itself but at least for now, it's not a condition to lose sleep over.

[Doseydoe]

IMHO, the best way to see what's going on in your bladder is by having a cystoscopy, your taking the prudent approach. 😎 DD.

[SimplyT]

I had the same situation recently and was told that it was probably radiation cystitis. Hematuria occurred again and I went in for a scope that discovered a tumor in my bladder. I have an upcoming Turbt to address the situation next week. Be proactive.

[beachguy43]

I had the exact same experience 6 weeks ago. I was not concerned about the hematuria and thought I could convince the doctors that I did not need to be scoped. The scope revealed a significant mass which was removed via turp a week later. I will go back for follow up scope in June. BTW, I am fifteen years post RT.

[Don_1213]

You've received a lot of good advice above.. my experience was - that having the best urologist you can find, who does more than 500 or so cystoscopies a year can make all the difference.

I had intermittent hematuria - never for long - never a lot. My local urologist blew it off saying it was nothing. My radiation oncologist didn't think it warranted a lot of attention, but - my medical oncologist (a leading MD from Columbia Presbyterian in NYC) immediately asked me to get a cystoscopy - in case it was bladder cancer. Get it as soon as possible sort of thing.

Long story short - he recommended and arranged for a colleague of his at Columbia/Presbyterian to do the cystoscopy. The doctor is James McKiernan, MD. doctors.columbia.edu/us/ny/... - he's "Chair" of the urology department, and "urologist-in-chief". It's a bit of a PITA for me to get to Columbia, but in this case - it was well worth it.

The local urologists when talking about a cystoscopy immediately started talking about general anesthesia - which complicates things and increases risks and potential side effects - requiring clearances from my cardiologist (due to 5 stents and some other odds and ends..) and requiring me to arrange for transportation assistance. Dr. McKiernan never asked for any of this - I was just asked to be there at a certain time.

I arrived - was immediately "processed" (brief medical history and review of my prescription), given a gown, and told to put it on and hop on the stainless table in a room with quite a few video monitors. Dr. McKiernan came in the room, we engaged in some minor chit-chat as he proceeded to thread the probe where it needed to go. There was NO pain, NO discomfort and it was overall - relaxing. When he got it in position, he turned one of the monitors so I could see it and moved the probe around while explaining what he saw. There was no additional cancer in the bladder. There is some scar tissue in the urethra around the outlet from the prostate (I had RT) and he said that's what's causing the bleeding. My kidneys looked fine (ejecting into the bladder correctly) - and about 15 minutes after walking into the room I was walking back out - and I drove home (I brought my wife just in case.. )

The difference between this experience to what I've experienced locally in suburban NJ convinced me that going to the best is really worthwhile.

Find the right MD and cystoscopy is not a big deal. On a scale of 1-10 going from no big deal to big deal - it's a solid 1 when done by Dr. McKiernan. I'd strongly recommend getting it done - your mind will be relieved when nothing is found. Mine was..

👍