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

Read up on Proton Radiation. It is better now that 15 years ago when I had it. My buddy had his removed when I had proton radiation and he wore diapers for over a year and took shots for ED.

@dmedlen
Did your buddy have photon radiation? Must admit that is an extreme case. I’ve heard from many people that have had SBRT and IMRT and There’s a wide range of results from no problems at all to a small percentage that have this extreme issue like you describe.

As for proton 15 years ago, that’s really not significant when you look at the history of it.

If you watch the 2023 PCRI Video and see Dr. Carl Rossi talking about radiation you find some interesting things. For one he’s been doing Proton radiation treatments since 1994 when they built a building for the machine in San Diego. The first patient was the person that invented it, He lived to over 100. He has done Proton radiation on over 13,000 prostate cancer patients.
That video link is Starting at 3:38:45

@tuckerp
While getting your testicles removed is an option, Most people are not on ADT for life. Have your testicles removed and you are effectively on ADT for life unless you get testosterone injections.

Here’s a link to the experience somebody had removing their testicles, not a positive life after.
https://connect.mayoclinic.org/comment/1526325/
I think I had five holes after the robot assisted prostatectomy. Other people have mentioned having five as well. I guess it just depends on the Surgeon, I suspect if they use fewer holes, they must have a larger middle opening..

My buddy had removal, not proton radiation. Thanks for the video

At 57 you are probably on work insurance. Determine what is covered and if you are willing/able to spend $100K+ out of pocket before selecting a treatment that gets refused. Most commercial insurance does not cover Proton or focal therapies for prostate cancer (yours may therefore check). There are only bad choices, so you need to choose the least bad for your goals. Active surveillance and focal therapy have the least side effects but the highest rates of progression / reoccurrence. On the plus side neither eliminates a later choice of surgery or radiation unless metastasis occurs. On that note, if the PSMA PET shows metastasis than surgery is out. If choosing surgery remember that the skill of the surgeon is critical for reduction of side effects of ED and incontinence. Get all the information you can and make a wise choice. Check the posts on nerve sparing RP. It seems that it takes a year or two to regain function if it comes back.

I was also diagnosed with unfavorable intermediate-risk prostate cancer last year. A GPS test indicated that my cancer had aggressive biology. I chose surgery because both surgeons and radiation oncologists advised that my pre-existing urinary symptoms due to BPH (such as a weak stream) would likely be significantly worsened by radiation.

Seven months after surgery, I still experience incontinence despite diligently performing pelvic floor exercises under the guidance of a highly experienced physical therapist. Outcomes and side effects can vary widely from person to person, depending on factors such as the type of surgery (nerve-sparing or not), the condition of the prostate before surgery, and the skill of the surgeon.

@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.

After surgery patients next immediate concern is having a catheter for a very short time. After successfully getting through the surgery it really is something not to get to concerned with.

I had my catheter in for 11 days because of a holiday weekend at the end before my appointment to get it out. I went for my Cystogram the same morning I had my catheter out. The cystogram in effect is to check your seal of the reattached urethra to the bladder for leakage. The cystogram was fairly quick, your catheter stays in place, they have you drink and the radiologist and Doctor watch real time to see basically your surgery reattachment has no leakage. There is no pain to it. Then I went upstairs back to the Doctors office to get the catheter out. I needed to wait around 30 minutes for the Cystogram results to get ready and conveyed to the Dr’s office. I was scared thinking the removal of the catheter would be painful and remember worrying right up to getting onto the table and laying down and then suddenly the nurse says okay, and I asked was it out and she said yes, I never felt anything. Not knowing what my continence level would be and again concerned, I was well prepared when I went to get the catheter out. I had brought loose regular jockey briefs( I had always worn loose boxer briefs) to put on that I could place a mens pad inside like women do for their periods. I also brought a mens pull up diaper that I could use. I asked the nurse what I should use right now after the catheter came out going home and she said the diaper was probably the easiest and it was, I just stepped into it. Now not knowing what was going to be happening I switched to the loose jockey briefs and placed a mens pad inside. Then it was no longer loose. The larger jockey size was because once you put the pad inside , it became crunched against your jewels and a regular fitting brief would have crushed me. At night I did put on the diaper. Now all these precautions ended after two days when I definitely knew I was not leaking and I felt safe just returning to my regular boxer briefs.

Now while your catheter is in, just get a regular plastic size mop bucket that you can place your catheter in at night when you go to bed. It sits on the floor next to you in the bed. The catheter is sitting in the bucket on the carpet below your level in bed so it drains. I actually would just carry the bucket around the house with me going up and down the stairs and sit it down by me on the sofa. I actually never used the smaller catheter bag you could switch out. I always used the big bag even when I left the house. I would wear surfer like longer shorts or bermuda type shorts that dropped to your knee. I then had a plastic shopping bag like a trader joes, or something similar that I could place the catheter in that I carried. It just basically while outside anywhere it looked like I was carrying a shopping bag. When I went walking up and down the street it again looked like I was just carrying a bag. The catheter tube would just come out barely under my shorts by the knee and loop right down into the shopping bag. It was barely noticeable. Also take that shopping bag with you when you get discharged from the hospital with the catheter.
I just wanted to share this detailed post with anyone considering surgery as an option from my experience and what I believe are major considerations in choosing a surgeon.

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