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User

Posted 28 Jan 2018 at 13:08

HI,

I've now go to the decision stage and like all of us, there are no good options but some are less devastating than others. I'm hoping to be lucky to have caught it early enough so have more options.

My first consultation lead me to believe that the only good option was surgery to remove it, but after extensive tests for a secondary cancer or Mets, which found nothing conclusive, it seems my resignation was a little premature. I have to revert to an open mind. I have to decide on a course of treatment and the radiation of a fit body feels inappropriate. If it fails later then the scar tissue makes it much more difficult to remove the prostate at a later date.

I hope the probability of a clean localised removal works IfI go that route it might let me sleep better rather than hoping Brachytherapy and hormones will halt the progress.

I would appreciate an input on this and especially on the fairly new Retzius Nerve Sparing op. I can't find anywhere that gives me the cons as well as the sales patter. It seems to have a lot of benefits over the standard frontal laparoscopy method (but riding my bike might be tricky for a while). More later

User

Posted 28 Jan 2018 at 15:25

Retzius saving surgery is very new so there is no UK data - we don’t have any active members that have had it but there is a new member who will be having it about now.

The belief that if you have surgery and it fails you can have RT but if you have RT and it fails you can’t have surgery is flawed thinking on 2 grounds -
a) there are a few surgeons who will operate on an irradiated prostate but it is difficult, the risk of permanent incontinence is high and there is no chance of nerve-sparing and
b) making a treatment choice because there is a second bite at the apple if it fails is no good - whichever way round you do it, if the primary treatment fails then the outcome is statistically very poor. In other words, if the first treatment fails, the salvage treatment is also likely to fail. Much better to choose the treatment most likely to get you a cure first time round.

Also, Rich mentions self-injecting but be aware that not all men have to do this.

You mention cycling - apart from one member’s consultant who recently disputed this, the accepted medical approach seems to be that cycling too soon after RP can reduce the chance of recovering erections. John is a keen cyclist but was advised not to ride for 6 months after the op - frustrating at the time but the surgeon said what was the point of going to the trouble of having nerve sparing RP and then not doing everything you can to help the nerve bundles to repair themselves.

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

User

Posted 28 Jan 2018 at 22:07

Hi Lyn

I was dry 3 weeks after the catheter was removed.

User

Posted 28 Jan 2018 at 23:49

An introduction to Retzius sparing radical prostatectomy https://www.santishealth.org/prostate-cancer-information-centre/an-introduction-to-retzius-sparing-radical-prostatectomy/

Retzius sparing radical prostatectomy one year on https://www.santishealth.org/prostate-cancer-information-centre/retzius-sparing-radical-prostatectomy-one-year-on/

Edited by member 29 Jan 2018 at 00:03 | Reason: Not specified

Shut down the voices of doom and spend your time living.

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User

Posted 28 Jan 2018 at 14:04

Hello Gangley and welcome !!

I was going to say take your time but having read your profile I see you have non PC involvement of lymph nodes and you have obviously researched your options.

I haven't heard of the Retzius Nerve Sparing (unless it goes by another name too) but hopefully somebody else will know about it.

If you do go down that route, any information you can pass on eventually will be invaluable to the members on here.

Good luck whichever option you go for

We can't control the winds - but we can adjust our sails

User

Posted 28 Jan 2018 at 14:52

Hi Gangley

I was diagnosed last April after having no specific symptoms of any prostrate trouble. I just kept getting an occasional pain when I passed urine. I went to the doctor who sent me for blood tests and they came back with a raised PSA of 4.3

Following this I had a biopsy and then went in the body scanner and discovered I had the early stages of PC on both sides of the prostrate Gleason 4 and 3.

After discussions with the Surgeon and Radiotherapist and being only 55 years of age I was recommended for robotic surgery. You can have surgery and if that's not successful you can follow with radiotherapy, but if you have radiotherapy first you cannot have surgery after.

The surgery was ok no real bad pain, after an overnight stay I was sent home with a blood drain, catheter in place and blood thinning injections and pain killers.

I had to keep measuring the amount of blood coming from the drain (sounds worse than it was) and then when it had slowed down I went back to the hospital for the drain to be removed.

Don't worry about the thought of injecting yourself its very easy and doesn't hurt.

I had a complication as I had a leak in my bladder and needed 4 cystogram's so the catheter stayed in for 9 weeks, It was a bit uncomfortable but the majority of cases the catheter usually only stays in for 10 days max.

I was dry after 3 weeks.

I'm so glad I made the decision to have the operation and be rid of this terrible disease, today I got the good news, my PSA is less than 0.01 for the third time.

I had nerve sparing surgery on both sides and as yet still have trouble with ED - my specialist nurse said it was still early days (had operation in June 2017) but signs are there for recovery :-)

Hope my experiences help you make the right decision for you and I wish you all the best with whatever you decide.

User

Posted 28 Jan 2018 at 15:25

Retzius saving surgery is very new so there is no UK data - we don’t have any active members that have had it but there is a new member who will be having it about now.

Also, Rich mentions self-injecting but be aware that not all men have to do this.

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

User

Posted 28 Jan 2018 at 15:27

Rich, you have posted a couple of times recently that you were dry after 3 weeks - this is a bit confusing so can you clarify whether you mean that you were dry 12 weeks post op / 3 weeks after the catheter was removed?

Edited by member 28 Jan 2018 at 15:31 | Reason: Not specified

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

User

Posted 28 Jan 2018 at 22:07

Hi Lyn

I was dry 3 weeks after the catheter was removed.

User

Posted 28 Jan 2018 at 23:49

An introduction to Retzius sparing radical prostatectomy https://www.santishealth.org/prostate-cancer-information-centre/an-introduction-to-retzius-sparing-radical-prostatectomy/

Retzius sparing radical prostatectomy one year on https://www.santishealth.org/prostate-cancer-information-centre/retzius-sparing-radical-prostatectomy-one-year-on/

Edited by member 29 Jan 2018 at 00:03 | Reason: Not specified

Shut down the voices of doom and spend your time living.

User

Posted 10 Feb 2018 at 21:15

HI Rich,

Thanks for your reply, I haven't checked in for a while. It is easy to get a bit obsessed with all this and my partner certainly has.

The Retzius op differs by entering and removing the prostate from behind the scrotum and Professor [name removed by Moderator] is one, if not "the" expert in the country. I have watched both the normal robotic op and this on on Utube and it is not for everyone. What did amaze me was the size of the robotic tools which are amazingly small. The video appears to show huge great gashes being made but in reality they are finely tuned tiny cuts with little bleeding. The problem with the Retzius us that it is a very small workspace and few are trained to do it so far.

It seems that it is better for regaining continence, but doctors are cautious to claim that until it has run the test of (much) time. I hope the ED is the same. I am worried about that and your post does reassure me that there is life after PC. It is proving very stressful relationship wise.

I found a lot of work has been done on relationships and the regret syndrome, wondering if you made the right choice after the op. It is an interesting issue and a big decision. I See Prof [name removed by Moderator] Tuesday having said yes to the Radical route.

Thanks again for your input, Much appreciated

Gangley

Google retzius nerve sparing prostatectomy

Edited by moderator 10 Feb 2018 at 21:33 | Reason: Not specified

User

Posted 11 Feb 2018 at 11:39

These were the most useful stats I found for side effects after normal RP

Continence

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

I think it's a shame no pad/ 1 pad are mixed together but still useful I found.

And for ED

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

Again a shame no division between natural erections and drug assisted erections and erection ' enough to have full sexual intercourse' is a broad statement that could do with sub dividing but still I found it helpful.

Regards

Clare

PS these are real time stats for open/ laparoscopic only.

Edited by member 11 Feb 2018 at 11:46 | Reason: Not specified

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