Nerve-sparing surgery

Hi and welcome to the club that noone wants to join. We are here for you. I’m a courage prostate cancer patient so I’m sharing my personal opinion and experience; not medical advice.

I appreciate your concern. I was diagnosed with Gleason 9, (4+5) stage 4 locally metastatic PCa in December 2023. I had the same concerns as you. I was treated at Northwestern medicine in Chicago, which is a center of excellence. I had both an MRI and a PET-PSMA scan which showed perineural involvement on one side only. The other side did not exhibit any extracapular extension or positive margin. The nerves were removed on the side with the perineural involvement, and the other side was spared. My care team was as confident as confidence could be that it was safe to spare the nerves on the one side.

If you’re being treated at a center of excellence and your case has been reviewed by a tumor board as mine was, and your care team believes that nerve sparing carries a low risk then I would probably default to their medical opinion.

Good luck on your journey.

Thanks very much.
I'm in New Zealand (where most hospital care & surgery is free) so I take whatever is offered.
Never heard of a tumor board, but I'll try to ask the surgeon if another scan can be done pre-op, to confirm if cancer is anywhere near the nerve bundles.

I too had extensive perineural invasion on one side. Had nerve sparing where possible but cancer came back 5 yrs later. ‘Came back’ is a misnomer of course. It wasn’t gotten out either because it was not seen by the surgeon or perhaps undetected cells got out already. WHO KNOWS?
But nerve sparing is the way to go - especially at your age where sex is still a concern. No nerves - no sex - no matter what they say about pills, pumps and all the rest. Penile implant would be your only option and that’s got its own set of issues. Best of luck to you, Mate!

Well, as others have said, my personal experience, not medical advice.

I had surgery in March 2014, it was nerve sparing, a very good urologist surgeon.

When reviewing the pathology report and going over his notes and observations from the surgery he said "Kevin, this is an excellent pathology report and from my observations you won't have any problems in the future..."

I'm thinking yes, great, but put my clinical data in the MSKCC nomogram and it says I have a 30% chance of recurrences...!

Now, that also means I have a 70% chance of it not...

As you can see from my clinical history, I was in the 30% group...

That was no fault of the surgeon, keep in mind the state of imaging in 2014 but even today imaging can only see so much.

I did discuss with my surgeon that once he started and saw the PCa was such that the nerves had to go, ok, cure was the priority and I could deal with the other stuff.

To this date I still have sexual function, 10 years later, not even SRT could do harm. Even when on ADT I never lost libido, wife just shakes her head....

Today's imaging is a far cry from the 2014 days so if possible, image and see if that informs your decision treatment.

Keep in mind today's imaging has its limitations with micro-metastatic PCa so a negative result is not necessarily so.

So, perhaps the discussion with your medical team is start with the objective of nerve sparing, if you see evidence...

I can't speak to the concept of the surgery causing spread of PCa cells, that's a discussion for your medical team, 2nd opinions...?

Kevin

Peter, here in Canada we have a similar system of medical care(Gov.) , and its certainly not free if you take a look at your high tax load . We have Pre surgery groups/boards where they discuss each case and concur what procedures should be taken. Its usually hospital by hospital , but can be by region too ! I was tipped off by this by a Dr I never met made a comment on my surgery and case back in 2021 . I asked who he was , and they said part of your "review team prior to surgery " . I good there is a few eyes on your case like this . In this case I would question your doctor more and eleven get a second option on your case - never hurts to do so ! This is my opinion not medical advise, et al . God Bless and lets us know how you make out . James on Vancouver Island .

Is going to be 2 weeks tomorrow since I have RALP, I am 59.
So far I grateful about my choice of treatment.
Regarding your concern about nerve sparing, and PCa recurrence, I will echo what my surgeon said, and also read on Dr.Patrick Walsh about PCa surgery:
The goal of the surgery is to remove the source where the cancer is located.
the surgeon can tell is the cancer is located at the nerve bundles, if that’s the case they will removed.
Note: nerve bundles are located to the left and right side of the prostate. If both of them are removed ED will be an issue, but if at least one is saved, chances of recovery from ED are higher.
the same rules apply to the lymph nodes in the area, or even the prostate itself, which happened when there still tissue left after the surgery that contains cancer cells.
There is also the chance of recurrence, due to microscopic metastasis, this happened when small population PCa cells migrated outside the prostate and years later they are detected.
Every case is different even when the treatment plan is the same.
You have to take it one day at a time, make sure you get all your questions answered by your doctors/surgeon, there are MANY treatment options for PCa cancer, there is no one fix for all.
In my case my urinary incontinence is minimal and getting better every day, No ED.
No pain medications, only discomfort on abdominal area where the surgery ports were done, so I am careful not to overdo any movement but slowly getting back to normal routine.
Wish you the best on your journey.
and good health!

Thanks James. I imagine there's a team of doctors talking about me, but I haven't seen anyone since the biopsy results & pre-op tests.
Sounds like I'll be meeting everyone just before the surgery

That's brilliant. Thankyou, Kevin.
I'd never heard of the MSKCC nomogram but I've bookmarked it for future use.
I'll ask about the cores. I had 20 (rather than the standard(?) 12).
No idea how many were cancerous.
I guess enough for radiation to not be an option. He went straight for surgery. There wasn't even a discussion.

Biopsy was a breeze, though. Urologist was a master at distraction.

Hi Peter - thanks for the note. We probably have similar systems for medical care. I know here in Canada what I did is asked to speak to my team and get a better understanding of who's on it and what they're thinking. It's very regional , so each area has some different rules . Like Vancouver , I dont think they would do it ( too busy) but on Vancouver Island, they were OK about it. They said that could be arranged ( took two weeks) and I did speak to, a few doctors on the team, urology, nurse and a couple radiation technologists. It was a brief meeting about a 1/2 hour , , but I got a lot out of it and it reassured me what they were doing . I was amazed how much work goes into the external beam radiation program. I never did it prior to my prostatectomy, but I should've. The urology guys/DR's at the hospitals have a lot of clout ! I am not a doctor so I can't give medical advice. Only personal experience. Ask your doctor for a good eye on pain control, and the anesthesiologist. Tell him when you wake up you don't wanna feel any pain and no pain for many days. My anesthesiologist was fantastic. I was on two different painkillers and I never felt thing. I was walking about 10 hours after the operation and continued walking every day for about 3 to 4 hours. Make sure you ask your doctor about nerve sparing procedures, and your wish that if he feels that the nerves have been sacrificed to please remove them. He would likely do this anyway, but you want to get that straight before you go and get the operation. I was 58 at the time, and I healed up really well. I went into surgery in very good shape to begin with, that helped. After surgery in my situation, my PSA did not go to absolute zero but hovered around 0.03 and 0.04 and started to climb ever so slowly. So, a year after surgery I got 22 sessions of external beam radiation. Since then, I have been really good and my PSA has, been going down from 0.14, to 0.072, now it is at 0.056, and I am due for a PSA check in two weeks. I have prostate cancer in the family. My father passed away from prostate cancer and so did my grandfather. I have always been on top of the numbers every year as a young kid because of my family history. So I caught my prostate cancer very very early that I went to Urologist every year just to make sure. You are definitely in the right place as there is some great ions and experience here. Let us know how you make out .... the first couple of weeks are 'trying' but things come together after that I found for myself . Best of luck with everything. God Bless Sir . James