A friend tipped me to this site AFTER my RP. (I'd read everything my surgeon gave me, plus googled a ton of stuff, none of which made any sense to me. My MD GF, GP, and surgeon all strongly pushed RP, so I did it.) I've learned more on this site in 9 mos than I did with all the above in a year. Thank you.
What I'm struggling with (and I hesitate to say that given the awful struggles I read from other guys) is whether I did the right thing. My first biopsy was 3+3 so was AS subject to a confirmation biopsy in 6 mos, which came back 3+4. I thought about asking for a second opinion but was told the biopsy was pretty conclusive. So, I did it. I've struggled w SE's for 26 mos now (didn't help that the PT section of the hospital was essential shut down during covid...). I decided to pull up my final path report to see if it could nudge me one way or the other. It makes me think I should have waited. Only 10-15% of prostate involved w tumor, and only 5% of that was 4.
My apologies if this is taking up bandwidth, but it's something I'm having a hard time letting go of. Thanks in advance.
I would urge you to let go of perceived regrets about the past, as well as imagined futures, and live in the present. Being human, it's almost impossible to do. I practice mindfulness every day to help me do it, but it is still a struggle. In most cities, there are groups where you can practice those skills - and I very much think it is more beneficial to practice in a group setting than doing it alone.
That was a pretty good path report. Has your psa been undetectable since?
yes. That’s what I struggle with. On one hand grateful I’m very unlikely to have reoccurrence. OTOH, I suspect I could have had (fairly) similar odds with different treatment.
SEs. My surgeon said 99% of his patients were continent at 6 mos and 87% were potent at one year, and given my age, physical condition and current potency “You’ll be fine”. I feel misled. I suspect his stats are unreliable. I found more facts and honesty here.
I think TA and Scout’s advice is spot on, and is what my GP and GF say too. But there’s (at least for me) a process for accepting things that I have to work through first, and I just passed the two year mark where they are saying “what you have is what you’ll have. “. So that milestone, assuming it’s correct, means I’m two months into that process. Early days.
I tell people getting old is all about managing loss. So I’m used to that. Just hadn’t expected this one. Thanks to all for the advice and support. This is not something you can casually talk to friends about
Lotta guys here much worse off. My thoughts and best wishes are with them.
The path report is good. About side effects, i read that some recovered erection even after more than the 2 years mark. I m dealing before treatment and going thru depression that also doesnt help potency. If the blue pills works, better take these ones as antidepressive ones. I m 57 and facing surgery. Gleason 7 (4 cores/12) , psa 4.7. I really hope i will do the right thing and hope that i choose the right surgeon.
I have 1 core 3+3, 3 core 3+4 and 1 4+3. My uro said to consider the entire like a 3+4. With your treatment you could keep your prostate, but what about the side effects ? urinary and sexual ?
I agree with T-A, mostly. You made the best decision you could with the info you had at the time. You can't undo that decision. Second guessing is unproductive.
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"Location of Extraprostatic Extension: Right posterolateral (neurovascular bundle)"
This tells me you were going to have do something. Once PCa gets out of capsule I think it requires a response.
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I think your thoughts should be focused on what you can do to deal with the side effects you are experiencing now and develop a plan for what to do next if you get a reoccurrence. Lots of levers left to pull.
Those are all things we can and will try to help you with.
I would be happy to brainstorm with you or just listen if you like.
Why do we have eyes in the front of our head and not the back? So we can look forward, not backward. I used to think I chose wrong but it did me no good. It won't do you any good either.
I also have regrets about Doctors I trusted at beginning of process. Gleason 10 and had RP. I don’t regret the surgery but do regret not getting to a dedicated cancer center sooner than I did with a better care plan. Ok, set aside all regrets and focus on what you can do today. I say that prayer every morning when I wake up and see the sun rising. I’m now on triple therapy and responding well. My guidance would be to find a dedicated cancer center (I go to City of Hope in Newnan GA), obtain a care plan from them and then focus on the future. Enjoy every day as if it were your last. The future isn’t promised to anyone.
…take a look at this debate. It really lays out the pros and cons of both surgery versus radiation. I had a radical prostatectomy under the process that I had a contained tumor. During surgery it was discovered that I had four different conditions, and that lead to salvage radiation. Take a look at this and see if it helps.
I have often wondered as well whether I did the right thing. Worrying about the past doesn’t help unless you harvest your mistakes and seed the future. But to make best use what you are developing, you must have the knowledge that allows you to make the best decisions going forward. That is why, as you mentioned this site and additional reading or critical.
…don’t beat yourself up too much. I flogged myself. for a solid year regretting a lot of what was done Try to identify what went wrong and then apply those lessons going forward.
Two things I don’t see in your background that you may want to consider as you develop your path forward plan. One is genomics a germ line testing. I don’t see you decipher a score to understand what cell type you had. See if this helps
The other one is what most bothered me about my treatment and the support or lack there of from my medical team was the whole issue of a rectal dysfunction. Take a look at this. There’s a good chance that you will live to a ripe old age.As you recover sexual function is going to return as an important part of your life. If you don’t take steps, now, you lose more and more abilities in the future. Here is my woulda-could-ashoulda list of what should have been offered to me as well as steps that I should have taken much earlier. I am now six months post implant, and I am recovering. I am so glad. I did not wait one week longer. I should’ve acted much sooner.But I have preserved a lot of function having acted when I did.
…in the end, there’s a Concept that gives me some solace. I always try to say to myself that I acted late, but not too late. See if this makes any sense.What she should therefore resolve it should never be too late to ask. Good luck. Richard.
PS let me know if you’re interested in more information on Erectile dysfunction. I can shoot you more information. Best and sorry for the voice to text. I’m sure there’s lots of mistakes in this, but I am traveling.
No matter what treatment you chose, none have guarantees......you can read of many struggles men have had after radiation too !!! I know 3 men who have had RP, and none expressed regret.....just lucky??? None had RP at a cancer center., center of excellence, etc.
I’ll keep it simple: What side effects are you experiencing? If it’s ED and your prognosis is good, I would get an implant if rehab and pills don’t work.
The past is gone- that’s obvious, but many solutions abound.
My situation was similar to yours (except I was G 3+4 on presentation). Of interest to me is that your biopsy showed extraprostatic extension, which of course is a high-risk feature. However, the post-surgical specimen showed clean margins. Based on the pre-op assessment, I don't think many surgeons (OR ROs) would have kept you on AS. My pre-op biopsy was read as "suspicious for extraprostatic extension" (>75%) but like you this was NOT found in the specimen post RP.
Tall_Allen is right (as per usual). You could argue that you might have done better with radiotherapy, but this is just a guess. I also did not consider radiotherapy. I had reasons, but nothing that justified my NOT getting a consultation with a RO. As it is I'm out not quite 5 years, no detectable PSA (so far) and doing well. You probably will do well too.
With the nerve bundle affected, I assume that it was not spared. That is probably the reason for your ED SE. Unavoidable and good thing you got it before it got to the seminal vesicle on that side.
Good advice here from Tall_Allen and others. I made some hasty decisions about surgery in my own case, because the cancer was about to (and did) escape the prostate. I had a series of post-surgery complications, leaving me with plenty of time to ruminate about my poor choices. But as others have said, what's done is done, and you made the best decision you could with the info that you had at the time. Don't beat yourself up. I definitely know that is easier said than done. But you can see that you have a lot of company here from men who might well make different choices if given a second chance.
I had a post RARP path rep similar to yours. I was Gl 8 with 10/12 cores affected based on biopsy but the 3 Gl 8 cores were only 5-6% affected. Post RP I was 42 gm organ wt , 8 nodes neg, Gl 3+4 with 14-17% prostate tumour and Gl 4 being 5-10% of the tumour. Also a focal extra prostatic extension.
My PSA 2 months after op was .08 so my Dr has me doing another PSA after 3 months (end of next week). Hopefully it will be non detectable. Still worried about the focal bit left behind.
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