I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

To pee or to poo! - incontinence

User
Posted 16 Feb 2018 at 16:08

Hi everyone. A new arrival to the fold.

My name is David, I'm 64 (a bit chubby) and have just been diagnosed with two lesions, both on the right side of the Prostate. One is 1.7cm and the other 5mm. I have a Gleason of 7 (4+3). There does not appear to be any metastasis so I am localised but since I have an arthritic knee I am having a bone scan to be sure. I am not overly emotive about the big 'C' word and am approaching the whole issue as just a serious illness that needs sorting. That said of course I am apprehensive and worried about making the right choice. After all, in the case of surgery you only get to make it once! 


My Urologist is heavily advising surgery over radio due to the fact that I had a history of Ulcerative Colitis from 1974 to 1996. I've been in full remission since but the thought is that by having radio there is a risk that I could reignite it permanently. During my time with the illness I managed it and don't have too many fears of it returning. Even the best efforts of my local curry house rarely upset me that way.


However my main concern is on the urinary incontinence front. I have a need to pee almost hourly in the mornings, often with some urgency and sometimes with occasional leakage (a single drop). I get better as the day goes on and at night only get up once with no urgency. My flow rate has always been good with little in the way of stop/starting. That said, post TP biopsy I note that the rate is a little slower but it's only been three weeks so I guess there might still be a bit of swelling.

The main thing I am concerned about is that if I am already suffering urgency and leakage prior to the surgery what are my chances of regaining good or improved control post operation. The reading on this forum is not encouraging and to be honest it seems almost a question of choosing between guaranteed permanent urinary incontinence from surgery or the risk of long term bowel problems from having Radio. The other side effects of Radio are not pleasant reading and I know that combined with Hormone Therapy it's going to be a long slog but it has its attractions.


I suppose my question is which method is likely to offer me the best chance of post treatment urinary control? Or is that simply a question that can't be answered due to individuality?

Your thoughts and experiences would be appreciated.


 Best Regards.

User
Posted 17 Feb 2018 at 18:39

On the good news: I'm a RT/HT guy, diagnosed 2004 still doing OK. All routine bowel tests clear. No incontinence. ED helped by Cialis. Check my profile.

Good luck

Ray

User
Posted 16 Feb 2018 at 17:50

Where did d you get the idea that surgery would lead to permanent urinary incontinence? Probably best to see both specialists before you make a final decision though - you could be lucky and get an oncologist with access to SpaceOar gel to protect your bowel.

You may find that you never look back from surgery though - my OH slept better, he had uninterrupted sleep for the first time in years, hesitancy was gone, frequency reduced ...

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Feb 2018 at 11:52

I agree; you need to get advice from both sides before you decide.

RT is particularly hard on the rectum where it neighbours the prostate, so maintaining that remission is a real issue.

Maybe contact your UC consultant too.

.
-- Andrew --
"I intend to live forever, or die trying" - Groucho Marx
Show Most Thanked Posts
User
Posted 16 Feb 2018 at 17:50

Where did d you get the idea that surgery would lead to permanent urinary incontinence? Probably best to see both specialists before you make a final decision though - you could be lucky and get an oncologist with access to SpaceOar gel to protect your bowel.

You may find that you never look back from surgery though - my OH slept better, he had uninterrupted sleep for the first time in years, hesitancy was gone, frequency reduced ...

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Feb 2018 at 11:52

I agree; you need to get advice from both sides before you decide.

RT is particularly hard on the rectum where it neighbours the prostate, so maintaining that remission is a real issue.

Maybe contact your UC consultant too.

.
-- Andrew --
"I intend to live forever, or die trying" - Groucho Marx
User
Posted 17 Feb 2018 at 12:19
Hi,
I've had Robotic surgery in 2015 & RT in 2017, with Pelvic floor exercise everyday I now have incontinence controlled, only get up once in the night for a pee & that depends on how much alcohol I consumed before bed. It is life changing but can be overcome with patience & perseverance , please read my profile.
Best of luck
James

Edited by member 17 Feb 2018 at 12:22  | Reason: Not specified

User
Posted 17 Feb 2018 at 17:59

Thanks everyone.


I guess the impression I get is that the more I read (especially here) the more people seem to be complaining of permanent urinary incontinence or complications from surgery. However I am not losing sight of the fact that the reason I am reading them is because they are more likely to be out of the ordinary. It seems easy to research all the bad things that can be associated with either method but less so when you're looking for people who say they've done well. Frankly I could do with meeting some people who can advocate either treatment from a positive point of view to get a balanced picture.


It's early days for me although this has been on the horizon for a while as I had a PSA of 7 in late 2015 rising to a stable 12 for the last year. The first consultant I saw conducted an MRI which came back clear but frankly his approach frightened me off. He seemed obsessed with me having a terminal condition and only by conducting every check his private practise could charge the NHS for would he then believe he was wrong. When it was suggested that I might just have BPH he openly sneered at me. When the history of colitis was mentioned (by my wife) he admitted he hadn't even read my notes! We left at that point.


I am now with a totally different team of Urologists who I am impressed with and I feel that I am getting the best approach and good treatment. They seem to be willing to work from the positive to the negative rather than the first consultant who just seemed to be a butcher and a very arrogant one at that.


I have a bone scan to do next week followed by a meeting with the consultant that would do the surgery and then I suspect in early March a meeting with the radiologist to discuss the alternative. Then I suppose it's decision time.......


If you have some good stories to tell of either treatment I would appreciate hearing them as well as the cautionary tales.


Thanks again.

Edited by member 17 Feb 2018 at 18:00  | Reason: Not specified

User
Posted 17 Feb 2018 at 18:39

On the good news: I'm a RT/HT guy, diagnosed 2004 still doing OK. All routine bowel tests clear. No incontinence. ED helped by Cialis. Check my profile.

Good luck

Ray

User
Posted 17 Feb 2018 at 18:46
Hi there,

These are the best stats I have seen on urine incontence after surgery as they are real time

https://www.birminghamprostateclinic.co.uk/prostate/live-results/continence-12-month-results/

That's a lot of guys dry 12 months after the surgery. Clearly there is a risk though.

They have real time ED stats too which may help.

Regards

Clare
User
Posted 21 Feb 2018 at 09:11

Well my biopsy results came back and read a little worse than I expected. I had hoped from the MRI that everything was localised in two lesion on the right lobe.

It reads like this; 


The returns showed a Gleason 7 4+3 Adenocarcinoma which was present in 30% of the biopsies taken of the right apex abnormal area, and in three of the seven taken in this area. There was also Gleason 4+3 in one out of six biopsies taken from the left side of the peripheral prostate. 


I still have a bone scan to do next week to confirm staging but assuming that's OK then I presume I'm looking at a tumour that's ready to go global before long. Therefore I am beginning to think that my chances are best heading for surgery but I would appreciate hearing other peoples views.


If radio is still an option has anyone any knowledge of Sterotactic RT in particular Cyberknife? 


Thanks.


 

User
Posted 21 Feb 2018 at 13:01

That looks like a pretty good lab report to me and seems your MRI was reliable. What makes you think it is ready to go global?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Feb 2018 at 14:20

Hi David,

My diagnosis was near identical to yours, PSA 9.6, Gleason 4+3 and 3+4=7, T2 bilateral.

The urologist recommended RT/HT route, I baulked at the possible long term side effects, small risk of later bowel problems, but he said there would be fewer side effects with RT/HT. He pointed out that it would be him doing the op. if I went for RP, so thought this a good recommendation.

The 2 treatment paths have similar outcomes. I’m divorced / single and I wonder if this was a factor in the recommendation, it seems many who go down the RP route have supportive partners.

I had 4 weeks RT, 6 months on HT, Zoladex. 4 months post treatment my PSA was >0.01
Was hit by the HT side effects but all treatments have their negatives.

One forum member has recently posted his experience of Cyberknife, Pale Rider. You can find his post on the member / search function.

Good luck, G

User
Posted 22 Feb 2018 at 09:25

Lyn, I thought that the fact that one core had been found near the periphery on the left made things a little more urgent. From your comment I presume that it's not imminent that metastases will occur soon. I am still very new to studying all this so you'll have to pardon my naivety.


As things are shaping up I am looking at HT/RT with the knowledge that as a retired airline pilot I have already received between 2 to 3mSv per year for 35 years through cosmic radiation. My past employer sent my record through yesterday. I presume that doesn't dissipate, or does it? 


As mentioned in my fist post my history with Colitis means my Urologist is pushing me heavily towards RP but since I have been in remission for as long as I had the illness I feel it's worth the gamble. I know the HT/RT route will be long and arduous with many unpleasant side effects but hopefully I will come out intact and hopefully as continent as I am now, which isn't great by day but I manage.


Surgery frankly frightens me from the point of knowing that I have a single traumatic physical event to overcome that (as I read here) carries the risk of complications, infections and a long uphill battle with incontinence. The good health is probably more quickly achieved but as I am not overly fit, and due to an arthritic knee not able to do the exercise I enjoy (dog walking and cycling) I feel my chances of being in the small per cent of men who never really regain control of their bladder are high. I can see that RP on paper offers all the sensible benefits in my case but I just can't warm to it. I feel that I would be doing it to please my medical team, that it would be the worst mistake of my life and that I would find it hard to cope with mentally if it went wrong.


I know I sound like I've made my mind up but I am still looking at things as logically as possible. I know RP is the more sensible route but my heart is hoping the HT/RT will get me where I want to be just as well.


Sadly the nurse assigned to me only works two days a week and the phone handset in her office doesn't work very well so I can't understand her on the phone. Apart from email I have no other support than here so thanks to you all for your kindness in replying to my posts. I have a bone scan on Monday and I am meeting the surgeon on Tuesday so hopefully I will have more information to work on then.


 


 




 


Edited by member 22 Feb 2018 at 09:32  | Reason: Not specified

User
Posted 22 Feb 2018 at 10:56

Peripheral zone doesn't mean it is near the periphery of the gland. The peripheral zone is the area furthest away from the bladder and is the most common site for prostate cancer

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 Feb 2018 at 10:58

PS The uro will know whether it is getting near the edge by the position of cancer cells in each positive core

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Mar 2018 at 15:47

Since I last posted I'm pleased to say that my bone scan came back clear. Sadly I am still waiting to see both the surgeon and oncologist in order to decide on treatment.

Everything I read about surgery, from initial recovery through to long term chances of biochemical failure make me lean towards taking my chances with HT/RT. Neither are pleasant, neither one is better at providing a cure than the other, but I note that both on this forum and others the number of posts related to complications, rectifications and general dissatisfaction of outcome emanate from those who had surgery over HT/RT. Put simply I've lost count of the posts that effectively said 'I wish I hadn't had surgery' whilst not really seeing any that have said the same for radio.


Does anyone have a different viewpoint? 


 

User
Posted 08 Mar 2018 at 17:34

Yup.

You can click on my name to read my profile.

In a nutshell: diagnosed after a routine DRE check at age 55, zero visible or physical symptoms. Fair to say from the start I was blinkered about wanting it OUT OUT OUT.

MRI showed PCa contained well within the gland*. Beware the asterisk!

Local NHST did not offer RRP. Asked for, got referral to Royal Reading Robot. RRP MAY 2013. My local NHST surgeon who could only offer open surgery came to observe my op on his day off.

RRP Surgeon explained to me that the POTENTIAL consequences of RRP were: 1 out of about 400 die on the table. I did ask if I was his 400 th? I was not, he'd not lost anyone on the table. Not specified but much lower % chance I might suffer bowel and or urinary incontinence. A chance I might end with permanent ED.

My stated priority to him was

1. save my life

2. take out whatever you need to or want to to save my life, don't take a chance in the mistaken belief that you are doing me a favour by leaving any race or shred of cancer in me. I was that blunt

3. then worry about saving bowel control

4. then worry about saving urinary control

4. then worry about saving EF

If I was constantly poohing or weeeing and never erect I wanted to be alive to moan about it.

So, RRP in May 2013 at The Royal Reading, pelvic floor exercises were a complete waste of time for me, just wore me out. NB hey may work for some folks? I was dry day and night after about 6 months. EF resumed after a couple of months. I can drink a lot, still have urinary control. I can drink lots and lots without affecting EF. My GP explained that the more I drink the more mentally relaxed I become, the less I am either consciously or subconsciously thinking about EF, so EF happens. Can EF in the morning without needing a wee first. I am fortunate. 5 years ago other treatment options offered similar potential outcomes with in potentially fewer side affects.

It will be 5 years down the line for me in May, my PSAs are all coming back at -0.01.

You've read about people that made a treatment choice, and later regretted it.

This is entirely understandable, but it's irrational. We all make our preferred decision, our best choice for us on the information and evidence we have at that time. It's like buying a blue car that and when that breaks down, wishing you'd bought the red one.

I made a promise to myself that I would choose robotic surgery after I had looked at other treatments! Actually, I didn't. I wanted it OUT. But, I would never regret my choice. I would make the best choice for me with the information I had at that time and I would go for it.

In my view, I am cured of that Prostate Cancer. I love life. I live life. Another Cancer may get me later? A bus may knock me down? I'm a tad overweight, enjoy a drink, a heart attack may get me one day. Cest la vie.

In my view, the most important fact to consider is that whatever treatment choice YOU UNDERGO, it is only YOU that will Have to live with the consequences.

RRP worked for me. If you elect to go that route, it may not work for you? Or it may, work even better than me, or not?

It's a horrid choice to have to make. All we can do is make the best choice for US on the information we have at the time we make that choice.

If you want to chat, PM me, but NOTE that I will not persuade you either way. It is, has to be, your choice.

All the best

Dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 08 Mar 2018 at 19:12

Thank you for your very illuminating reply Dave. As you said, it's a foul choice either way but one that can only be made by the person undergoing the journey. 


I do see all the advantages of surgery, but the one thing I am aware of is that the rate of biochemical failure (recurrence) is roughly equal either way (actually surgery is slightly better) thus I am only approaching this issue as a potential purchaser of ten years of life and nothing more. Perhaps I'm like your car buyer....


Surgery to me is asking someone to take your pound coin and try to get the cuddly toy out of one of those machines with the robotic clamp that you see in motorway service stations and arcades. Whilst the surgeon may well manage it most days, we all have bad ones. Even if successful there is no way to know if the capsule has leaked or the cancer spread outside. At the moment we are now four months down the road since my MRI and two since the biopsy so who can say what the current state of my prostate is for sure.

I see HT/RT as a long and slow road with many unpleasant side effects, but the simple science of starving the cells first before toasting them seems to offer the benefit of a two pronged attack that should address all the cells, localised and those in the positive margin. I am particularly interested to know if SBRT will offer any recognisable benefits over EB or IMRT but will have to wait for my oncologists opinion before deciding if self funding something like Cyberknife is worth it.

As for the future I doubt I will ever stop looking over my shoulder at the PSA scores and so it matters little to me if I have to wait two years to know if RT worked. I will have made my choice, taken the journey and can only hope for the best. Time to move on and enjoy retirement whilst I can.


The 'get it out' complex, along with a phobia about 'The big C' is not something I am suffering from. I want to approach the problem as logically and scientifically as I can. I have a serious illness that needs addressing. If some of the surveys are to be believed (an I'm particularly interested in the ProtecT UK one) whatever I do, including nothing, I will still probably be here in ten years. Whatever treatment I choose is hopefully going to put a positive factor into achieving a few more years after that.

Edited by member 08 Mar 2018 at 19:16  | Reason: Not specified

User
Posted 08 Mar 2018 at 20:50

I like your thinking Boeing. My OH is one of those who rushed into surgery without fully understanding the implications and then regretted it later. We can’t know for sure that he would have made a different decision if he had his time again but knowing that he was going to end up with HT/RT anyway meant that the side effects of the RP could have been avoided.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Mar 2018 at 21:45
Thank you Lyn. Your opinion is highly valued as you've obviously researched this whole subject very extensively.

I am not pitting Dr Google against the professionals, and in no way would I profess to equal them, but if after all the research I've done I can find a rational and logical way through the maze of confusion in order to find the choice that's right for me then it will have been worth it.
User
Posted 08 Mar 2018 at 22:16

Don’t take my post as anything more than a “this is what happened in our house” - you would have to set it against my father in law who refused all treatment because he valued his sex life and only survived 4 years, and my dad who had one of the first nerve sparing RPs as a guinea pig, had 13 years of remission and is even now declining any further treatment on the basis that he quite fancies his chances. I am certainly not persuading you for or against - simply applauding your ability to not panic and rush into anything.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Mar 2018 at 22:59

Take your best chance Boeingboy,

I too admire your mental approach.

I am neither expert nor authority, not even well up on current treatment. I am 5 years out of date. Thankfully

What if:
Many years ago, I chose to cross a road. It seemed to me on the evidence I had at that time, road seemed clear no traffic, apparently no buses, this was apparently and seemingly the best choice for me.
The road looked to be clear.
I crossed the road.
Oops, the road was not as clear as it appeared to be, on the scans.
I was struck down by a bus that was not supposed to be there, was not seen by me or anyone else, was not on the scan.
At the time I chose to cross that road I did not know that a bus was going to strike me down.
Had I known at the time I made that choice that a bus was going to strike me down when I crossed that road at that time, would I have made the same decision?

Looking back, my only regret, the only thing I would change, is that I didn't get my PCa detected sooner.

My preferred choice to go for surgery gave me doubt, fear, worry, anxiety, a drink problem? Well, I may have that anyway? And a timetable of side effects and consequences and fears that I may never end or overcome.

Surgery hurt me? My experience was actually tolerable, might be not so for you?

Whatever you decide, I wish you well.

dave


Do all you can to help yourself, then make the best of your time. :-)
User
Posted 08 Mar 2018 at 23:18

"- so it matters little to me if I have to wait two years to know if RT worked". How will you know then?

(RT 2005, HT 2004 - 2008) Unsure what you mean by worked? If you mean cure then no Consultant, CNS, or GP as ever said that to me.and I've done very well to-date

Ray


Edited by member 08 Mar 2018 at 23:25  | Reason: Not specified

User
Posted 09 Mar 2018 at 08:52

Ray. My comment about being cured in two years simply relates to hopefully having hit the low nadir in PSA scores by then. I fully accept that there is no 'cure', only remission. As far as surgery goes then I would still be nagging my GP to test my PSA every few months so it matters little to me which treatment I receive in that respect. One of the selling points of surgery is that if it all comes out in one go you know you've been 'cured' very quickly. You don't get that with HT/RT but as I am always going to be looking over my shoulder it doesn't worry me too much.

User
Posted 09 Mar 2018 at 10:14

David,
My comments are not intended to influence you on treatment or not or if so which option. My concern is you make an informed choice based on facts rather than peoples experiences. I've been here plus 12 years and have read sadly a fare few times failed treatment posts from both RT and RP. RT, a low nadir doesn't prove all the cancer cells have been disposed of, neither does surgery gaurantee all cancer cells have been chucked in the bucket.

As regards nadir, if HT is also given then the nadir point is not so straightforward as RT alone. From my referral a few months back I was informed they are taking it to be Sep 2009. Which is 4 years after RT ended and 12 months after HT ended.

Ray

User
Posted 19 Mar 2018 at 08:54

Has anyone got any experience of the use of rectal spacers used in the application of RT? I can find plenty of information on them in the States but can't seem to find any mention of them being used here.


I am particularly interested in the self degrading gels applied at the same time as the Fiducial markers, although I believe other methods exist.


 

User
Posted 19 Mar 2018 at 11:09

I have answered this on your other thread - search for SpaceOar

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Mar 2018 at 16:53

Thanks Lyn. I could not get the new thread to appear once started so posted here. I did pick up your answer Thanks.

Anyway, the journey started today following my meeting with the Oncologist. I have taken my first Bicalutamide and await the joys of Zoladex in two weeks. 

I have an instruction for my GP to administer either Zoladex. Prostap or Decapeptyl. Does anyone have an opinion of one being better than the other for side effects?


As for RT I have been offered a month of 3D-IGRT with a dose of SD Brachy to back it up, however I will now research whether to finance Cyberknife along with SpaceOAR.


Let the hot flushes commence...... ;-)

Edited by member 21 Mar 2018 at 13:49  | Reason: Not specified

 
Forum Jump  
©2018 Prostate Cancer UK