Appointment with Dr. before surgery

You definitely need to speak to the doctor, even if it is in email, about the nerve sparing. I assume from what you’re saying that that was not discussed at any point.

You definitely want to get his point of view about whether he will be able to do that or if there are some complication that will make it a problem.

My prostatectomy was 15 years ago, so that was not even a consideration at that time.

We had only 2 consultations. The first one was more of "second opinion" type and no details were discussed regarding procedure itself (how is it done ). We were advised to consult RO and also person who does focal therapy to consider all of the available options.

Our surgeon was out of office for 3 mos so we made app. for August - the first available date after his return. Second consultation was 7 days before surgery where we discussed nerve spearing and size of the prostate (it was really big) and how urethra will be attached back to the bladder neck, how is gland removed, possible lymph node recession, etc etc. So yes, he explained his plan and also possible obstacles and how they can be mitigated. At the same time we were informed that some things are seen only when he is "inside" and while looking through "microscope" probes and that plan can change if he discovers new findings.

Regarding ED and incontinence, one has to have in mind that it depends of so many other things than just surgeon's expertise. There are no guarantees there BUT in majority of cases those issues resolve with time. However, if nerves are not spared, problems with ED could be permanent. If your prostate is very big, it is very tricky to spare the neck as intact feature and than there could be problems with incontinence. Good surgeon knows how to fix shortened neck during surgery, for example. About 95% of patients regain full continence during the first year of recovery. ED needs up to 24 mos for recovery if nerves are spared.

So, the most important question is - do you have very experienced surgeon with over couple of thousands RARP procedures done ? If yes, you are probably in very good hands.

Wishing you super successful surgery and outstanding results 🍀🍀🍀👍

You asked for our experiences with the surgeon before the surgery. I'm happy to share my experience with you, but I'm not suggesting you should do what I did, but rather I'm simply sharing my experience. That said, I only had one appointment with my surgeon before surgery, and it was a tele-visit. I had already researched him and the hospital so I had a lot of confidence in his technical ability and the quality of the hospital. (Speaking only for myself) I didn't feel I was in a position to really evaluate whatever he told me about how he was going to do the surgery, so I simply trusted the very high reputation of the surgeon and the hospital to do a high quality job performing the surgery. Nor did I ask him to go through the MRI or test results with me in detail, although we both referred to the results as we discussed what my condition and what he recommended regarding the surgery. But I should note that my biopsy and MRI indicated a single 3+4=7 lesion that appeared to be fully contained within the prostate, so my case was somewhat straightforward in my mind. Rather I focused the conversation on his evaluation of my suitability to have the surgery, my odds of being incontinent and/or having ED, and whether he thought he could spare the nerves (knowing things could change once he got in there). He answered all my questions, and with that I was ready to proceed. I first physically met him the morning of my surgery right before the surgery. I'm now at 14+ months and my recovery has exceeded my expectations. Again as I said above, I'm not suggesting this is the preferred level of communication with ones' surgeon beforehand, but rather this was my experience. Best wishes.

There was no mention in your description of alternatives. After the procedure by 2 weeks penile injections have been recommended to prevent muscular atrophy. Apparently a shock to the system is often a cause of post surgical ED independent of the nerve sparing success.

Animate:
I defer to the response by retireditguy.
It sounds to this layman that you are very naturally anxious about your diagnosis and treatment; and rightly so. My feeling is that you are "down in the weeds" a little bit.
I met once pre-op with my surgeon at Johns Hopkins and we did not not examine the biopsy results or PSMA scan results in any detail. I did ask for a JH review of the biopsy and PSMA scan, which were performed and interpreted at a different hospital.
I strongly suggest, since you have the time prior to surgery and clearly the interest in preparation, that you request a referral to a physical therapist who works with pelvic floor therapy and begin exercises for kegels and post-op urinary continence and begin that training pre-op. It was extremely helpful to me.
I focused on getting ready for surgery physically and mentally, which were activities somewhat under my control.
Best wishes for a successful surgery and recovery.

Is the american urological association has a very nice state-of-the-art recommendations that surgeon should give to patients I did not get one and I don't have a link right now, but I think you could look it up. I think it's really good to read it. My surgeon kind of blew off incentive didn't spend much time on it, when the American urological association says the majority of men take up to 9 10 11 months.

I meant blue off inccontinence he told me lots of guys turn a corner in 2 or 3 months. He should not have told me that .so.e certainly do and I am happy for them. However the majority take much longer like me

Thank you all your for kind responses and warm wishes.

My doctor only read the biopsy report and mentioned that on one side the odds of nerve sparing were good but on the other side he would only know until surgery day. He did not walk me through why he was interpreting things this way, nor did he go through the MRI images to visually explain what we are dealing with.

My doctor has a good reputation, from what I have researched, although I have not been able to find a figure on number of procedures performed. I would not feel comfortable asking him about this but maybe I should, in a subtle way.

Thanks for the suggestion on starting pelvic floor exercises now, weeks ahead of my surgery. From comments in this forum, I actually read this same recommendation and I have now started the exercises with therapist guidance.

I appreciate your helpful comments and will try to request an appointment with my doctor before the procedure so that he can walk me through a more detailed plan of what we can expect. I believe that this will be for my own sanity as I prefer to know things realistically beforehand and avoid unexpected surprises later.

Thank you.

I was worried about this before my procedure too. My surgeon was very clear with me and said, “I’m going to try to spare your nerves, but once I’m in surgery, my priority is to cure you of cancer.” In the end, I lost one side of nerves.

Before surgery, to improve my chances of sexual recovery, he prescribed me tadalafil 5mg daily, which I will always remain on, just to keep blood flowing properly. If you have not already, I would ask your surgeon about starting tadalafil before surgery as well. I also made a point of doing Kegels whenever I was sitting at my desk, in the car, and so on, which I think helped with incontinence.

For ED, after surgery, I started using the Soma Therapy OTC system: https://augustams.com/product/soma-therapy-otc-manual-system/
for about 5–10 minutes daily. It’s been helpful for keeping blood flow without using bands, basically just exercising your erection. For sex, I’ve had better results with the Vacurect pump: https://anactivelife.com/products/vacurect-1002-otc-ved-pump
since it seems to hold an erection longer.

I also have a meeting scheduled next week to talk about Trimix injections. I’m still hoping for some natural recovery, but honestly, I don’t know if that’s in my future. Wishing you the best as you go through this.

Just remember that whether you ejaculate or can get an erection capable of penetration, you can still have orgasms. Anything that increases blood flow is good. If all else fails, you can have an IPP implant. I got one since ADT caused ED. Don’t worry about the future, just, eat well, exercise and heal.