Active Surveillance or Surgery?

User

Posted 26 Sep 2019 at 18:32

John (Bolinge)

Were you told that penile shrinkage would be worse with the Retzius procedure compared to standard RARP ?

Thanks Chris

Edited by member 26 Sep 2019 at 20:03 | Reason: Corrected name

User

Posted 26 Sep 2019 at 19:30

No, this is a bit of a hidden secret, as in the pre-operative paperwork you get, it only refers euphemistically to ‘changed physical appearance’, not ‘You may end up with a micro-penis’, and I think that can be a consequence of any prostatectomy surgery.

Retzius-sparing was pioneered by Bocciardi (the tenor at La Scala😉) in Milan, and a guy in Seoul, and Professor Whocannotbenamedhere is a protogée of theirs. In turn he is mentoring his fellow consultants at his NHS practice in Guildford.

The strange thing is that sometimes when I have a crap, I get a lazy lob approximating what I had before. Matron had some wise words about that and that different erectile nerves are involved.

I suppose the long and short of it (see what I did there?) is how much length you had to start with and how big the prostate and its tumour were that had to be removed in order to reconnect the urethra, together with how many nerves could be spared.

I know others here have retained ‘physical appearance’ and erectile function, and good luck to them. I am quite happy and I only mention my particular situation to augment the knowledge base here.

Off to the Caribbean on Saturday (not Thomas Cook) so I will be more concerned with sunburn and mosquitos than PCa..

Cheers, John.

Edited by member 26 Sep 2019 at 19:32 | Reason: Not specified

User

Posted 26 Sep 2019 at 20:11

John

I think one of the main differences in the ops is that the bladder does not get moved with the retzius and this improves continence recovery, but presumably means the urethra has to be pulled up a bit to meet the bladder, not moving the bladder also allows the use of the SPC.

Thanks Chris

User

Posted 26 Sep 2019 at 22:11

Originally Posted by: Online Community Member

it only refers euphemistically to ‘changed physical appearance’, not ‘You may end up with a micro-penis’, and I think that can be a consequence of any prostatectomy surgery.

Reminds me of the old joke ... man says to woman "so what do you think of this monster?" woman replies "oh, it's like a penis only smaller"

Our Mr P told us about a patient of his who was left permanently with such shortening that he was unable to urinate standing, he had to sit down to wee.

Have a great holiday - no other operator goes to Gambia so I don't know what we will do and I am already worrying about all our friends out there who depend on tourism to earn a living 😢

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

User

Posted 27 Sep 2019 at 04:09

We booked to go to Cuba for Christmas with Thomas Cook, but fortunately only paid £100 deposit. I just feel sorry for the nice girls in the shop who are now redundant.

User

Posted 29 Sep 2019 at 21:24

I underwent a RP in early Feb 2019 on the NHS, but was fortunate to find an experienced surgeon who also had additional funding for the NeuroSafe technology whilst I was on the table.

I met Professor Whocannotbenamed for a consultation and he felt it was a very useful addition if possible.

Just had the results of my third PSa test and readings still low.

PM me if you want more details.

Good luck

Mark Ja

User

Posted 30 Sep 2019 at 22:48

I have been wrestling with which of two treatments available to me to go with - prostatectomy or Brachytherapy - and found this thread of messages very useful. I am also not sure about the timing: I am trying to schedule work and holidays and could do November or January.

I had PSA 6.8 in May 2019; MRI: PI-RADS 3; T2 N0; TP Biopsy: Gleason 3+3 - 3+4: 11/39 cores (max length 4mm; 15% pattern 4)

I found this thread very useful as I was keen to meet with one or two men - preferably who went through PC at around my age - 59 - who have undergone either prostatectomy or Brachytherapy in order to understand some of their decision making processes that may assist me. This thread really helped. Thank you.

However, I also have a lot of questions about general side effects including practical implications of the effects of ED, penile shortening, and penile rehabilitation but would appreciate having such a frank discussion about this with in a one to one forum with one or more men who have this experience and who would be happy to discuss this with me.

User

Posted 30 Sep 2019 at 22:59

Phone the nurses at PCUK (number at top of the page) - they will put you in touch with one of the charity's mentor / survivors in your area for each of the treatments on offer, if that is what you want. John didn't meet anyone but he did speak to two of the volunteers by phone and both offered to meet for a coffee if he wanted.

The risk of speaking to a random from a site like ours (rather than someone that has been approved and given guidance on how to be that befriender) is that you may get very one sided or unreliable info. Better to have discussions openly if you can so that there is some balance.

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

User

Posted 30 Sep 2019 at 23:05

Thanks Lyn. I hear you and have made contact with the Jersey PC Support Group.

User

Posted 30 Sep 2019 at 23:56

Hi Grant

I'm on the cusp of that decision too in terms of surgical or active surveillance. Chatting on here has been invaluable plus I contacted my local group and have met up with one of two to understand their experiences. Really useful as all feeds into the mix. Key thing that has come out of a few conversations is if you go down the surgery route its prudent to research your choice of surgeon with respect to high volume and stats.

Its likely I will go for robotic radical prostatectomy using nerve sparing Retzius approach (ie under the bladder). With Neurosafe. I’m stage 1 with Gleason 6 (3+3) in 5/20 biopsy samples with largest core being 5mm. PSA 5.6, age 52. From my perspective I’m balancing this against active surveillance as I fully understand the risks. But I also understand that there could be other less clinically significant tumour sites of more aggressive cells that were not picked up on biopsy. Based on all this I’m leaning towards having it out when margins are good plus hopefully reducing probability of spread. I’m mindful that it’s low grade but adenocarcinoma is still fundamentally a metastatic disease.

i spoke to my consultant ref Brachytherapy but he said he prefers to give it to patients 60+ He did say in my case it could potentially be curative but can cause irritation to bladder and bowel plus there is also a longer term risk (10-20yrs) of secondary primaries from the radiation.

I wish you the very best and hope you find best path soon. Unfortunately all have their caveats 🥴

Edited by member 01 Oct 2019 at 00:08 | Reason: Not specified

User

Posted 01 Oct 2019 at 14:42

Grant, if you haven't already read this, it may help

https://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED

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

User

Posted 02 Oct 2019 at 21:26

Thanks Lyn for the link; very helpful indeed.

User

Posted 02 Oct 2019 at 21:31

Thanks TechGuy for your post.

Grant60

Edited by member 02 Oct 2019 at 21:31 | Reason: Not specified

User

Posted 16 Oct 2019 at 17:23

Hi TG,

Thanks for your message, I'm unable to reply direct. You are correct, my surgeon is in the same practice - surgery at Guys Hospital. Active surveillance or intervention.. I was T2 organ confined, however, my Brothers pathology was very similar to yours, he elected to have the same procedure as myself by the same surgeon. Our Father died of PC so for us it was probably an easier decision. He's 4 years older than me but his outcome mirrors mine. DC suggested I visualise my cancer as a glacier not a forest fire, even so I decided to remove the anxiety active surveillance would create. As it turned out, my post surgery pathology indicated Gleason 3+3 but the cancer was only just contained in the capsule. Had I waited even a month I might well be in a different position.

I hope your appointment went well today - good luck with your recovery.

Simon

User

Posted 18 Oct 2019 at 10:30

Hi Simon

Thank you so much for coming back to me. Ah yes the anti spam stuff....I think its based in postings and once you reach a threshold you can direct message.

Sounds like you and your brother have had a fantastic outcome. The three consultant in that practice do appear to be at the top of their game. I saw my local urologist the other day following the London MDT last week. General view is much the same as yours in terms of Active Surveillance or if I'm happy with potential risks then surgery. I have multifocal tumours in five locations the biggest being 5mm and smallest 0.5mm. One is quite close to the capsule ie 1-2mm i think. My consultant said its very slow growing and at this stage as a type 3 cell pathology it cant break through the capsule. Not sure I trust that 100% but have to trust expert opinion.

I'm very mindful that at any time type 4 or 5 cells could evolve and the outlook can change without much notice.

Like many on here including yourself I'm heavily swayed towards removing it while the cancer is in situ. Just seems a sensible option given its highly likely localised plus more scope to save as much of the neuro-vascular bundle as possible.

Next steps are engaging with GP this afternoon and get referred to Prof Whocannotbenamed and push ahead with a Retzius sparing RP + Neurosafe. Bit of a trek to London Bridge (90mins train) but benefits outweigh this.

I considered having the procedure done by my consultant who is a very well respective DaVinci ninja but just seems prudent to go with what I view as one of top high volume urologists/surgeons in the UK. Then if there were complications after you wouldn't be sitting there thinking 'what if..' Plus the other point was my surgeon does use a limited number of hem O lok clips...something I want to avoid if at all possible.

Subject to availability will aim for end of Nov time as I want to get my BMI down from 27 as a reduction in visceral pre-op is probably a good idea and will aid a good outcome. Plus is allows around 3 months heal time after my biopsy. My consultant mentioned the area can be 'sticky' a few months after biopsy so a time gap is useful although no data on this.

How did you find the supra pubic catheter? My consultant said he doesnt use it as can cause leaks. I guess either approach has pros and cons. Not much of an issue in my view for 10 days. Taxi ride back might be interesting though :-/

Best Regards

User

Posted 18 Oct 2019 at 11:04

TG,

My ‘heal time’ was around ten days, coinciding with when the supra-pubic catheter was removed, and when it was, I was urinating in the normal fashion with little leakage thereafter.

The worst part was the dissolvable stitches in the six perforations, three of which did not, and became infected and itchy. Keep an eye on them. Sometimes you feel a ping in your belly as one breaks.

Best of luck for November, you are in good robotic hands. I send Da Vinci and the Prof a can of WD40 every December by way of a Christmas present🎁 😂😂😂😂

Cheers, John

User

Posted 18 Oct 2019 at 11:36

Hi John

Thanks for the heads up. Talking with a few of the guys on here that seems to be pretty much the time line so fingers crossed :-)

I'll get some thick pads for the trip home. I'll probably get a taxi as based not far outside Wokingham although I think train is probably just as easy.

What did you do ref the infected stitches? Did that mean a trip to London Bridge again or were you able to get local GP support etc? Thats the only thing that concerns me is local support especially out of hours. And how the NHS view treating private op patients.

Top tip ref WD40 :D

Cheers

User

Posted 19 Oct 2019 at 15:55

DC recommended a suprapubic catheter. I suspect either is enough to drive you mad though. I didn't think to shave the insertion area, its an open wound and as it heals, hairs become trapped! When you forget and move quickly, usually at night, well, you can imagine.. Removal was easy, I didn't have a stitch, just a dressing. Luckily no infection which is common. I left the hospital day 2 in a Taxi to Euston station followed by a train to Chester. Interesting day.. I must have looked quite a sight to my fellow passengers! The 'bag' was already stressing me out though, trying to empty it in the loo whilst the train was moving was an experience best forgotten - funny though.

Wounds wise, stitches and superglue for me. Those that didn't fallout I snipped.

Hope that helps!

Simon

User

Posted 19 Oct 2019 at 17:25

Thanks for that Simon

that did make me chuckle. I’m an engineer by trade so never see these augmentations as nothing but a technical challenge. Having a warped sense of humour helps buckets. When I came around after my biopsy the nurse on observation duty asked if I knew my name...I said of course “Bill Gates”. I think at that point they knew it was going to be a long day. The doctor asked how I felt...my retort “like I am old Windows 98 system booting up”

I took the train back after biopsy and things downstairs were pretty numb and bruised. I learnt pretty quickly to use the loo on the first twinge from the bladder and be patient. En route home from Paddington I stood by the loo like a place of worship. The guard gave me a strange look but thankfully I still had a dressing on my hand from the IV and explained I had been in hospital for a procedure. And I’d been filled with gallons of fluid so needed to be on alert for the loo. The support of the train staff was epic and they offered me a free coffee. But with a face of shock I declined the kind offer for obvious reasons.

I’m already thinking of load balancing the bags in my legs for the trip. I will look like an F15 on a long range mission :-/

thanks again for the feedback as every nugget and subtle nuance is invaluable.

Edited by member 19 Oct 2019 at 17:27 | Reason: Not specified

User

Posted 20 Oct 2019 at 01:51

“I'm very mindful that at any time type 4 or 5 cells could evolve and the outlook can change without much notice.”

Just to be clear, G3+3 doesn’t usually evolve into G3+4 and then 3+5 or anything like that. Generally speaking, whatever Gleason you are diagnosed with is what you will remain. Occasionally, there are very small amounts of a higher pattern at diagnosis which develop faster than the diagnosed pattern and eventually become more prevalent but where the lab thinks that is a possibility, the patient is given a tertiary score [e.g. diagnosis would be G6(3+3) + tertiary 5]. It tends to only be pattern 5 that overtakes the original cells.

What is more of a concern in a situation like yours is being able to identify when the T1 or T2a is on the move and becoming a T2c or T3a. The only monitoring tools are PSA and regular MRI and DRE.

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

User

Posted 20 Oct 2019 at 02:02

The sutures on the wounds that became infected involved three trips to the GP nurse and a course of antibiotics. The stitches are so fine that the nurse had to use a magnifying glass to remove them, and she only removed what she could see at the time, hence the three trips.

I woke up to discover I had been given a free half Brazilian, so no problems with pubic hair around the supra-pubic catheter. The leg bag is a bloody nuisance, but it’s only for ten days.

There was an embarrassing / amusing moment in the pub when I hadn’t closed the drain tap properly, and ended up pissing all over the floor! I still haven’t heard the last of it eighteen months down the line. I just tell the piss-takers: “Don’t mock the afflicted”😉

Cheers, John.

User

Posted 20 Oct 2019 at 02:57

I have just been rereading through this thread and would just like to pick up on a statement made by King Kenny awhile back as he appears to believe having a RP means he will no longer have to have PSA tests 'Started to investigate all possibilities and RP was the obvious choice for me as it seemed that it was the route that would give me the best chance of getting rid of the PCa for good. I didn't want another 15 years of PSA tests and biopsies..' Anybody who has had any treatment for PCa should not take it for granted that some PCa cells haven't escaped the knife, radiation or whatever and will definitely never be a problem even years later because this can and does happen in some cases, although where the cancer was well contained the chances of this happening are less. It is important that after treatment a man does have regular PSA tests, the intervals of which can be increased over time if a patient's PSA is stable and there is no other cause for concern.

Barry

User

Posted 25 Oct 2019 at 15:18

Thank you so much all for the replies :-). Apologies for my tardy response as been out with man flu this week. Booked an appointment with the Prof for next week to get the ball rolling.

Have a good weekend and hope no one gets snowed in. #mediasnowscare

Edited by member 25 Oct 2019 at 15:22 | Reason: Not specified

User

Posted 08 Nov 2019 at 13:32

I was 52 and 3+3 - decided on the spot for surgery and no major regrets so far. My PSA was very low anyway (oddly) at 0.7 but there's proof that PSA isn't the be all and end all!

I would say if it is unduly worrying and stressful to go ahead with the surgery...but my opinion in isolation of course!

Good luck with whatever you decide...

Mark

User

Posted 13 Nov 2019 at 12:10

I thought I should post the post-surgery update that was requested.

Its now 9 weeks since surgery and I've had my follow up consultation and attended a number of seminars at the Urology Department.

In short, My PSA in <0.03 and I will be tested again in March.

Pathology results have upgraded my Gleason from 3+3 to 3+4.

I am damn as near it, fully continent. I'm lucky, some of my surgical cohort are struggling.

I've returned to the gym. Swimming and speed walking, but will commence jogging shortly.

I'm now fully engaged in my ED rehabilitation. Not much to shout about unfortunately. I'm popping Sildenafyl 3 times a week and pumping away on 6 (even God took a day off).

I'm not unduly concerned about the lack of progress currently, but I am trying to get someone to indicate how long I should continue down this path before going back to my GP and asking to try an alternative substance. Failing to extract any indicative timelines from clinicians, which is frustrating.

Lastly, I do have pangs of anxiety. Was I too hasty to choose surgery over an alternative.? All the updates on the homepage about the success of various treatments do introduce some regret over the action I've taken - that will basically only disappear with the return of my erections.

C'est la vie. Wish me luck.

..Twist.

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