I had no side effects after five sessions of cyberknife at NYU Langone. PSA after three months went from 5.9 to 2.2 to now nine months post treatment at 1.3. All looks and feels good. About two months ago I started having hematospermia - blood in my semen, which is still present. The oncologist and urologist both say this is normal, yet I haven’t read about it on this forum. Now I’m having occasional blood in my urine. It’s not constant, but it is present on/off and although it’s not constant and it seems light, it has been unnerving me quite a bit. Again, the oncologist feels this could be from the radiation, but my urologist has scheduled me for a cat scan and cystoscopy to rule out bladder cancer. Just when I was feeling good about things I get hit in the head with this. I know I’ll be on this rollercoaster for life, but sometimes I just want to get off and just bury my head in the sand. I know it sounds stupid and ignorant, but I just felt the need to vent. I’m disappointed and feeling alone once again.
Thank you all for listening.
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LBRV711
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Why do you doubt your RO who has seen this a number of times? It almost always clears up on its own. If you stick instrumentation up there, it will make it worse- like picking at a scab until it bleeds. Irradiated tissue forms scar tissue that sloughs off in the urine stream. It may happen from time to time.
I am coming up to 6 months post 5 sessions of hypofractionated RT and not noticing any blood. Despite having no symptoms, I too am down for a routine cystoscopy in a few weeks time.
Tall_Allen your comment "If you stick instrumentation up there, it will make it worse" - should we therefore eschew this mode of post-surgery investigation, as a matter of course? I do vaguely recall having read somewhere that a cystoscopy should be avoided after RT due to the sensitivity of the irradiated tissue.
I understand they want to do it, because of potential bladder cancer due to RT of the prostate, which is also the concern of LBRV711.
my stupid urologist insisted I get a cyctoscopy when I first had a bit of PSA jump, the pain so so intense I jumped up and almost strangled him.....I think he damaged some nerves
I could be wrong, but I thought bladder cancer was a longterm risk of radiation to the prostate -- i.e. something that could develop many years, possibly decades later, as opposed to months later. Also, my RO insisted that I show up for each radiation session with a liter of water in my bladder, which pushes the organ out of the path of the radiation beam. If yours did, too, that presumably lowered your risk. I'm not saying you shouldn't be concerned (this is a scary disease) but I suspect your RO knows what he's talking about.
Yes. I had to really fill up with water. Hopefully that helped to protect me, and I wouldn’t assume that if I have bladder cancer it’s due to the SBRT I had 9 months ago, but i nstead a situation where I would have cancer in both places. I have been drinking more water, staying away from ejaculation for a while, and hoping for the best. I haven’t seen any visible blood in the urine for the past 5-6 days, so I am hopeful. I found another urologist to visit and I’m hoping he knows about the CXbladder test in lieu of a cystoscopy. However, I’m really hoping that a new regular urine analysis shows no more signs of blood in urine, and then I’m hoping we can put this on a shelf indefinitely! Thanks for your response.
Thank you. I’ve already been doubting my decision. The oncologist said that I can go followup with my urologist, but he assured me that this was common. I mentioned the CX Bladder test to my urologist that I learned about from a prostate research institute video I watched, but my urologist never heard of it. Dr Scholz highly advised that test if the Dr feels it’s needed after radiation treatment with hematuria. Not invasive and part of a urine analysis. So maybe it’s time to find another urologist. Much to think about again. Thank you Tall Allen for your kind response.
It's clear you're going through a lot, and it's completely understandable to feel frustrated and anxious, especially when things were looking positive. Having side effects like hematospermia and blood in your urine after radiation, even if deemed "normal" by your doctors, can still be unnerving, especially when you haven't seen much discussion about it. It's tough to stay grounded when the rollercoaster of health uncertainties continues.
Radiation can sometimes cause late effects on surrounding tissues, and while it's a relief that both your oncologist and urologist think this is within expected boundaries, it's still scary to face further tests like the CAT scan and cystoscopy.
You're not alone in this, even if it feels that way sometimes. It’s okay to vent, and it’s normal to have those moments when you just want to shut it all out. If you ever want to talk more about it, I’m here to listen or discuss things further. Keep hanging in there, you're stronger than you might feel right now.
It sounds like there’s a lot of uncertainty and differing opinions about post-radiation procedures, especially around the need for cystoscopies in situations like this. Tall_Allen’s point about avoiding cystoscopy due to the sensitivity of irradiated tissue is important, particularly if there’s a risk of further irritation or injury. At the same time, it makes sense that your urologist wants to rule out bladder cancer as a precaution, especially if hematuria (blood in the urine) is present.
It’s interesting that you mentioned the CX Bladder test, which is a non-invasive alternative that can help identify bladder cancer through urine analysis. If your current urologist isn’t familiar with it, it might indeed be worth seeking a second opinion, especially if you feel unsure about the direction of your care.
You’re not alone in these feelings of doubt—many people experience similar uncertainties after treatments, especially when dealing with side effects and the potential for further invasive tests. It’s a balance between trusting your doctors and advocating for yourself, and it sounds like you’re doing a great job staying informed and exploring all your options.
Thank you so much for reaching out. It’s interesting how even though I have people around me who love me, for some reason I still feel alone. But this forum has been so helpful and so healing for me. What a God send. Thank you again.
Your not alone. I spent 3 days crying when i found out i had cancer but soon just realized thus was something that must be over come. God has bless me regardless.
I live with undercover police in my house and it is difficult to think about my cancer especially if nobody believe that I had to dye 3 years ago from cancer and I am still here six years after my diagnosis only on degarelix and recently started bicalutamide with PSA only 3 and possibly (hopefully) no visible bone Mets on the scans. I also realised that before I was like you more emotionally vulnerable but now it looks that I am totally used to my low testosterone levels and I am now more psychologically stane than ever. I stay here because I am only 5 minutes from the hospital and that is the most important for me.
"It sounds like you’ve been through a lot, both with your health and your current living situation. It's impressive how you've not only managed to survive far beyond expectations but also adjusted to the challenges of low testosterone and the emotional toll that can take. Staying close to the hospital, especially with your history, makes sense and must offer some peace of mind, even with the difficult circumstances at home.
If it helps to have a space where you can talk about your experiences or thoughts, feel free to share more anytime. I'm here to listen." ChatGPT said
i am on proton radiation and hormone therapy. Not sure about blood in semen while i am in radiation. The hormone therapy kills my sex drive, when i does happen, the organism is dry. I did have blood in seamen after biopsy. I is very scary and unnerving. I lasted for awhile after. Better safe than sorry, glad you are getting checked.
Not talked about much on here, but RT seems to be the unwanted gift that keeps on giving for some, long after Tx ends! Agree with TA on this; occasional/episodic blood in urine is to be expected. Especially if some of it appears a little clotted. Happened to me 2x so far (shortly after treatment, and again 2-3 yrs later), but mine was from full pelvic salvage IMRT. I’m 5 yrs out from last radiation session and believe this has resolved on its own. However, just now experiencing significant bowel dysfunction (docs investigating radiation caused cystitis/proctitus) and occasional, mild incontinance during sleep. My brother who had cyberknife also had latent but short term blood of some type in his urine.
Wishing you the only the best in your treatment, and hoping for fewest possible side effects.
Thank you for sharing your story. I haven’t seen any blood now for four days. When I did, it was always at the start of urination and quickly ended. My GP, who is a close friend of mine, said that is quite common from the prostate radiation. So I’m going to wait a while to see if this resolves itself while I look for a new urologist.
I think of these events in terms of probabilities. It is unlikely that what you describe is a poor outcome based on what you’ve been told by your doctors and on top of that the unlikely probability that something like a bladder cancer just happens at the same time. I would rest easy and take it all in stride as things develop and you hopefully pass through this successfully
I had gross hematuria at 9 months after MRI-linac 5 sessions. They didn't follow the every other day regimen (long story) and I had treatment 3 straight days while other 2 were spaced within the 10 days. And I do mean gross. A couple really big glops. Months later it occurred to me that it was as close as I could come to having a baby. Very scary but I also did not treat my BPH symptoms before cancer treatment because at the time they were mild and only got worse when it was too late to postpone the RT. My bad. Cystoscopy revealed some damaged and dead tissue. Doc said it could resolve on its own or suggested Hyperbaric Oxygen Treatment. I also started Flomax. I did 57 straight weekdays (probably 10 too many) in a very large tank holding up to 8 people with 2 movie screens. It fixed me up (last treatment was 11 months ago) but advanced my cataracts (known side effect) very quickly. Ophthalmologist said I would eventually need cataract surgery in any case so not too big a deal and it is a routine procedure. Flomax working great. TA's advice is spot on in my opinion.
Wow. Thank you so much for sharing your story. I’m so pleased your hematuria was resolved. I’m presently shopping for a new urologist because when I cancelled the cystoscopy to give it some time to see if it resolves, he seemed a bit out off and said he was only trying to check for something more serious. Of course I know the reason, but he knows nothing about the CXbladder test, and I feel it’s a much more appropriate next step.
I’m glad your doing well, and hoping my situation resolves on it’s own and certainly hope it’s not bladder cancer.
I've had 9 urologists of some sort In my situation bladder cancer came up but the chances of that were considered very small unless it was there before my RT because cancer usually(always usually never definitely with RT) takes longer than 9 months to manifest and there is no history of cancer in my family except my father's PC. I was not aware of the CXBladder test and it was not mentioned to me. With the amount of blood you are having it is smart to wait in my opinion. I waited maybe a bit too long because 9 months just doesn't fit the normal profile of RT issues. Doctors generally don't like pushback or suggestions (tests etc.), (I'll never be their favorite patient :)) that's why it is so refreshing to watch Dr. Scholz on youtube. I did suggest to my first RO that I might be able to do without ADT because my cancer did not look that aggressive and he was ok with that if Decipher came back low or intermediate risk and the other 2 agreed and that's what I'm doing so far (2years). They were all very good doctors only the last one had the treatment I eventually decided on and I had to go out of state. Good luck, drink lots of water and keep us posted!
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In my situation bladder cancer came up but the chances of that were considered very small unless it was there before my RT because cancer usually(always usually never definitely with RT) takes longer than 9 months to manifest and there is no history of cancer in my family except my father's PC. I was not aware of the CXBladder test and it was not mentioned to me. With the amount of blood you are having it is smart to wait in my opinion. I waited maybe a bit too long because 9 months just doesn't fit the normal profile of RT issues. Doctors generally don't like pushback or suggestions (tests etc.), (I'll never be their favorite patient :)) that's why it is so refreshing to watch Dr. Scholz on youtube. I did suggest to my first RO that I might be able to do without ADT because my cancer did not look that aggressive and he was ok with that if Decipher came back low or intermediate risk and the other 2 agreed and that's what I'm doing so far (2years). They were all very good doctors only the last one had the treatment I eventually decided on and I had to go out of state. Good luck, drink lots of water and keep us posted!
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