Diagnosed today w/ PCa. Seeking feedback w/ treatment I think I want

@wheel1 Thank you for such a detailed summary of your experience!

@soli How was your recovery right after surgery? I.e. multi day hospital stay, pain, catheter, activity level/energy level, infection issues etc. Thank you!

I was Gleason 8 after biopsy, PSA 4, PSMA PET negative out of capsule, medium to high decipher 69. Now after surgery my Gleason was lowered to unfavorable Gleason 7 (4+3). I went for two Surgical consultation’s and two Radiation consultations from different major hospitals.

If you are considering surgery this post is my experience and knowledge and opinion gained from the cancer journey and it’s aftermath. I am 18 months post surgery with PSA level considered unmeasurable.

The window for Surgery typically closes as you approach 75. Surgery is not something that can happen later so if you are debating between Radiation and Surgery your age and current overall health condition is an important factor. Remember although you might feel at 69 you are in fine health, but suddenly in two years you are not in good health and even though you are not 75, surgery has been removed as an option. That is important because if you undergo Radiation at say 69, and the cancer returns, salvage surgery regardless of your age is not done by most surgeons due to the risk, although it is done by a few highly skilled surgeons but not many, the age and health factor regardless comes into play even for the surgeon that can do salvage surgery. You have probably heard that you can still have Radiation after surgery if the cancer returns but not surgery after Radiation. This keeps Radiation as a back up. A key factor in choosing your Surgeon during consultation’s, if going with Surgery is to be aware that technologies and techniques are advancing in the field. The most up to date and advanced robotic surgery is done with the DaVinci single port robot. If your surgeon is not using the latest DaVinci Robotic model it does not change his ability in performing an outstanding surgery, but it can affect a quicker recovery and allow state of the art surgical techniques that can alleviate the severity of possible side effects. Also even if a Surgeon wanted to do a nerve sparing it might not be possible. I am approaching 73, fully erect, penetration, after Viagra and no incontinence. These are some questions you could bring up in your consultation.
The number of Robotic Laparoscopic Radical prostatectomy’s he performs.

Whether he uses a DaVinci Robotic single port (latest) one incision for entry or makes the 3 to 6 incision entries using the older DaVinci models. The single port barely leaves a scar and you can leave the hospital the same day as your surgery. My surgery was in the morning 7:30am and discharged around 5:30pm. I am now 18 months post surgery and the single tiny scar is almost unnoticeable.

Whether he performs nerve sparing.

Whether during surgery while you are on the table he will send the sliced prostate bed tissue and lymph nodes immediately to Pathology for inking and staining to rule out whether the cancer has left the capsule even if the PET says it had not entered the bed or lymph nodes and is localized to the capsule. Then if pathology reports positive margin in the bed the Surgeon can go back in deeper while your are on the table to try to eliminate the positive margin. This happened in my case adding an additional two hours to my surgery with the initial positive margin coming back. Even my surgeon was surprised from his visual of inside me and the of hundreds of surgeries he has seen, and said on occasion he gets surprised. That is even though everything like the PET suggested everything was contained. Most surgeons don’t do this, and ultimately at your post surgical appointment you are told, sorry there was positive margin. In mine at that post appointment I was told final pathology was negative margin. This can really mess up a surgeon’s schedule needing to go back in for several hours that was not planned and typically with a second surgery for the day that was waiting getting substantially delayed for the day not only adding that much extra time to the Surgeon’s day. This is a major reason they don’t.

Whether he leaves intact and does not cut the puboprostatic ligament to maintain urethral length which substantially improves the likelihood of minimal post leaking if none at all. This is very important and most surgeons are not trained in this technique. It is called Retzius sparing. The surgery in reattaching your urethra to your bladder is a significant part of the completion of the surgery. In this Retzius sparing technique the surgeon accesses the bladder from behind the prostate allowing the ligament not to be cut, and takes a skilled surgeon in this technique. You are positioned differently then in a normal robotic prostatectomy because of coming in reverse. Most patients comment on the loss of penile length. This is typically caused by the need to cinch up and reattach the urethra to a bladder that had its Puboprostatic Ligament cut and not where it was. Almost all Surgeons cut the ligament to do surgery and it is easier, however the new surgery procedure, not really new, it has been around a number of years now having come from Europe is that they go into remove the prostate doing surgery from coming in behind the bladder, to gain access to the prostate and no need to cut the ligament . Not only as previously reported that you do not lose penile length as the reattachment is right back to the place where the stable bladder is still positioned and it was cut, but it seems according to most literature on this most patient’s have almost immediate continence. These certainly are two major concerns of patients I always read about regarding surgery. The third concern is the sexual function more involved with nerve sparing and alot of that involves a surgeon’s skill. Even if the cancer has seemed to leave the capsule, a surgeon can spend extra time delicately getting to a negative margin and as in my case , nerves spared one side, half the other and 18 months post surgery, early 70’s, I am good to go fully erect penetration in the morning on an empty stomach after 4 pills sildenifil (20mg a piece) total 80mg and waiting 75 minutes. Many people don’t realize or even know of this approach. This really shows how important it is to research your surgeon and see what he does. You really have to look for this specific surgeon and consult with or call around the major hospitals to see if they have surgeons doing this technique. This still by far is not the most common surgery technique but is gaining substantially more traction each year as newer surgeons who are staying up to date on the latest technology and techniques. It will likely become the standard over time due to the success in reducing side effects. Many major hospitals have a surgeon trained this way, it’s just finding that Surgeon. It’s like rectal biopsies were once the standard and are slowly becoming less and less as more urologist’s have become trained to do perianal biopsies.

@wheel1 "The window for Surgery typically closes as you approach 75. "

That's what my surgeon told me, & I wasn't having any of it. I had the surgery just after my 76thth birthday & had zero complications, no pain, & no incontinence after catheter removal (also no pain). Just five tiny scars across my beltline which have since totally disappeared.

For me, a non-event.

Hi,

I have a similar prognosis GG2 (3+4), Decipher 0.87, 5/25 positive cores /w cribriform and borderline IDCP. I have a few suggestions (all of which I have done):

1) Get a second opinion on your biopsy from Dr Epstein. He is the leading expert in the field and can give you definitive read on your biopsy (in most cases you will see a change I think... mine was upgraded). It's cheap and relatively easy to do. He has his own company doing the analysis now.
2) Get a decipher test to determine need for ADT. It's really designed for that purpose and will give you a much better idea about your prognosis.
3) Consider joining a patient advocacy group (eg: Ancan). They are great for helping you deal with a very complicated decision making process. They can help you both on the treatment decision and dealing with the anxiety of a cancer diagnosis. They can normally pair you up with a patient who has gone thru the same and likely with same Dr so you have a very good view into what to expect. It has helped me immensely.
4) IMO the best treatment for BCR and minimal side effects is MR Linac SBRT ( with ADT if determined by decipher score). I looked at 1) Tulsa Pro (too high a likelihood of BCR) 2) MR Linac (non invasive good BCR and side effect profile ) 3) HDR Mono Therapy (good but more invasive) 4) HDR Brachy boost with IMRT (good for more advanced disease).
5) I would first try to find the right Dr you are comfortable with who has expertise in the option you are looking at (eg; Dr Kishan @ UCLA for MR Linac) at a Center of Excellence.
6) If you decide on MR Linac get a Prostox test to determine likelihood of GU side effects.
7) If you have a family history of PCa consider a germline test to eliminate presence of PC genes (BRA2, etc).
8) PCa is a slow moving disease so don't jump to any conclusions and treatment decisions because what you decide is a lifelong decision (in the ideal case something you don't have to revisit) so do the homework to make sure you don't have regrets and can live with the decision.
9) Drs like all humans have biases mostly towards the treatment they specialize in so seek out more than one opinion, including advocacy groups. AI (try Claude or ChatGPT) can help alot in the decision making process as it can be a great decision support tool and give you a more independent analysis.

My case is a bit more complicated as I'm self pay (64 y/o no insurance) and am an US expat but have done extensive research to get to a decision.

Wish you the best of luck in your journey.

Steve

@marlon Thank you for your response. In all honesty, I have been banging the keyboard on my computer this evening with a vengeance. The more I look into this thing, the more I start to warm up to removal. But the whole catheter thing is not appealing but I guess I would need to deal with it. Hearing that you have no regrets is helpful so thank you.

@thig350

I was older than you, 69, when I had five sessions of MRI guided SBRT completed in 2023. My PSA was 10.2 with a gleason 3+4. I had no ADT. As of today, no new symptoms. Erections are a little softer. Urine flow is better than good. I try and listen to my bladder to go to the bathroom relatively quickly when I get the urge but so far so good.

You might want to do a telehealth second opinion with a center of excellence.