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RARP Good News

User
Posted 08 Apr 2018 at 14:50
Hi All

Just for anyone having to choose treatment options and in the interests of reporting good news which may help others.

I had a Robotic Assisted Radical Prostatectomy in January last year. My DX was PT3a, Gleeson 3+4, PSA 6.4. More details on my profile.

It was a difficult decision but the MRI and Biopsy showed the tumor to be close to the edge on the left so surgery was advised with nerve sparing on the right only. Post op pathology report showed extracapsular extension but microscopic negative margins, so the way I see it the right decision and just in time.

Recovery has been fairly good with no pads required after about seven weeks. Urgency to pee and frequency has been a slight issue but manageable and recently much improved. ED also an issue which has really got me down at times but after a year or so there has been significant improvement, no where near back to normal but I am encouraged by recent improvements.

To me the really good news considering the PT3a DX is undetectable PSA so far with the latest check being just last week. I still fear a recurrence but move on positively.

Good luck to you all, especially those whos journeys are more difficult than mine so far. Also thanks to all who contribute on this site, the knowledge and experience you share is absalutely invaluable.

Good Luck to you all

Cheers

Bill

User
Posted 08 Apr 2018 at 14:50
Hi All

Just for anyone having to choose treatment options and in the interests of reporting good news which may help others.

I had a Robotic Assisted Radical Prostatectomy in January last year. My DX was PT3a, Gleeson 3+4, PSA 6.4. More details on my profile.

It was a difficult decision but the MRI and Biopsy showed the tumor to be close to the edge on the left so surgery was advised with nerve sparing on the right only. Post op pathology report showed extracapsular extension but microscopic negative margins, so the way I see it the right decision and just in time.

Recovery has been fairly good with no pads required after about seven weeks. Urgency to pee and frequency has been a slight issue but manageable and recently much improved. ED also an issue which has really got me down at times but after a year or so there has been significant improvement, no where near back to normal but I am encouraged by recent improvements.

To me the really good news considering the PT3a DX is undetectable PSA so far with the latest check being just last week. I still fear a recurrence but move on positively.

Good luck to you all, especially those whos journeys are more difficult than mine so far. Also thanks to all who contribute on this site, the knowledge and experience you share is absalutely invaluable.

Good Luck to you all

Cheers

Bill

User
Posted 26 Jul 2018 at 16:19

Great news Bill. I have my next blood test 1st August and am anxious I have to admit.

Hope things continue to go well for you.

 

Ian

Ido4

User
Posted 26 Jul 2018 at 17:44
Thanks Ian for the good wishes and all the best to you for your results on the 1st

Cheers

Bill

User
Posted 07 Aug 2018 at 21:53
The pellets work for fewer men but those that are successful seem to prefer it to a needle. No oral sex with pellets, I imagine.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Aug 2018 at 13:12

I have tried them all!!

Pellets I found more painful than jabs  and very unreliable. And you have to keep them in the fridge which can be embarrassing when you have house guests! 

Injections WORK but getting the dose right is tricky my URO said start with 15ml I used 10 and still had a 3 hour hard on. In the end I was on 2.5.

Agree with your doc re the pills but they made me feel miserable with dull aches and blurry vision.

Good news is 3 years on and I can get away with a cock ring Thanks again for that tip Chris!!

User
Posted 08 Aug 2018 at 13:35
Injections don’t work for everyone, there are some men for whom nothing works including the vacuum. John was okay with injections until his priapism and after that, they only worked about a third of the time. One of the things that is out of our control is how they have been stored at the pharmacy, whether they have been left in a hot delivery vehicle and so on; we definitely had a faulty batch where every single injection failed. Dad has always used the single chamber caverject which has to be stored in the fridge and then mixed just before injecting and doesn’t seem to be as sporadic as the dual chamber version but is of a much higher dose.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Jan 2019 at 08:23
PSA less than 0.01 I don't know why you are even thinking about a recurrence!!!

Forget about it until your next test and get practicing with your knackered willy.

If you did get an occurrence then waiting until PSA greater than 0.1 and scanning for it is certainly a strategy some people use. Unfortunately you will be lucky to spot anything at that level. Like I said forget about it it most likely won't happen even with a T3A.

User
Posted 15 Jan 2019 at 08:53

The problem Bill is that we imagine the 'what's left in the prostate bed' to be a little tumour that is tangible. In reality, it would be tiny clusters of cells which wouldn't usually be seen on scans, even the best ones, until much later when it might be too late for salvage RT. 

As francij says, you are worrying about something before it happens but if it did happen, bear in mind that John still had ED when he started salvage RT/HT and is now fully functioning; most of his improvement came in the year after RT finished.

Edited by member 15 Jan 2019 at 08:54  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Jan 2019 at 08:22

Great news with the indetectable PSA Bill.

Hope the other appointments help you out regarding flow and ED. 

Ian

Ido4

User
Posted 08 Feb 2019 at 06:21

Hi Chris thanks for the reply.
I had read your profile before and now refreshed my memory.
You have mentioned hemlock clips to me before and I have researched them.
Do you know if they can be seen on an ultrasound? how were yours found?
It seems your case is very rare. I asked my Uro if the op could cause incontinence and he said not normally because they would be dilating the bladder joint and not near the outer sphincter. But it sounds like that's what you had.

Bri's (Brianissac) profile doesn't mention refusing the op but I remember a post where some one actually on the slab turned it down when the risk of incontinence wad mentioned. I think that was him. I wander how he is getting on with flow now.

If the risk is significant I can manage as I am but I fear leaving it may make it more difficult or risky in the future.

Im sorry you had such bad luck with yours but it does seem you had particularly bad luck.

I need to have a more detailed chat with my Uro.

Thanks again

Cheers
Bill

Edited by member 08 Feb 2019 at 07:27  | Reason: Typo

User
Posted 08 Feb 2019 at 15:43

John, I love your quick wittedness πŸ˜„. I should have checked the spelling.

Chris

Thanks for the detailed reply. It seems both you and Flexi were OK continence wise after straight forward dilations and your problem got worse due to ongoing problems. Your information will help me ask the right questions at my next appointment which will be once infection has been ruled out as the cause. I have been on anti biotics for three days and I feel the infection has gone but the flow has not improved so I think I already know that answer.

Thanks again and all the best

Cheers

Bill

 

 

 

User
Posted 15 Aug 2019 at 21:24

Bill

Great news, if that flow has stabilized leave well alone, it might mean a little more time in the loo, but so be it. I found the stricture helped reduce my inconvenience. Perhaps some medication to reduce the night time visits ? Best wishes for the future.

Thanks Chris

User
Posted 16 Aug 2019 at 08:23

Great news Bill.

Ido4

User
Posted 23 Feb 2020 at 09:56

Yes I have used self catherisation and I have posted about it a few times. In my opinion it is an excellent solution. 

My PCa story started with retention one Saturday night. Solved with permanent catheter for a few weeks, but then moved to clean intermittent self catheterisation (Cisc). I was lucky that my retention turned out to be temporary (though PCa isn't).

Cisc is brilliant, yes a little uncomfortable at first but you get used to it. The best thing about it is, if the problem clears up you aren't left for months with a catheter in which you don't need. BTW a catheter is bad for the sex life. 

I have not had surgery and know nothing about surgical clips so I think you need to establish if cisc is safe for you. 

I now never need to do cisc, but I still do it once every six months to keep in practice. 

Whenever I travel in th UK I always take three or four disposable catheters with me, enough that if retention suddenly recurred I could get relief and then either get back home or get to a hospital but not be in an emergency situation. 

If travelling abroad I take enough for two per day, this wouldn't be enough if I actually needed them regularly or if retention started on day one of the holiday and didn't clear up, but for me retention has not been a problem for more than a year so I can take a chance.

If you need anymore details let me know. 

Dave

User
Posted 23 Feb 2020 at 15:22

Bill

I have had surgical clips, dilations and done ISD as opposed to ISC.

I had one surgical clip removed from the urethra with out any major issues. The other one was just floating in the bladder and came out with the help of a flexi and camera  Following ten plus dilations my continence did suffer but normally only for a short period of time, sometimes only a matter of days post twoc. On a couple of occasions I had dilation with an incision into the bladder neck  / scar tissue, continence probably took a little longer to recover. 

I did ISD to help keep the Urethra open, make sure you get a nice soft tip catheter and as you only want it to drain urine, smaller might be better.

Like Dave I would carry self catheterisation equipment with me just in case.

Thanks Chris

User
Posted 24 Feb 2020 at 16:53

Bill

That is still a very low PSA, unless you have been told something else I would consider that a good result.

Thanks Chris

User
Posted 24 Feb 2020 at 16:54
0.02 is undetectable - it would have to increase five fold for you to be considered to have a problem. It is worth checking whether they just missed off the < sign - sometimes the person reading the results doesn't understand its significance. But at 0.02 you could just have got out if bed on a different side that day, or had the test at a different time of day - PSA can fluctuate from morning to afternoon.

Biochemical recurrence is 0.2 or three successive rises over 0.1 - you are nowhere near worry street yet. Your PSA is currently about the same as a woman who has just had an orgasm. Try to enjoy having a PSA that many men can only dream of.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Feb 2020 at 17:16

All good at this level. It’s just noise and errors from the tests as so small. I’d not worry until you get to 0.1 should that be the case. Maybe have another in three months if the prescribed interval is longer for reassurance?

TG

User
Posted 13 Apr 2020 at 15:33
Thanks again Chris

"Not sure about your liquid intake regime, I would swap beer for vodka or gin.πŸ˜€."

Yes I don't mind either occasionally. Variety is the spice of life 🍷🍸πŸ₯ƒπŸ»

Just have to hang in there untill all this c19 stuff settles down. Others need help more than me right now.

Good luck with your own issues

Cheers

Bill

User
Posted 04 Jun 2020 at 17:30

Great PSA result Bill.  Hope all goes well for you next Monday.

Angex

User
Posted 11 Jun 2020 at 07:34

I went for the Specialized Power Expert saddle which I'm very happy with

User
Posted 18 Jun 2020 at 21:21

Bill

I used to do mine in the bath/shower, with one foot on the side of the bath. 18 is a bit brutal to start off with , I started with 12s and worked my way up. I got on well with tiemann tips, they are slightly angled so you can turn them to get round the bends. The spout end had an embossed line so you could tell which way the tip was facing. Remember to be gentle , it's easy to  damage your bits without feeling any pain.

Thanks Chris

User
Posted 18 Jun 2020 at 21:26

Hi Bill, I replied to this thread a few months back extolling the virtues of cisc. It really is such a life changer that it is worth persisting. Anyone else reading this post who is a little squeamish may find it goes in to more detail than you want, you certainly won't want to read it whilst you're having your tea. 

You are right about the need for three hands. I'll try and give you some tips.

My caths are 14f I think 18f would be a challenge.

I am using HiSlip plus. I assume yours are the same or similar.

Once you succeed your going to get a lot of urine flowing out of the cath if you get it wrong that could be going over your carpet or sofa so best do this in the bathroom.

I don't know whether you intend attaching a bag to the cath, I think we did for the demo but in practice I think you will just want to be able to use the cath on its own and hopefully get the urine down the toilet without having to manage the bags as well. 

Forget about aiming for the toilet, as any woman will tell you, us blokes have got a bad aim at the best of times, add in the complications of the cath and your aim is anywhere.

So put an old bowl in the bathroom washbasin this is about waist height which means you don't have to aim far when your standing right next to the sink and any which misses the bowl you're going to just have to turn the taps on and wash down the sink.

Next sit on the edge of the bath, I find this a bit better than sitting in a chair which is a bit too low, and easier than standing which is a bit too tiring if things are taking there time. 

Get the cath lubricated and out of its sachet. It has the bag end which is green (maybe different colour on an 18f) plastic, the bladder end, and in between a wrap around blue sleeve. Ideally you only want to touch the bits which aren't going in your body, the rest is slippery and will be going inside you so you don't want to contaminate it.

Sit with you thighs clamped together this should make your penis jut out a little. Left hand holding the bag end of cath with a finger or thumb blocking the cath exit hole, you'll only take that finger or thumb off when it's fully in and you're standing up and pointing straight at the bowl.

With your right hand fist gently around penis, but thumb and forefinger just above head of penis holding the blue plastic sleeve gently and guiding cath down eye of penis. You should manage about four or six inches with ease, then you have to get around the bend.

Left hand should keep applying pressure but not so much that the cath just flexs and bends. Right hand fist should be supporting penis to stop it bending, relax your thighs now, having them clamped will not help the next bit. If possible pull penis away from body a little that way you have to go around a 90degree bend rather than nearly 180degrees.

Now slide sleeve along catheter about half an inch further up than eye of penis keep as much of fist supporting penis as possible grip sleeve with thumb and forefinger as hard as possible so you can use them to push cath in the extra half inch, you have to be gripping hard enough that sleeve does not slip along cath. Repeat this process half an inch at a time.

Best tip I ever had was, if you feel resistance COUGH. I think it just relaxes the bladder muscle for a second.

You should be in in no time at all. The cath seems almost compelled to come out so don't let go of it or penis with either left or right hand. Stand up, go to sink, aim at the bowl remove thumb or finger, relief. 

You've not finished yet, stay at sink. Slowly start to remove cath, more urine will then come out from lower in your bladder, keep removing cath, just as the end of cath leaves the eye of penis a little more urine will come out. It's these silly unexpected bits of urine that could make a mess. 

Now tip bowl down toilet, tidy up, drink a load of beer so you can have another go. After practice you'll be able to do this sitting on a toilet seat and once cath is in, stand up, turn around and piss down toilet. I still spray a little over the toilet seat but that's just me marking my territory. 

 

Dave

User
Posted 19 Jun 2020 at 18:00

Bill

I used, lo fric and IQ, my favourite was a WyCathH2O, it has a very soft slightly angled tip.

Thanks Chris

User
Posted 19 Jun 2020 at 18:08
I needed to self catheterise for a little while, such a strange experience. I'm not too proud but the 1st time was being instructed by the urologist nurse it just felt wrong. Anyway not too much problem then but the next two times I tried at home on my own just could not do it at all probably equal split between brain thinking this isn't right, nervousness and plain fear. As mentioned I was absolutely drenched in sweat as well. However from 3rd night onwards no problem once I got it in my head, I think, that you have to push a bit when you get to the 'closed food's. Best of luck. I would say being as relaxed as possible, pretending its perfectly natural is good, in general of course.

Peter

User
Posted 19 Jun 2020 at 21:35

Doing with an empty bladder will take some of the stress away, mind you don't be surprised if you find your bladder wasn't as empty as you thought. I guess if the main purpose is dilation they may have gone for the size 18f to make a bigger impression, but I think a less ambitious 14f may have been a better idea.

It does feel weird and unnatural. But once you have PCa being prodded and poked becomes natural and you may as well be prodding and poking yourself rather than leave the doctors to do all the prodding and poking. 

Dave

User
Posted 22 Jun 2020 at 19:29

Bill

It will get easier, on a scope my hole looked quite big, but the consultant described it as a pin hole.

Remember be gentle.

Thanks Chris

User
Posted 24 Jun 2020 at 18:41

Bill

Gently advance the curved tip catheter into the urethra using a large amount of water-soluble lubricant. Maintain the catheter in the 12 o'clock position during passage (curved tip pointing up). 7. Insert the curved tip as per normal catheterizations, until urine return is obtained, then insert 2-3 inches more.

The above is from a makers web site.

I think this describes how I did mine and sounds the same as your interpretation. If you hold the penis up , the route to the bladder is a big U shape and the curve of the catheter follows around the curve of the Urethra.

 

Thanks Chris

 

User
Posted 24 Jun 2020 at 20:22

I have encountered these failures in logic amongst professionals before. I won't go in to all the tedious detail of a recent occurrence, all I will say is when I thought about it afterwards I thought "yes in a few circumstances what you have said is correct, and that's what you've been taught, but you're not seeing the bigger picture". However it's sometimes me who's not seen the picture. So you'll have to try each method and then post back and let us know. 

Dave

Show Most Thanked Posts
User
Posted 08 Apr 2018 at 18:05

Thanks for the update Bill

Always good to see a positive post

We can't control the winds - but we can adjust our sails
User
Posted 08 Apr 2018 at 18:50

Brilliant news Bill - keep on keeping well :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Apr 2018 at 07:06
Hi Bill

What great news and I am sure it will give encouragement to others in the earlier stages of their journey.

All the best,

Kevan

User
Posted 26 Jul 2018 at 14:40

Just been for another 4 month follow up and good news, PSA still <0.01 undetectable, phew I hate the anxiety increase as the day gets closer.

Maybe going to try envicorp for ED and seeing ED Nurse soon to discuss. Not sure whether to go for injection or pellets. Any thoughts anyone?
Uro insists high dose Viagra is still better than daily Cialis, but as discussed in other posts I'm not convinced and will also discuss with ED Nurse.if no luck there I may try getting it on line.

Urge and freaquancy is not to bad now and manageable. Thinking of trying Mirabetron just when travelling, but this will only work if it acts fairly quickly for me. Uro said it acts quickly for some and can take weeks for others.

All the best of luck to all of you and your carers especially those who's news has not been so good.

Cheers
Bill

Edited by member 15 Jan 2019 at 08:00  | Reason: Not specified

User
Posted 26 Jul 2018 at 16:19

Great news Bill. I have my next blood test 1st August and am anxious I have to admit.

Hope things continue to go well for you.

 

Ian

Ido4

User
Posted 26 Jul 2018 at 17:44
Thanks Ian for the good wishes and all the best to you for your results on the 1st

Cheers

Bill

User
Posted 07 Aug 2018 at 20:17
Anyone tried both Alprostadil pellets and injections. Any preference either way?

Cheers Bill

User
Posted 07 Aug 2018 at 21:53
The pellets work for fewer men but those that are successful seem to prefer it to a needle. No oral sex with pellets, I imagine.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Aug 2018 at 10:37

Originally Posted by: Online Community Member
No oral sex with pellets, I imagine.

πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

User
Posted 08 Aug 2018 at 13:12

I have tried them all!!

Pellets I found more painful than jabs  and very unreliable. And you have to keep them in the fridge which can be embarrassing when you have house guests! 

Injections WORK but getting the dose right is tricky my URO said start with 15ml I used 10 and still had a 3 hour hard on. In the end I was on 2.5.

Agree with your doc re the pills but they made me feel miserable with dull aches and blurry vision.

Good news is 3 years on and I can get away with a cock ring Thanks again for that tip Chris!!

User
Posted 08 Aug 2018 at 13:26

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
No oral sex with pellets, I imagine.

πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

 

I said I was getting an appointment with the ED Nurse to try pellets or injections. I dont think oral sex was actually on offer. But if that is the case welll injections it is thenhttp://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-tongue-out.gifhttp://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-tongue-out.gif

Cheers

Bill

User
Posted 08 Aug 2018 at 13:35
Injections don’t work for everyone, there are some men for whom nothing works including the vacuum. John was okay with injections until his priapism and after that, they only worked about a third of the time. One of the things that is out of our control is how they have been stored at the pharmacy, whether they have been left in a hot delivery vehicle and so on; we definitely had a faulty batch where every single injection failed. Dad has always used the single chamber caverject which has to be stored in the fridge and then mixed just before injecting and doesn’t seem to be as sporadic as the dual chamber version but is of a much higher dose.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Aug 2018 at 14:36
Thanks again all

I'm not sure if I will actually try anything for real at the appointment or have a chat and take either or both to try at home?

I have a slight concern of getting a stiffy that lasts to long and having to wait there for it to subside. Although I suppose if that happens atleast I'll know it works.

Cheers

Bill

User
Posted 15 Jan 2019 at 08:10
I never got thet ED clinic appointment due to staffing issues and cancellations. However I now have a repeat prescription for 5mg daily tadalafil with viagra for events. Things are still slightly and slowly improving in that department.

Urinary urge and frequency is manageable.

My next PSA test will be in about two weeks with follow up appointment another week on.

I posted the below in CJ's thread about a week ago.

β€˜β€™I so far have undetectable psa following RARP almost two years ago but with extracapsular extension there is a fare chance of recurrence. If if it does recur I too will resist scattergun RT to the prostate bed without something to target as I already suffer with IBS, fissures, hemorrhoids urinary frequency and urgency, ED etc and fear making things worse.’’

Lyn replied pointing out that a PSA increase now, after being undetectable since RARP would be typical indication of a recurrence in the prostate bed and salvage RT would likely be successful.

My thoughts are that if they don't know where in the prostate bed the cancer is they would zap the whole area and due to previous existing issues and ongoing ED and urge/frequency issues I would not want to risk making things worse so would resist RT.

I hope that if there ever is a recurrence I could wait until it could be seen on a scan so that there is a specific area to target, therefore limiting damage to other organs. I have not heard of this approach though.

Hopefully my PSA will not rise, but if it does I would rather be prepared with the right questions and arguments if appropriate at any future consultations in advance.

Any thoughts anyone please?

Cheers

Bill

User
Posted 15 Jan 2019 at 08:23
PSA less than 0.01 I don't know why you are even thinking about a recurrence!!!

Forget about it until your next test and get practicing with your knackered willy.

If you did get an occurrence then waiting until PSA greater than 0.1 and scanning for it is certainly a strategy some people use. Unfortunately you will be lucky to spot anything at that level. Like I said forget about it it most likely won't happen even with a T3A.

User
Posted 15 Jan 2019 at 08:53

The problem Bill is that we imagine the 'what's left in the prostate bed' to be a little tumour that is tangible. In reality, it would be tiny clusters of cells which wouldn't usually be seen on scans, even the best ones, until much later when it might be too late for salvage RT. 

As francij says, you are worrying about something before it happens but if it did happen, bear in mind that John still had ED when he started salvage RT/HT and is now fully functioning; most of his improvement came in the year after RT finished.

Edited by member 15 Jan 2019 at 08:54  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Jan 2019 at 09:03
Thanks Lyn & francij1

Yes, PSA test anxiaty at play. I just like to know the what ifs in advance.

Both your replies are reassuring and helpful thanks.

Cheers

Bill

User
Posted 16 Jan 2019 at 11:33

My husabnd Michael is the samw age as you and had an identical pre op psa and histology as yours. His Psa waa found to be raised on a routine health check in Feb . We work in Saudi so came home to the UK in April and the cancer diagnosis was confirmed . Ww returned to the UK in June for the surgery and thankfully aa we are both teachers he had the summer to recover which was surprisingly quick . He was fully continent witin 2 weeks. He still has ED which is getting better in 5mg Cialis . He has just used his first Caverject. Michael has now had 3 psa tests at <.002. I suffer greatly from the psa anxiety , he less so. 

Everything crossed that there will be no recurrance . 

User
Posted 17 Jan 2019 at 08:49
Thanks for the reply Shabari and good luck with OH's ongoing recovery.

Cheers

Bill

 
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