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RARP Good News

User
Posted 08 Apr 2018 at 15:50
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 15:50
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 17:19

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

User
Posted 26 Jul 2018 at 18:44
Thanks Ian for the good wishes and all the best to you for your results on the 1st

Cheers
Bill
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User
Posted 08 Apr 2018 at 19:05

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 19:50

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 08:06
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 15:40

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 17:19

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

User
Posted 26 Jul 2018 at 18:44
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 21:17
Anyone tried both Alprostadil pellets and injections. Any preference either way?

Cheers Bill
User
Posted 07 Aug 2018 at 22:53
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 11:37

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


๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

User
Posted 08 Aug 2018 at 14:12

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 14:26

Originally Posted by: Online Community Member


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


๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚



 


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 14:35
Injections donโ€™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 doesnโ€™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 15:36
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.

โ€˜โ€™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.โ€™โ€™

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
User
Posted 30 Jan 2019 at 21:41
Update:

Two years today since the RARP and I just got another <0.01 PSA, so the good news continues and the PSA anxiety can do one for a while.

Urge and frequency are still a bit of a nuisance but managable

ED was very slowly improving but recently seems to have plateaued, although that has happened before and improvement continued again so I live in hope and keep trying with pump, ciallis and viagra. I finally got an ED Clinic appointment for soon and will try injections or muse.

Over the past few weeks flow has decreased from 13 to 7.5 ml/sec. I fear a stricture forming but the last few days have had some slight stinging so I hope it's an infection. Im doing a urine sample tomorrow and seeing my Uro on Tuesday.

There are many sufferers and carers whose journeys are far worse than mine and my heart and best wishes go out to you all.

Good luck to you all.

Cheers
Bill
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

User
Posted 07 Feb 2019 at 19:54

I saw my Uro and he has prescribed anti biotics for a slight infection. He doughts that the infection will be causing the low flow. I will see him again in two weeks. He said that the low flow could be caused by scar tissue building up at the new bladder anastomosis. He has said that his likely approach will be to have a look with a rigid systoscope with a view to doing a dialation or a small incision if necessary while he is in there.


Flow now varies between 5 and 7ml/sec. I will ask if early intervention is best or could it be left because I dont want to agrivate anything that may effect continance or urge and frequency.


Any experiences or thoughts would be appreciated.


Maybe I should post this in a new thread with a different heading?


Cheers


Bill

User
Posted 07 Feb 2019 at 20:35

Bill


I personally keep all my personal posts on the same conversation/thread it is easier to keep track of your history. 


I started with slow flow problems a few weeks after RARP and have had numerous dilatations and cuts into scar tissue. Read my profile. Bri on here declined treatment at the last minute and as managed quite well. They do say it can take several attempts to sort the problem.


Any questions please ask.


Thanks Chris


 

Edited by member 07 Feb 2019 at 20:37  | Reason: Missing word

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 07:26
I fear โ€˜hemlock clipsโ€™ may be poisonous!๐Ÿ˜‰

โ€˜Hem-o-lokโ€™ clip ligations are sometimes used in abdominal surgery, but my surgeon said he didnโ€™t like or use them. I have read about them coming loose and โ€˜migratingโ€™ and causing problems elsewhere.

Best of luck.

Cheers, John.
User
Posted 08 Feb 2019 at 07:29

Bill


I read that the clips can only be seen on certain types of CT machines at a specific setting, if they have been in there for long enough they may get coated and the coating may show up. My first clip was found just floating in the bladder the second one was sticking the urethra and needed a bit of persuasion to come out. Mine were found with the camera while investigating the very slow flow, at times down to 0.5/sec.


It was Bri who turned it down on the slab. I was 99 percent dry soon after the RARP and I did regain my continence after each of earlier dilatations. The combination of RT and further problems means I always wear a pad and do suffer with urge inconvenience, but the bladder situation means a leak is quite small.


Bri's flow was around 5MLS/sec. Subject to  advice from your team you could monitor the flow and get intervention if it gets worse. My flow declined quite rapidly, so had no choice but to have intervention. I did intermittent self dilatation after my dilations, I sometimes wonder if all the prodding into the bladder and the additional effects of the RT made the damage worse.


If the dilations are not successful there is the option of urethral reconstruction or Urethroplasty. Not a simple op.


Best wishes with you treatment. Have a look at the member "Flexi" I think he has also had stricture issues.


Thanks Chris


 

User
Posted 08 Feb 2019 at 07:34

Originally Posted by: Online Community Member
I fear ‘hemlock clips’ may be poisonous!๐Ÿ˜‰


Best of luck.

Cheers, John.


John, I hope not, I probably still have around five in my body.


Thanks Chris

User
Posted 08 Feb 2019 at 15:43

John, I love your quick wittedness ๐Ÿ˜„. 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 08 Feb 2019 at 15:50

John 


Very good, that went straight over my head.


Thanks Chris

 
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