Hi Everyone, Hubby is a year and a half out from SBRT and Brachy. They did use the "spacer gel" for protection. He's been taking flomax, but this past couple of months he's had a lot of pain while peeing, and last week some blood. Urinalysis shows no infection, but on Thursday doctor suggested a cycle of Aleve and Doxy, just to be sure. Well since everything bad always happens on a holiday weekend, he's had 2 nights of passing some pretty gnarly blood clots. He was drinking a lot of water to try and flush out whatever is going on,. Today it's calmed down--no blood--but obviously, still worrisome. I've pushed him to get to see a urologist asap rather than wait the full week of treatment. Wondering if anyone else has experienced something similar, what their result and or treatment was? (Gleason 9, non-mets, dx 3/2020.) THANKS GUYS!
Pain and bleeding 1-1/2 years post ra... - Advanced Prostate...
Pain and bleeding 1-1/2 years post radiation
It's right on time: it usually happens 1-2 years after radiation. It's called late-term urinary cystitis. It is common, expected, annoying and usually transient. Your RO should have told you to expect that - it occurs in about 20% of men who've had that kind of radiation therapy. Some of the tissues are what is called "late responding," hence, the delay. Avoid cystoscopy. Sticking instruments up there is likely to make it more serious. Let it heal on its own. As long as he can pee, it's OK. (If not- if it gets plugged up, he should go to the ER to get cathered). I found Rapaflo and NSAIDs helped me a lot.
Sadly, your advice about avoiding cystoscopy was not followed by any of the urologists that treated my husband. Indeed, they did numerous such procedures. He hasn't had bleeding now for several months but is incontinent to the point only 24/7 Foley awaits him; altho' he's trying the external catheter drainage approach now.
😪
Radiation oncologists know to treat it conservatively. The problem is Urologists who are ill-informed about it. Their reflex action is to stick a tube up there to see what's going on.
In my humble opinion, urologists overall are unusual, not like other doctors. In their defense, though, the human uro system is extremely complex; men with the prostate "crammed" in, even more so. . . Appreciate your knowledgeable responses to so many here. Invaluable input!
Thank you so much Tall_Allen. I'm sorry you had to go through this as well. It's been scary. I shared your post with Hubby, who was relieved to hear it is "common, expected." He actually has a fantastic RO and we'll start there I think, before the urologist. Our RO was the one who referred us to Dr. Scholz and we avoided surgery that way. We would have had to do radiation anyway. He's been able to pee consistently thank goodness, and is drinking warm water as in his mind it will "flush the clots out." Yikes. He is way braver than me, as are you all! How long should we expect "healing" a condition like this to take? Have you or anyone else tried other support, such as soothing bladder herbs, diet, etc.?
I know it's hard to sit by and do nothing. But I'm not a big fan of herbs - there are way too many chemicals in them of unknown effect- they may irritate it more than help. His RO may want to prescribe a more powerful anti-inflammatory like a Medrol dose pak or a prescription NSAID. Whatever alpha-blocker works for him is fine. Even too much water or kidney stimulation may not give tissues a chance to heal.
Thank you, Tall_Allen. You are of course, correct. He's taking Vicodin regularly for the muscle aches (Zytiga side-effect), and because of chronic rebound headaches, he has to be careful of too many NSAIDs so we'll definitely speak with his RO before doing anything further. It's good to know that this condition does have potential to heal! Absence of information causes panic for me, and I feel better just knowing that it's not uncommon, and not necessarily an indication of doom-and-gloom. He can sometimes overreact and go to a very bad place before settling down so sharing this groups' feedback is beneficial! So much thanks to you for being here. 🤜💪😘
For me it began about 6 months after radiation. My urine turns purple because of the blood roughly 3 days a month. It is painless and apparently nothing to be worried about. It was strange the first time it happened but I got used to it. When it happens, I take Flowmax for a day or two and everything goes back to normal.
Ask your doctor to consider prescribing you trental.
It's old, safe and cheap for promoting healing of radiation damage.
It has no side effects.
It promotes capillary growth, so it is just generally good for you.
Thank you! Will do! Appreciate the advice. There is only trace blood tonight so we're hoping that's a good sign. Like Tall_Allen said, we have to be patient and let it heal. We'll definitely inquire about the Trental! 
Had the same happen to me about 2 years after radiation. It was really scary seeing blood in my urine. Fortunately, my Urologist gave me a couple of meds to help stop the bleeding. Took a couple of weeks for urine to completely clear.
Thank you for sharing your experience, and glad that you healed quickly. Hoping for the same!
I too have been there. Blood and clots on and off for a couple of years, accasional visits to the emergency room for catheteriazation. Then six weeks of heavy blood flow every time, admitted to hospital and given amino caproic acid (blood pressure dropped in half, but quickly recovered) and I have been 98% ok for the seven months since. Others have been fixed with alum or hyperbaric oxygen, so there are plenty of treatments in addition to those mentioned above.
Word to the wise.................... Liz, remember when it comes to doctors, hospitals and all medical interaction, men, compared to women are big babies.......
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 07/05/2022 7:46 PM DST
Thanks everyone who replied to my original post. It really helped a lot with the anxiety. Just wanted to give you a quick update: It's been a bit of a rollercoaster ride, though nothing has been as bad as that first holiday weekend. We didn't get into the RO because since we finished radiation, our insurance wouldn't approve but we consulted with his MO. Husband agreed that he's not yet ready to go have the urologist poke around in there just yet (though we may be there soon), and his oncologist did recommend hypobaric oxygen treatments and put in a request to insurance. The clinic that does that near us says they see a lot of PC patients post radiation and many see good results. Last night was gnarly, though--we thought we would have to make a trip to ER, but hubby finally managed a (blood clotted) pee, phew. And just in time as he had to head out of town for a very important business trip. Ugh. So he upped his Flomax to 2x in hopes of getting through the weekend safely. Trental was contraindicated due to his aortic aneurysm, bummer. We also realized that this whole thing started when he quit the Zytiga and started to wean from the 5mg prednisone. So he went back to the 5mg for now, until things stabilize...Frankly right now I'm more worried about him traveling to a trade show during a Covid surge--he may be the only N95 masker in the room... 😪 Anyway, just wanted to let you guys know how much I appreciate the moral support and wisdom in this group. 🖖
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