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timbaker

SUGERY FOR URINARY RETENTION

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timbaker

I've been living with metastatic prostate cancer for nearly five years now,  have had early chemo and ongoing hormone therapy. Lately, I have been experiencing increasing difficulty emptying my bladder, getting up frequently during the night and sometimes unsure if I'm going to be able to urinate at all, having to strain to achieve even short spurts.  My urologist has recommended surgery to open up the uretha, suspecting the cancer has begun to block it. This sounds like a fairly unpleasant procedure, involving a couple of nights in hospital, a month of taking it easy, and the risk of incontinence and bleeding. He fears left untreated I may be unable to urinate at all which quickly becomes  a medical emergency. I have recently gone back on Zoladex after taking a break due to extremely unpleasant side effects and trying Xtandi alone for the past 18 months,  but my PSA had begun to rise over the past few months (13, 17, 20, 23, 33 over past few tests) and the latest PSMA PET scan has shown some slight progression (for the first time since I began treatment five years ago) with a new, small metastasise in the left pubic bone. This is all a bit overwhelming and feels like the beginning of a downward slide after enjoying good quality of life and stable scans and regression of disease since treatment began. My oncologist is waiting to see if the return to Zoladex is effective and how I tolerate the side effects, but is recommending more chemo, with Cabazitaxel. We had agreed a global pandemic was not a great time to resume chemo and be immuno-compromised, hence the return to Zoladex, but I feel like none of my options here are great. I am wondering if anyone else has had this surgery and how they fared, whether their might be other options to treat the urinary retention and, longer term, what other treatment options might extend life without drastically reducing quality of life. Thanks. 

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alanbarlee

G'day Tim,

Can you elaborate a bit on your primary treatment (if any), your Grade Group / Gleason Score at the time, the rational for the early chemo, and the extent of your mets when diagnosed and at your recent PSMA-PET?

Hopefully we can then throw in some relevant  points to chat over with your medical team.

Thanks,

Alan 

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timbaker

Sure, so as I say I had early chemo (docetaxel) and concurrent hormone therapy with Zoladex when I was first diagnosed five years ago, the rational for early chemo being that I was deemed "chemo-fit" at the tender age of 50 and studies had shown the combined treatment significantly extended survival times. My PSA was 130 when diagnosed, gleason score 9, and PSA dropped to a nadir of 0.3 after six cycles of chemo and stayed relatively low with a few fluctuations over the subsequent 3.5 years, even with a few intermittent breaks from Zoladex, two six months periods on cosudex alone because I found the side effects of Zoladex so distressing (mood swings, suicidal ideation). The past 18 months on Xtandi alone has been great in terms of quality of life but it is clearly no longer doing the job. I had mets in right femur and left seventh rib when diagnosed, right femur cleared up completely post-chemo and have had stable scans with just one small met on rib since. Latest scan shows new met in pubic bone and existing met in rib.  Key issues for me are, whether there's an alternative to the surgery to alleviate urinary retention as the prospect of incontinence is pretty off putting, and what my other treatment options beyond Zoladex and more chemo might be. I doubt I'll tolerate zoladex much better in the long term than last time even if its still effective and if I go the chemo route  I'm unclear what my treatment options are on the other side of chemo. It feels like my situation has deteriorated very quickly as I've otherwise been in excellent health, surfing and still working and enjoying life to the full, so this has hit me pretty hard. Urologist suggested palliative radiation might help with alleviating urinary retention. I'd be interested if others have had this surgery and how they fared, and if there are any other treatment options both for urinary retention and ongoing cancer treatment I could discuss with my doctors.

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timbaker

To answer your initial question, primary treatment at the moment is zoladex and xtandi, though I'm unsure if there'smuch point continuing with Xtandi given it no longer appears to be working, but see my oncologist Monday to discuss. 

 

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PeterA

Sorry, Tim, to read that you are going through that urinary experience, and the ADT decisions.

I'm 3 years post Radical Prostatectomy and now experiencing  delayed and intermittent weak flows.

I had a telecall a few weeks ago with the Urologist who performed the RP.

He said that a day procedure would be required involving dilating the urethra via a catheter in the penis which would also open the blockage, which he described as due, not to the cancer blocking it, but to closing of scar tissue in the urethra at a point where a cut was made at the time of the RP.

Because of lockdown, he booked an appointment for October, but I now want an earlier appointment.

Because of your description of the procedure, I will try and ask for further explanation of my proposed procedure.

Incidentally, I haven't yet started on ADT or Chemo and am now stating to consider those options. I'm fearful of the side effects and so am delaying my decision.

I look forward to responses of others to your post. Thanks. PeterA

 

 

 

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Chask

I have been suffering from a blocked urethra for 5 years now.  Exactly how it became blocked, or even why it is blocked has not been determined.  One urologist suggested that it was the result of badly targeted radiation, while another performed a cystoscopy (before it was totally blocked) and found a loose staple which he extracted.  It might even be due to scar tissue from the prostatectomy - dunno!  So whether it is due to bad surgery or radiation, I don’t know, but in a strange way, I consider it preferable to the massive incontinence I had at one time.  It has been a complex process.

 

However, the point is, I have lived with this for 5 years and I urinate via a SupraPubic Catheter (SPC), with a ‘flip-flo’ valve connected. I will not have a leg bag.  The catheter enters the bladder just below the belly button and just above the pubic bone.  The other end of the catheter with the valve just tucks into my undies, so when I need to empty the bladder, I just pull out the catheter insted of ‘Percy’.  The SPC is not perfect, at times uncomfortable, but totally manageable for a virtually normal life.  So much so that I have resisted further cystoscopies in case that returned me to incontinence.  
 

So if you really are concerned about the consequences of penile surgery (I would be) then the SPC is a possible solution.

 

Good luck, Chas

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alanbarlee

Tim - so you had no surgery or radiation after your positive biopsy? Gleason? Other mets? (This info is relevant to your urinary issue!)

Cheers,

Alan

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timbaker

HI Alan, Not sure if you are seeing my replies. Gleeson score 9. No surgery, I thought this was a given when metastatic. Mets in right femur and left seventh rib and now left pubic bone. Had stereotactic radiation on the spot on my rib but seemed to have no effect. Have had cyberknife radiation recommended to me but as far as I know is only available in Perth so not accessible at the moment, but perhaps not too far off. 

 

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Patrick Turner
4 hours ago, timbaker said:

but my PSA had begun to rise over the past few months (13, 17, 20, 23, 33 over past few tests) and the latest PSMA PET scan has shown some slight progression

But do the PsMa Ga68 scans show high PsMa expression? If so, I'd immediately try to get Lu177, and a few shots will likely reduce all your Pca at various places, and then you might know if Pca is blocking your plumbing. 

I also have some problem peeing at 4am sometimes, and my PG was left in after docs decided they could bot remove it in 2009 at age 62, Gleason 9 and Psa only 6. I had a lot of EBRT and salvation IMRT and I guess my PG would look like a real mess if anyone looked at it. But plumbing does work, and surgery for me is unwise because of possible bleeding.

But to ease the problem of blocked plumbing, I take one tamulosin tablet daily, and I soon know if I have forgotten to take the pill after dinner. The tamulosin reduces the swollen PG that is worst at night after lying down, but in daytime I am fine, but average volume expelled in 250ml. Its a long way from being able to hold a litre in when I was 25.

Dilation of urethra by means of inserting a balloon type of gadget to stretch the tubing to make dia bigger is fraught with risk of having something rupture. But 25 years ago, I had an old girl friend who had terrible trouble with stomach pipes and sphincters controlling food flow into stomach and out, and her weight was 40Kg when doctors finally decided she really needed some help. But she had no cancers, so tissues were basically healthy, and she benefited from stretching all her blockages. She also suffered adhesions of various parts of her internals to others, and so you are not alone in having plumbing troubles.

One solution for blocked urethra or ureters is to have super-pubic catheter fitted from front of bladder above pubic bone to allow pee to gather in a plastic bag. Maybe 50,000 Australians wear bags for pee or solids or both. Of course having a SPC means there's risk of infections but its not such a bad idea to get you over a bad time until you could get an operation, if docs were sure it would work.

I was once in a loo in Central railway station in Sydney, slowly passing some pee, and a bloke pulled up further along the trough, and for about 10 seconds he pissed like a horse, and I guess he was emptying his bag, by opening the tap on bag pipe and squeezing squeezing the bag under a shirt with his arm.

I also knew a man who was diagnosed with Pca, and would not have RP, RT, or ADT et all, and he had a urologist bring his two ureters together to what is called a stoma at lower side of abdomen so a bag could be fitted and he's been just fine. PG and bladder was all removed, so he could never function sexually, but didn't have ADT, so he had benefits of testosterone. His wife stayed with him.

He beat the problem of Pca. 

Take care, and try to think of ALL options available...

Patrick Turner. 

 

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alanbarlee

OK Tim - got it! Thanks for all the detailed background.

 

A few thoughts on treatment of the mets:

 

Cyberknife is also available in Sydney (not sure which hospital), and seems to be one of the best technical hardware options for stereotactic radiation (SABR) - which .

 

A bit of a long shot on systemic ADT treatment, but you could check out Firmagon (degaralix) as an  ADT agent that acts a little differently to Zoladex. - and possibly in conjunction with Xtandi, which is a more effective anti-androgen than Cosudex.

 

Cabazitaxel (Jevtana) sounds like a good proposal from your oncologist. This chemo option has a different but generally well-tolerated side effect profile to docetaxel (Taxotere) and is considered to be an effective third line treatment. 

 

Another long shot might be a gene test for BRCA1/2 and if positive, a PARP inhibitor (Lynparza).

 

On the urinary issue:

 

A multi-parametric MRI and/or a biopsy of your prostate might be useful, to check out the possibility that emerging tumour activity around the urethra might in fact be causing the problem, years after starting systemic treatment. (Primary radiation treatment to the prostate - like EBRT or IMRT - can sometimes show delayed physical symptoms - but you haven't indicated that you ever had such treatment).

 

You might explore with your urologist the pros and cons of a radical prostatectomy, even at this late stage.There is the possibility of reducing tumour burden and more mets if there is recurrent cancer in there - and surgery would likely also remove the obstruction issue, albeit with a small risk of persistent incontinence (i.e.lasting more than 6-12 months).  

 

The other guys will have more experience to offer on urinary restriction - but it might be worth having a chat with another urologist -and possibly a radiation oncologist - for a second opinion. I would think that the very last thing you need is a total urinary obstruction.

 

Best wishes,

 

Alan

 

 

 

 

 

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JPB

 Hello Alan

Had to join up to respond to your call, just sooner than later.

Briefly, I'm 72 yo and diagnosed following a TURP in late 1995 then Radial in 2006

Reoccurrence at Bladder neck 2014, with Hormone Therapy and 39 sessions of

radiation now in to Chemo session 5 with Carboplatin and Hormone continuing.

The one thing that has made this journey easier was the fitting of an AUS (artificial

urinary sphincter) in July 2019, this has eliminated all Catheters as well as self

catheterisation.

Given where you are, this option may be of assistance.

Please give me a call on 0408 193 225 if you would like to discuss this advice in

greater detail?

Cheers

John Byrne

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timbaker

Thanks all for your valuable feedback, some great information here. I get an ultrasound and see my oncologist Monday and then see the urologist Tuesday to settle on a treatment plan and will let you know how I go. Having processed the latest information I'm feeling a lot better this morning, went surfing with my son, still feeling fit and well, and if there's a period of more intense treatment coming up I'm ready for it. Take care. 

 

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Russ Harwood

Hi Tim,

Have read your story and the many useful suggestions that have been made.

I will just deal with urinary retention.

I was diagnosed 5 years ago (at 68) with advanced Pca, and had the usual treatment of docetaxal and Zoladex. PSA went from 88 to ≤2.  No surgery. Some mets.

My average urinary volume passed was 220ml, day and night, due to a bladder compromised by the tumour.

Gradually over time I found my flow rate slowing due to enlargement of my prostate around the urethra.

Discussed issue with urologist earlier this year. Usual treatment of a TURP was recommended. In fact, a 'channel groove' TURP was performed.

Results. Some bleeding for a few days (expected). Also painful to urinate (expected).

General recovery was quite fast.

4 months later,  flow rate has improved and average volume passed is 350 ml during day, 400 ml at night ( when supine). There were some minor incontinence issues (urgency), but urologist said bladder would 'remodel' over time, and issue has now 99% disappeared. So incontinence is not necessarily permanent.

Suggest you look at YouTube videos on TURP surgery for further background info.

 

Additionally, on further treatment options - don't forget to discuss available Clinical Trials with your oncologist, ALL along the journey. My oncologist who runs clinical trials likens it to a frog jumping from one lilypad to another, (when regular options start looking limited), and I think it's a way of assisting cancer research by giving a little back.

 

Am currently on a clinical trial (immunotherapy based) and PSA has dropped from 18 to 12 after 2 treatments.

 

Wishing you well, Tim

 

Russ Harwood.

 

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