Post-surgery doctor visit: What questions to ask?

Hi Colleen . My journey. PSA went UP in 2018. I was 57. Prostate was robotically removed in 2019. Surgeon said bladder control and erections should return in 5-6 months. 1 year later no erections or bladder control so my dr said male sling would help so I had the surgery ..and still no bladder control. And the surgeon cut into a chamber of my penis, and sewed it up and scar tissue formed. And no erections at that time . And I had groin hernia fixed that year . And a lot of pain in genitals. In 2021 I had The AUS surgery and bladder control was better, but more groin/genital pain. In 2022 I has spermatic cord denervation for the pain but I still had more groin pain. And some partial erections but they were painful. So penile atrophy has set in without erections and a lot of pain, but PSA is undetectable. That is good news. So I have a new urology dr I see in a week. I Want to know what’s causing the pain. Nerve damage probably a dr said. So if you have any thoughts or any questions please reply .

@lee61, these are good questions for @anosmic1 to ask their surgeon after surgery.

Lee, did you have a prostectomy? I look forward to learning more about you and your journey with prostate cancer.

Ask Dr about PT.. physical therapy to help get bladder control back . And discuss getting erections back and do what dr says . U will be sore and not have any energy for months . I hope your PSA will be undetectable next test. Keep us informed on your progress and I will comment later on my journey..

I remember just before surgery, the surgeon asked: "What are your priorities here? Getting rid of the cancer, then incontinence, then sexual function?"
And I said "Yes.. that's exactly it".

Because it is.
Priority 1 is getting rid of the cancer. The rest is a wish list.
They really do try to spare the nerves where possible, but if the cancer is encroaching on one of the nerve bundles, they *may* get rid of it - but it's to potentially save your life. That's the important thing.
And we do have 2 bundles of nerves - one on either side of the prostate. They might not have to remove both sides. To ward off that bad luck, but a lottery ticket.

Just remember that because of the location of a prostate, they do have to shove everything else aside to get it.
Part of that is pumping carbon dioxide (I think) into the body to push everything else out of the line of sight. And part is just physically peeling the nerve bundles away from the side of the prostate, if the don't appear to be close to the cancerous cells.
And in doing that, the nerves can be bruised, which can cause the recovery to be no fun.

Just bare in mind that the surgeon has probably done hundreds - or thousands - of this particular operation. It's just a day at the office for him. So the chances of a trouble-free surgery are probably better than your imagination is telling you.

"That's the big thing to remember. It's natural to make up scenarios in your head that probably won't happen."

This is my problem right now. I have two months to dwell on it. However, I have two months to prepare my body as much as is in my control at least for the incontinence part of the question. I keep waking up in the middle of the night in a cold sweat thinking of waking up from surgery and being told those nerves I'm hanging on to hope will be spare were contaminated and had to come out.

It's hard to keep the mind from fixating, but I'm talking to those that know and did it. My logical side totally agrees with your statement, but the less logical side is beating the snot out of logic currently :).

My surgeon before hand said he would have to cut wide on one side. I received follow-up information; however, it wasn’t from my surgeon. I was a little surprised but that’s how it worked out. (This happened during high concern COVID period.)

@anosmic1 to the great questions listed, you might want to ask your doctor about adding the PSE blood test. Here is a comment made by the VP of Clinical Diagnostics at Oxford Biodynamics in a reply to patient on Mayo Connect which includes biological re-occurrence:

"Just to clarify, the EpiSwitch PSE test analyses immune cells in the blood that have been at interplay with prostate cancer (or not). Your PSA value only makes up a small portion of the results of the test. There are other very informative biomarkers assessing the presence or absence of PCa included in this test. So yes, EpiSwitch PSE can still be used with a very low PSA score, and can still detect prostate cancer without PSA shedding. Therefore, the test can be used before, after and during treatment - even after complete prostate resection. In your case, a 'low likelihood' result could potentially help you avoid things like PSMA scans if your PSA indeed rises over time. A 'high likelihood' result could be indicative of recurrence, irrespective of low PSA."

That's the big thing to remember. It's natural to make up scenarios in your head that probably won't happen.
You'll read all sorts about side effects, recovery times, complications etc.

The thing to remember is this: When you read "You might have this" or "You might have that" or "I had this".... it's *possible* outcomes.
Take note of "could" or "might". It doesn't say "will".
When you read may, could or will, it actually means "IF this happens, don't worry... it's normal".

I had that experience with the biopsy. I read all sorts about bruising, swelling, not being able to walk for days.... Nothing. Bleeding stopped with hours & nothing else happened. It's the same with the surgery recovery experience.
Things might happen or might not. Totally different for everyone. We're not robots.
Even the robotic surgery wasn't done by a real robot. What a rip-off. Surely the robot from Lost in Space has nothing to do....

But take any & all experiences from others as "If this happens, it's ok... it happened to me too."

My experience has been better than I anticipated. I've had no pain since the surgery. The hardest part was the wait for surgery and the thoughts that ran through my head. I'll learn more on Friday but so far things have gone as I had been told. If you need another resource, I found the group at AZ Prostate Cancer Coalition very helpful.

I had mine almost 5 months ago. Adding to @peterj116 excellent list above, here's my 2 cents:
-- for cases similar to yours, what's your odds of reoccurrence?
-- discuss pathology of prostate lab report: did Gleason score change? Any cribriform or IDC present?
-- discuss your surgery. Anything you should be aware of that will affect your recovery.
-- current state of your continence. Any actions required? PT referral?
-- current state of your sexual ability. Any penile rehab recommended? Being proactive, what works? Low dose sildenafil or tadalafil? Vacuum device?

Best wishes.