Retaining so much urine

[Eternity6]

my husband has been retaining 3 litres of urine for the last 6 days and feeling so nauseous he has to self catheterise , morning noon night, and each time it’s one litre at each go, in between this he’s still going to urinate normal flow every hour, through day and night, to be honest he’s really worried, transperineal biopsy due next Tuesday morning, it can’t come quick enough, psa was 6.1 but that was 2 weeks ago and is rising quite quickly since last examination few months ago, he’s a 59 year old man, Anyone know anything about retaining urine to this degree it sounds such a vast amount, and is exhausting! Surely there must be a kidney problem for this to be happening, as well as enlarged prostrate, Any replies welcome

[Tall_Allen]

It takes time for Proscar or Avodart to work. It sounds like he needs a TURP immediately.

[Eternity6 in reply to Tall_Allen]

Sorry should have said he’s on tamosulin but think it’s only 2 weeks

[Tall_Allen in reply to Eternity6]

That's good, but he also needs to shrink his prostate with Proscar or Avodart. How big is his prostate? Is his transition zone enlarged?

[Eternity6 in reply to Tall_Allen]

Hi all I know is he’s been told his prostrate is enlarged haven’t been told anything else was just told he’s having a transperineal biopsy next Tuesday and in the last couple weeks we’ve just found out that he’s retaining urine so it’s very early days for him, hopefully will be told much more after biopsy, the consultant did say the prostrate feels benign. But of course he can’t possibly know that yet as not had biopsy

[larry_dammit in reply to Tall_Allen]

Carful with the Avadart. It will give false readings on the PSA ,that’s the reason my urologist didn’t catch my cancer until it was stage 4

[Tall_Allen in reply to larry_dammit]

It cuts PSA due to BPH but doesn't affect PSA due to PCA. For men with BPH, it reduces PSA by about half. So it actually makes PSA a better indicator of prostate cancer. If your PSA climbs while taking it, your PSA is not coming from BPH.

[Break60 in reply to Tall_Allen]

I thought just finasteride cut psa in half not avodart?

[Tall_Allen in reply to Break60]

They both do. Both are 5-alpha reductase inhibitors that prevent the conversion of testosterone to dihydrotestosterone (DHT), which is a more powerful androgen receptor activator. Avodart inhibits two enzymes, finasteride inhibits one.

[larry_dammit in reply to Tall_Allen]

All I know is I was seeing my urologist every 6 months for years, by the time my PSA was rising I already had stage 4 cancer. The Avadart had covered the rise and it was to late. Doctor was dumbfounded about it.

[tango65]

You could request they insert a Foley catheter until he has the biopsy and his situation is re evaluated by the urologists.

[Eternity6 in reply to tango65]

Yes that’s true,

[Bethpage]

My husband's prostate was just over 125 gr at the time of his last (11th and negative) biopsy in 2014. He had been on Rapaflo and was trying to decide between TURP or simple prostatectomy. Since 2 TURPs would have been necessary, the local uros decided that a simple prostatectomy was the better option. That last biopsy caused swelling that put him on a foley for 4 months prior to the simple. He did okay with the foley which was certainly better than the unbearable pain caused by urine retention. The pathology after the simple revealed a tumor that had been hiding in the huge prostate.

[Rogersw in reply to Bethpage]

Sound like he needs a Foley catheter with a tap now whilst the medics are sorting out what to do (turps.?.?)

[Eternity6 in reply to Rogersw]

I’ve ring our local drs up this morning, he is awaiting a call back from them sometime today, but this is to do with him being a diabetic type 2 the nurse at the hosp seems to think that he should be seen by diabetic dr, to get a check he’s falling very nauseous since the litres of water he’s retaining daily plus exhausted working and self Cath three times day, because it’s very early days and biopsy hasn’t been done yet, it’s being done in 4 days , we haven’t got really any answers to much apart from the mri showed an 84cc gland with a PIRADS-4 lesion in the left lobe that measures 14mm ( he hasn’t been explained what this means) and that he’s been put in for a transperineal biopsy under local

[Eternity6 in reply to Bethpage]

Oh really a tumour! How is he doing now

[Bethpage]

A well-regarded surgeon in Celebration, FL, did the simple in 2014 without having confirmed the diagnosis of a small FL town uro that a surgery - or even surgery in general - would be the appropriate treatment. He should have ordered his own 3Tmp MRI prior to performing the simple, but did not. PSA rose after 18 months, so the surgeon then then ordered the 3Tmp MRI in anticipation of a salvage surgery (now we know never a good idea). The MRI and biopsy found 1 core of 4 positive, but the ensuing salvage (2017) was completely negative at pathology. After another (approximate) year, the PSA having bounced around but finally reached 1.0, the surgeon sent my husband for an Axumin ( fall of 2018). It reavealed nothing, so I got my husband into Stanford's phase II for the F-18 DCFPyL (Pylarify-December of 2018). Pylarify found the BCR in the right prostate bed along the path where the seminal vesicles had been removed during the salvage surgery. Husband started 2.5 years of Casodex (because of confirmed cognitive impairment) and underwent 39 RT to the prostate bed in summer of 2019. Casodex ended in September of 2021. He's undetectable since then, early days yet, but developed CLL as a result of the sensitive scans and 39 RT.

[middlejoel in reply to Bethpage]

Bethpage, can you expand a little bit about your statement regarding casodex and confirm cognitive impairment. Why casodex and why limited to 2.5 years.

[Bethpage in reply to middlejoel]

Sure, middlejoel. My husband has mild but progressive cognitive impairment - medically confirmed. The decline started in his early 60s, a good 15 years prior to diagnosis of PCa. When we knew he had BCR after a simple prostatectomy and a salvage, ADT (Lupron) was recommended for 2 years + 39 RT to the prostate bed. He was in his mid 70s, job and life circumstances dictated not to risk the additional cognitive impairment that can be a typical SE of Lupron et al. I posted in this group asking about any possible alternative (because of the cognitive issue) to Lupron. One very kind + most knowledgeable member suggested that at his age, physical health (excellent) and the apparent lack of aggressiveness of his cancer, "he might get away with 50 mg casodex + 10 mg tamoxifen." I did some additional reading, then we brought that option up to two MOs and two ROs, all in Florida. All agreed casodex + tamoxifen was a reasonable alternative. They recommended the treatment go for 2.5 years, 4-5 months prior to RT, through 2 months of RT, and 2 years beyond. You could look at the profile I did for my husband and my only post back in (I think) Feb. of 2018. His tumor was found in post-(simple)-prostatectomy pathology after 11 years (2003-2014) of negative biopsies. Gleason was 3+3. BCR was suspected in 2016/17, so an MRI-guided biopsy was done. That biopsy returned 1 positive core out of 4 taken, Gleason was upgraded to 3+4 (later upgraded by Kwon's team at Mayo RST to 4+3). Salvage surgery was done and was completely negative (and not effective in the least), thus the move to ADT + RT in 2019. He finished the 2.5 years of casodex + tamoxifen in September or October of 2021. He's undetectable since, but it's early days, too.

[larry_dammit]

Sounds familiar, urologist put me on self catheters a year ago or so because I couldn’t drain the bladder, I can go but still holds a bunch , feels like I have to go even after I go. Self catheter 4-5 times a day to be comfortable. Just part of the new normal for me.

[Eternity6 in reply to larry_dammit]

Are you in the U.K. Larry, I’ve not found anyone on here posting from U.K., everyone seems to be from the United States, not that it matters really, but I’m wondering if the procedures are a lot different in the states than the U.K. and also the meds , if you don’t mind me asking how much are you retaining each time you catheterise

[larry_dammit]

I quit measuring but around 16 ounces at a time. Sometimes more. From the USA

[Eternity6 in reply to larry_dammit]

Thank you,

[TJGuy]

A man I know needed A TURP and they found he had urine backup . That backed up urine caused a kidney to fail.

They told him had it gone on a few more weeks he would have died from it.

He had no idea anything was wrong, went to hospital for something unrelated when it was found.

[theamos in reply to TJGuy]

I ended up in the hospital having 3 liters drained. They told me I was lucky my bladder did not burst. They sent me home with a cath and I had surgery 2 weeks later.

[Eternity6 in reply to theamos]

I’m hoping my husband can have something done very soon that will help

[Eternity6]

Well my husband has spoken to our dr this morning and has to have urgent blood tests due to kidney imparement hoping to get into have them done on Monday as his kidneys have gone down such a lot so to say we are worried is understatement

[Hope422PC]

I cannot know your husband situation. However, my husband to have a urostomy due to radiation damage to his urethra. The surgery was long and recovery took quite a while. However, it has been such a wonderful relief for him to not have all that retained urine

[Eternity6 in reply to Hope422PC]

My husband is totally exhausted all the time every day it’s the same I’m having to keep records of it another day of 3litres retained urine, dr rang him yesterday to say his kidneys have gone down his number now is in 30.s urgent blood tests to be done, but we are having to wait to get a spot to get them done, our own drs won’t do them he has a four week wait there, which obv he can’t wait, he’s constipated now so nauseous 24/7 , I’m worried sick

[Hope422PC in reply to Eternity6]

Can he go to an emergency department?