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Active Surveillance or Surgery?

User
Posted 23 Sep 2019 at 13:03
You can read the contemporaneous notes of my surgery if you look up “Retzius sparing” here.

Although my Cave of Retzius and half of my nerves were spared, there is no sign of erectile function - despite chemical enhancement - but continence is fine. A bonus with the Prof’s procedure is the supra-pubic catheter, i.e. no annoying pipe rammed down your dick.

I did ask him during my post-operative consultation: “Do you do penis extensions?”, as an inevitable consequence of prostatectomy is what the medics call “changes to physical appearance”, i.e. a truncated penis.

Anyway, the most important consequence of my prostatectomy is that I no longer have cancer!

Cheers, John.

User
Posted 23 Sep 2019 at 13:35

Hi John

Thanks for the heads up. Yes, been looking at Retzius is some detail and the approach of going in under the bladder looks very prudent indeed. I’m split at the moment but it’s early days on this journey. Although being low grade cancer (Gleason 6) I’m also mindful that this is only what was sampled plus the probability of upgrades post surgery. My ex works in cancer drug trials so I also heave a little bit of visibility in how things can progress and the biology behind it ie the longer it’s left in situ increases probability of spread as it is fundamentally a metastatic disease. 

Immunotherapy is something that could be on the horizon soon in terms of treating low-grade rather than extending life in more advanced cases. Talking to my ex who is an immunotherapy scientist by trade she thinks that’s around 10-15 years away with the most optimistic view. These novel new approaches always take a long longer to get out the lab than hoped for.

Surgery does seem the best option while there are good margins and as far as clinically detectable should be localised. As you say our goal is to be cancer free or at least in remission for as long as possible balances with a quality of life.

ED and shortening of my penis would be quite a loss as my age my for me the focus is reasonable quality of life and reach as reasonable innings. Continence is something I would hate to lose but I can managed any short term issues. 

I saw the prof prefers suprapubic catheter. That does make a lots of sense in terms of healing. After having a cystoscopy back in 2016 I know exactly where you are coming from.

Wish you the very best on your road to recovery and appreciate you sharing your experiences.

best

TG

User
Posted 25 Sep 2019 at 10:27

Dear all,

I thought I would post an update for the general audience that may perhaps be of most interest to Techguy.

I bit the bullet. Rightly or wrongly, the surgeon I was referred to, believed that the prostate would have to come out at some point, given the progression over the previous 12 months. The more I thought about it, the less I could see to be gained in delaying the inevitable - in fact - all I could see was an increasing risk profile.

I had surgery 2 weeks ago. I didn't want it, who does, but I committed. I was in for 2 nights and made to feel a wimp for that extra night. Ah well!!

I took pain killers for a week, more out of fear rather than actual pain. My Catheter was removed after 7 days - Hooray!! I'm not dry, but I'm pretty damn close - clinicians seem impressed. 

It's too early to even talk ED and in the meantime, I need to rest, exercise a little and build my energy levels up. 

The only slightly sour note I have is that post surgery, I pressed the surgeon on whether he had spared my nerves? The response I got was something like, there was incremental nerve sparing on both sides (which is too complex to quantify). With regards to future Erectile function, I guess I need to aim high, put the training in and hope for the best - but if anyone has experience or knowledge of incremental nerve sparing, please let me know.

As stated by someone previously, my head is in a better place than 8 weeks ago. I have no regrets so far and hopefully, this is the end of the PCa for me.

P.S. Very many thanks to all for your contributions.

 

Edited by member 25 Sep 2019 at 10:28  | Reason: Not specified

..Twist.

User
User
Posted 25 Sep 2019 at 21:58

Hi Chalkmate

Thank you so much for the update.

I think I’m in pretty much the same tracks as you albeit much earlier on the timeline. Will wait two weeks for MDT London meeting but will engage with the Prof Whocannotbenamed and get a second option with a view to RP. Even though I have low grade adenocarcinoma of the prostate you just don’t know what else is there plus when the cells could decide to go on a road trip around Route TG.

I guess they did the retzius sparing approach with NeuroSafe?

Sounds like you are an excellent road to recovery. Hope the long term outcome reflects this.

Makes so much sense to get it out when localised. I’ve only been diagnosed a week now and spent a lot of time researching. Playing roulette with time doesn’t seem prudent that’s for sure.

Best regards

TG

User
Posted 26 Sep 2019 at 10:23

Originally Posted by: Online Community Member

I guess they did the retzius sparing approach with NeuroSafe?

..........

TG

NeuroSafe (a procedure where prostate samples are evaluated in real-time during the operation by a pathologist in situ) is a great idea as the surgeon knows what is cancerous and what can be left untouched.

My friend had a similar thing with skin cancer on his nose, where his plastic surgeon was trained in pathology so she could see how many slices to remove to get down to ’clean’ tissue. My mate had five slices removed, where normally it’s only two or three, but luckily he’s got a big nose, so he still looks OK. Moh’s Surgery, I believe.

NeuroSafe is not offered on the NHS hospital where Professor Whocannotbenamedhere works, but is at one or two London private hospitals where he practises. A very good idea.

Cheers, John

Edited by member 26 Sep 2019 at 10:31  | Reason: Not specified

User
Posted 26 Sep 2019 at 10:39

Thanks John

Yes, been reading up on it and great approach to get near real-time visibility. 

Thanks for clarifying about locations where available. They came up the other night when I had a good chat with a local friend who used to work in urology before retirement. 

The surgical procedures are coming on in leaps and bounds so if I go down this route I hope for at least continence. Would be nice also not put the little chap into retirement but if it’s at the cost of being PCa free then it’s a price I’m willing to pay.

Thanks again 

TG

User
Posted 26 Sep 2019 at 12:32
Don't be to eager to write off your willy!! You might be surprised to find out how much impact it has!!
User
Posted 26 Sep 2019 at 15:00

Originally Posted by: Online Community Member
Don't be to eager to write off your willy!! You might be surprised to find out how much impact it has!!

Speak for yourself, love. I asked Professor Whocannotbenamedhere if he did penis extensions, and he just laughed.

You might find me on a future episode of ‘Embarassing Bodies’, but I doubt they take on hopeless cases.

Am I bovvered? Nah...

User
Posted 26 Sep 2019 at 17:56

Totally aware not to trivialise the impact. But for me I’d rather risk that at maybe a higher probability of removing all the PCa. 

I suspect procedures maybe be available at some point in the future to address that but I want to take the pathway that gives me best chance of reaching a good age without too much discomfort.

Plus like John a promising tv career might be on my horizon 70+ #hoarders 🥴

have a good evening all and thanks again for all the views. Really helps put all options into context.

TG

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
Hi

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

 
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