Treatment Options Analysis Paralysis

[BMT07]

Currently suffering from "analysis paralysis" as I go back and forth between radiation (Cyberknife) and Surgery. I was set to go with Cyberknife at Georgetown which is a high volume center with tons of experience and then my Decipher test came back as High Risk which adds 6 months of Orgovyx to the equation. My biopsy showed 3/12 cores with cancer, 2 with 3+ and 1 core 3+4 (4% of the sample). No apparent lymph node or other structures impacted. I had my biopsy and MRI at Johns Hopkins and went to Georgetown for the expertise in Cyberknife. I'm doing a consult this week with Dr Allaf at Hopkins who is recognized as one of the best surgeons and I spoke with his nurse today who went through the pros and cons, but stressed the benefits of surgery. The path with surgery wouldn't include the hormone therapy and would check my PSA every 3 months afterwards and then do radiation if I have a recurrence. I'm confident I'll be in good hands with Dr Allaf, but am scared of the side effects with surgery that can't always be controlled even with the best surgeon and I must balance this against the side effects I could have with Orgovyx. Appreciate thoughts, advice and input on making this decision. Thanks in advance!

[Tall_Allen]

What side effects do you think you might have with Orgovyx after 6 months?

What side effects do you think you might have after surgery after 6 months?

[BMT07 in reply to Tall_Allen]

Good questions: At 6 months likely: 1) Surgery - ED and Incontinence 2) Orgovyx - it is a 6 month regimen and suppose to wear off quickly so don't expect any real side effects. Some can gain weight on it and suffer hot flashes and depression and ED while on it, but all are supposed to wear off quickly when you stop taking the pills. Putting it this way makes me want to go the radiation/orgovyx method.

[maley2711 in reply to BMT07]

Radiation can aalso have side effects....for some reason, not discussed as much as surgery SEs. Have you specifically Googled for this topic......wouldn't tkae long to start to get a better picture.....as you know, it's all about probabilities. How do they arrive at 6 months ADT if you are now considered high risk...the calssical high risk definition would suggest 18+ months ADT with radiation....though perhaps differnt guidelines for SBRT/Cyberknife?

[CarlosBrasil]

I had the surgery, robotics with the best I could find in my country, and afterwards I ended up having to do radiation also, for salvage. History is in my bio.

So I had, and have, all SEs from both. Looking back, my experience is that the surgery was the worst, from the recovery process to the SEs. I wish I had choose the RT instead.

Anyway you go I hope you the best.

[Inspjones]

Dr. Allaf is one of the best RALP surgeons in the world with thousands of surgeries under his belt. You have to be careful when looking at statistics, as they include the bad surgeons. You also need to consider that the RALP software and cameras are constantly being upgraded, which has not been taken into account when looking at side effects from studies done 20 or even 10 years ago. Finally, new RALP techniques are regularly being discovered which you rarely hear about. If you have a world class surgeon at a world class institution (like Johns Hopkins) your chances of adverse side effects are minimized. I had zero incontinence after my RALP with Dr. Allaf four years ago. When I went to get the catheter removed, the nurse somehow knew that I wouldn't need urine pads, and almost laughed at me for bringing them. My erectile function also came back to baseline within one year. Hopkins has an excellent nurse practitioner who can help with penile rehab if needed. My PSA is still zero and the stress is largely gone. Recommend you take your time and do your research. In the end, you'll make the right decision for you. Best of luck.

[BMT07 in reply to Inspjones]

thanks for the great info

[EaNa]

I was in your shoes trying to decide 2 yrs ago. I decided to go with the RALP first and salvage if needed later. My recovery from the RALP was swift, I was active and about in a couple of weeks, I'm 66. Worst part was constipation 3 days after surgery and the 10 days w/ the catheter which is tolerable. Regained erections in a year. No issues of any kind with incontinence. PSA was undetectable for a yr after surgery then started rising. At 0.2 now and starting salvage RT. My biggest concern was colon problems after radiation as I've always been sensitive there. I was also concerned that surgery as salvage after radiation was difficult, but this may have been lack of better information. My research indicated that side effects develop more quickly with surgery with recovery spread over time (which I think is preferable if it alone is successful), with radiation it's the opposite. I think it's a game of pay me now or pay me later. In my case, I get to sample both treatments. Would it have been better to just go for the RT? I'll never know. You make a decision and live with it.

[BMT07 in reply to EaNa]

Thanks and sorry you are having to go through more treatments. I started the Orgovyx yesterday and will see how that goes and I can still choose surgery since the Cyberknife treatment won't start for 2 months. Good luck.

[EaNa]

Maybe you can ignore the statistics as someone else suggested, but having a surgeon that has done thousands of RALPs I would ask what his personal statistics are. Then compare that to general statistics for each treatment? When it comes to statistics there are Nomograms based on statistics that can be used as long-term predictors of outcome for surgery, I don't know if they also exist for RT. Ask your doctors.

[Smarks42]

I have Gleason 3+4 with some “mild” EPE, and no sign of metastatic disease in my scans. Was scheduled for RP but decided to cancel and go with RT. But first I’m waiting for my Decipher test to come back. My understanding is that in my situation, Decipher is currently the best predictor of metastasis down the road. If mine comes back high risk like yours, I will most likely go for aggressive treatment RT with hormones. I doubt that I’d go back to the RP choice because of the greater likelihood that I’d need salvage radiation in the aftermath anyway. Best of luck to you! I know first hand the agony of decision paralysis.

[Coggeshall]

Hi I was going to have radical surgery to remove my prostate.I had a further meeting coming up in 3 weeks time with the surgeons and the radiotherapy guys.During that time I found out as much as I could about the pros and cons of each treatment.I went to the meeting cancelled the surgery and opted for radiotherapy 37 sessions with a further 18 months ADT as I had already been on it for 6 months.The surgeons promote surgery obviously it’s their job.Thoroughly research the side effects of surgery by people who have had it.I’ve recently finished my treatment so am waiting to see how well I recover.Don’t get pressurized into anything do your own research.

[BMT07]

I'm still early in the Orgovyx since I've had 4 doses so far, but no side effects yet. I spoke to Dr Allaf who was very nice, but after that talk I've decided to go with the Orgovyx and Cyberknife and I'm at peace with my decision. Now I'm focused on working out daily and sticking with the program. Thanks to everyone for your input and advice. Greatly appreciated!

[frankie08033]

Same situation here in Oct.2022. Went with Surgery in Nov.2022 at UPenn. Incontinence was an issue for 1st 2 months but that is back to normal now. ED is a work in progress but there has been improvements. Drs said that could be a 6-18 month recovery so I’ll keep working on that but happy with my choice. As many have said, whatever you choose don’t second guess, it will be the correct decision.