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Posted 6/5/2013 2:17 AM (GMT 0)
Hi everyone,
My husband had his 8 wk checkup after having LD Brach yesterday with the Uro Dr. He has been having a really hard time being able to urinate and empty his bladder. The Dr. felt like he was indeed retaining too much and they taught him to self catheterize. they took almost a full liter of urine in the drs office!!
They suggested he cath at night so he can rest and not be up 7 to 15 times straining trying to urinate. we got home late and he went on to bed without doing the cath and woke me up at 4 to help him cath. He then went all day long without urinating or using a cath until just now .
is that ok to just cath and not try to urinate on his own?? the dr originally said to do at night but they gave him enough caths to use two a day. He was soooo happy to be able to "empty" and I hate to nag him. he said last night he felt better than he had in 8 wks !!! any thoughts or suggestions??
Posted 6/5/2013 2:20 AM (GMT 0)
Hi freaked....personaly ive never been cath'd but I did have problems at first until the HT shrank my tumor....not being able to go is quite frustrating...hope he gets better soon...chris
Posted 6/5/2013 2:25 AM (GMT 0)
I had a lot of retention problems post surgery, but my doctor would never allow me to self-cath, as he felt there was too much risk of me damaging myself in the process. So instead I spent a lot of time with different catheters, while the stricture issues were being resolved.

Has his doctor suggested scoping your husband, to see if any strictures are taking place? I would think it would be a reasonable step in finding out the real cause of his retention.

david in sc
Posted 6/5/2013 2:25 AM (GMT 0)
Freaked,
Urinary retention can cause kidney damage and bladder problems. Consult the doc, but catheterizing with precaution to avoid infection is reasonable to avoid kidney/bladder damage.

RalphV
Posted 6/5/2013 2:48 AM (GMT 0)
i think dr is letting him self cath since he is (was) peeing during the day but NOTHING at night. I just didnt know if it was ok to "just cath" and not "try" to go. I guess things need to heal tho.
Purgatory...what causes those strictures?? dr hasnt mentioned it but then again hubby told him that he can pee fairly good during the daytime.
Casper ....how long did it take for the HT to shrink your tumor?? He had LD Brachy and I'm not sure how long its going to take.

They did do a PSA and he is down from 5.4 to 2.1 . seems like thats pretty good. this is all such a 'different" journey for us. hoping hes gonna be in good shape for our anniversary trip to Alaska in August. We're staying positive and hoping for the best!!
Posted 6/5/2013 2:52 AM (GMT 0)
Not sure how fast brachy works....I had 45 days IMRT. after the first 2 weeks I noticed I could urinate more freely and less often....The Lupron is what gave me the shrinkage....My Dr told me it would take several months for the radiation to take effect. I tried Flomax but had serious allergic reactions to it.
Posted 6/5/2013 3:15 AM (GMT 0)
Freaked, I'm not sure if the "Uro Dr" you mention is associated with the Rad Onc that did the Brachy - if not I would definitely get ahold of the Rad Onc - what you're describing is NOT typical of 8 weeks out from LDR Brachy.
Posted 6/5/2013 3:27 AM (GMT 0)
yooper........he is assoc with the ONC dr. they did the procedure together. I just figured the uro dr would be treating this problem. Im so confused. I dont know who to call. Uro dr just says Its going to take time but I dont read about anyone that had brachy having this kind of problem. cry hubby is such a trooper and of course we dont know what to expect or what is normal or not normal......
they keep saying "everyone is different and heals differently"
Posted 6/5/2013 5:03 AM (GMT 0)
Freaked - not good to have to deal with that problem.

It might be that if he hasn't been resting at night he might not be healing as fast. Maybe if he uses the cath for a few nights, he'll get some quality sleep. That goes a long way towards healing.

just a random thought I had.
Hang in there,
Andrew
Posted 6/5/2013 5:11 AM (GMT 0)
thanks Andrew...i appreciate ANY thoughts or comments. Its just tough when you dont know exactly what you're dealing with and things seem to happen that you didnt expect to happen. Its mind boggeling at best...
Posted 6/5/2013 8:12 AM (GMT 0)
Freaked,
I am concerned that you wrote that hubby did not urinate all day and only emptied his bladder by catheterization late in the evening after returning home, is that correct? Do you have any way of measuring urine volume when your hubby is cathed? An overstretched bladder will lose its tone and the detrusor muscles won't be able to function properly if overdistention is allowed to become the norm. If the volume measured when catheterized is higher than ~500 ml, I believe hubby is risking overdistention. When the bladder starts to get full, a signal to the brain is triggered and a reflex signal is sent to the detrusor muscles in the bladder to contract to empty the bladder. We sense this as urgency, and we are aware that we need to void. If a person does not or cannot void when urgency is felt, the bladder fills up even more and with time urgency becomes pain. That's too long a time to wait to empty the bladder and the bladder volume is usually quite high at that point. If hubby is able to void during the day and his retained volume when catherized is less than ~500 ml, I would say things are going fairly well. But 500 ml may not be the volume that your doctor considers acceptable. Please call your doctor and ask what he feels is the maximal safe retained volume when catheterized. If hubby is above that safe number he may need to self catheterize more frequently until his condition improves.

Joe
Posted 6/5/2013 6:35 PM (GMT 0)
bump..... Our friend "freaked" and husband seem to be in a bad place - can anyone else weigh in and help them?
Posted 6/5/2013 6:51 PM (GMT 0)
freaked, is he drinking a lot of water? I got paranoid about retention a day out of surgery and realized it was partially due to lack of drinking water. My surgeon also told me to take a hot bath and try to relax. I know these are very basic suggestions but I don't know what more to say other than to keep contacting your doctor.
Posted 6/5/2013 11:31 PM (GMT 0)
WOW!!!! thanks everybody for all this info and suggestions. Joe you said exactly what I have been feeling is taking place. I have been on the phone with the Onc Dr as well as the Uro Dr today.

My main question has been: If he caths every time he feels he needs to go but is unable to really empty his bladder.....will his body "forget" (for lack of a better word) how to go on his own. The Uro Dr says cath any time he feels full but cant go.....Cathing is the prefered choice over straining and straining and not really going and letting the bladder get too full and stretch.

Onc Dr says absolutely cath if he cant go and to avoid letting the bladder get like it was on Monday when they took 1 liter or urine out of his bladder in the Uro office. Onc Dr says the bladder and muscles absolutely can get lazy so he should cath only if has tried to go on his own first. He cathed right before bed last night and slept ALL NIGHT LONG!!!! this hasnt happened for several years!! Thank you Jesus!!!! hahaha. David I reminded him today about drinking lots of waterr and yes...it is hard to drink if you think you're not going to be able to pass it. I feel so bad cause his lower abdomen was really distended Sun night and he thought he he was having more bowel problems :( its hard when you dont fully know what to expect. hot baths do seem to help....esp now after he removes the catheter.

Joe ...i couldnt get the Uro Dr nurse to commit to a specific number as far as how much urine he passes with the cath. She said his bladder was probably already stretched so she just didnt know. I DID buy something to measure the output myself. I seem to have a betterr relationship with the Onc Nurse so Im going to call her tomorrow and see if she can help me with a base number. So far today.....he has been able to empty on his own with no straining!!! Yay!!! Maybe getting that 1 liter out of there is going to give him a fresh start!! He plans to cath at bedtime......to at least get some quality sleep. Myself.....I think that getting good rest is a key to helping you heal......along with good nutrition and moral support. ( good call Andrew!! )

we feel better things today and I owe a lot to all you guys!! he's in a much better place mentally .....and feeling like its all going to be ok.
What has been hard for me is not being able to put a timeline on all this........sooo many variables......and everyone's body is different.
Thanks again and I'll be posting about "our" progress!!
Diane :-)
Posted 6/6/2013 3:33 AM (GMT 0)
Hi Freaked, sorry to hear about your husband. I had a severe retention episode following the biopsy, so I was terrified of the treatment to follow
.
First, which seeds were implanted, Pallidium 103 has a half life of 17 days, so the worst of the urinary symptoms should subside within 4+ weeks. Other seeds remain “hot” for much longer, which results in more prolonged irritation

As others have stated, severe retention can damage the kidneys, nothing to fool with

He may need stronger anti-inflammatory meds and to increase the flow-max type meds, especially at night. I take 2mg’s of Terazosin twice a day but was instructed to take up an additional 4mg’s at night if needed

They can do testing to see if there are any anatomical concerns. I had a small indent in the median lobe that was restricting urinary flow, that had to be shaved off with green light laser. Even with the prostate shrunken down to 20cc. I would have been in the same position after Brachy, if I hadn’t done that

A very extensive bladder and flow test given by my Uro, involving catheters front and rear, with sensors attached to the skin, determined it needed to be removed and that my problems weren’t related to the bladder itself.

Not saying your husband has that, but it sounds like his doctor needs to determine what exactly is causing of retention and treat it asap.
Posted 6/6/2013 3:46 AM (GMT 0)
Fauntleroy.....he had the low dose seeds so they're gonna be hot a while longer. He has heart problems and the heart Dr isn't keen on high dose anti-inflammatories in high doses. He does take some.....
Also he is taking Flomax twice daily and that is lowering his blood pressure. Got a call in to the heart dr to see if we can regulate the BP meds and keep taking the Flomax. He did pretty good emptying on his own today without straining but when he cathed at bedtime he got nearly 1 liter AGAIN!!! I know this isnt good and I'm fearful of some blockage. His Uro dr made his appt to come back for Sept!!! I think that's too long in light of what is going on. Ugh......I'm exhausted thinking about it!
Posted 6/6/2013 5:05 AM (GMT 0)
My hubby is 3 weeks out from his LDR brachy. He is not having any issues with urinating. He takes flomax before bed each night and drinks a lot of water throughout the day. He started feeling very fatigued this week and has been napping a lot.

I hope things clear up for your hubby soon.
Posted 6/6/2013 11:52 AM (GMT 0)
Diane,

I'm sorry your docs aren't giving you more detailed guidelines on what to expect from the intermittent catheterizations. Well let's try to figure out if he is going to improve or just stay the same with the instructions you have been given so far. I would report to your doc your concerns that his night time volume is a liter and ask what else can be done to get that volume down. I'm encouraged that your hubby is able to void without straining during the day, so he has made some progress already.

During the day, ask hubby to try to void every 4 hours. At night, hubby needs to empty his bladder naturally just before catheterization. That's so the measurement of retained catheterized volume stays consistent. Collect and measure the catheterized urine volume. Record that amount. At this point his bladder is empty and he should be able to sleep all night without needing to void. Try to have him wake up at the same time every morning and measure the amount of urine he can produce naturally. Record that amount. On average the kidneys produce about 500 ml urine during the night in 6-7 hours. I'm going to guess that he can only void a fraction of that amount naturally in the morning right now. Over time the nightly catheterized volume should be getting smaller and his natural morning volume should be getting larger. If this doesn't happen, then I would express concerns again with your docs.

Joe
Posted 6/6/2013 12:31 PM (GMT 0)
Hi Diane, glad to hear there has been some improvement and I truly hope that continues. Others have added much - at this point I would simply say that waiting until September is way too long..... if his current Uro won't bring that appointment in sooner then I would start looking for a new Uro.

Best to you both.
Posted 6/6/2013 5:24 PM (GMT 0)
Joe,
After he voids naturally in the morning and try's to void every 4 hrs, should he try an additional Cath during the day sometime to keep that night time Cath -before-bed volume down ? He cathed mid morning today after voiding "some" earlier but he was still over 600 ml .
Thank you so much.....everyone....for taking the time and trying to help.

Diane
Posted 6/6/2013 5:36 PM (GMT 0)
Also.....when he voids on his own in the morning first thing......is this the only time we need to measure his natural efforts......??
Posted 6/7/2013 3:41 AM (GMT 0)
Diane,

I'm still new here but I understand HW's goals and missions and its rules. While we try to empower ourselves by sharing a collective source of information and experiences, none of us should be altering our doctors' decisions and treatment plans on our own. We're all here for one another and learn a lot from one another when we share our experiences and our acquired knowledge but only our docs can make medical decisions. Having said that, we can keep them honest by arming ourselves with knowledge and keeping good records on how treatments are going. We need to let them know when things are improving and also when they are not going so well. We also need to let them know when we don't understand things because what may seem obvious to them is not obvious to you, the nonmedical member of the team.

Let your docs know you are overwhelmed by the responsibility of managing this complication of prostate cancer therapy and you need to have an office visit to go through the game plan in detail. Your docs said 1 Liter of retained urine was unacceptable so let them know that you're seeing that at night and that hubby's midday cath measured 600 ml and ask if they feel there are enough benefits for performing a routine midday catheterization as well as the bedtime catheterization that outweigh the risks of extra catheterization. Every catheterization increases the risk of introducing bacteria and getting an infection so there's no free lunch. Ask what end points they plan to use to decide when to decrease catheterizations and eventually stop catheterization. Do they need to monitor kidney function while they are treating this problem? What's the likelihood of long term bladder problems and what can be done now to try to prevent permanent problems. Are there other ways that should be considered to deal with the obstruction and retention issue besides intermittent catheterization? If so, what are they and what are their risks and benefits? Why did hubby experience obstruction after LD Brach treatment? Did therapy unmask an unrecognized urinary problem? Have your docs ever dealt with this exact same problem before? If not, is there any other specialist they would recommend being consulted? It's important that you and your doctors build a trusting and open relationship to get through this successfully.

My little volume documentation plan is just something I thought up on the fly. It's just meant to help you see how well the treatment plan is working. Talk with your docs about it. They may shoot holes all through my theory.

Joe
Posted 6/7/2013 4:10 AM (GMT 0)
Joe,
I've been working today on a simple "chart" where we can record some of this info we are talking about. I made it pretty simple so as not to complicate things and easy for hubby to maintain and post to. Hopefully ...this will give us some ideas of what's really going on....and stats for the Drs when we see them. trying to remind him to drink more water....which he's not to good at doing right now.....but we will work on that. Hopefully ....keeping these numbers will allow us to see the full picture and have a better understanding of our journey while giving us the info we need to ask questions of our drs and make informed decisions . Knowledge is power!!
thanks for all your thoughts and suggestions!
Diane
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