Knowing ASAP if with recurrence - Your Thoughts, Please!

Rose, I agree with the other comments, no two people are the same and each man will ultimately need to move forward with the treatment plan best from himself and his loved ones. For myself, I went with a robotic radical prostatectomy with nerve sparing at a center of excellence. I had my surgery in November 2022 and was 56, healthy, positive attitude with life, and was wanting another 30+ years of living with my wife. I did a significant amount of research before my first appointment to ensure I went into the the conversation with a baseline of knowledge. I decided on a robotic RP because of several reasons: (1) I wanted to fully understand the level of cancer that was in my body (post surgery pathology) and not rely on imperfect imaging tools and biopsies. (2) Cancer is so complicated and you never really know if the prostate cancer is completely gone - A RP does not guarantee all the cancer is removed, but in my opinion, gives you the best chance to address the known cancer. (3) A radical prostatectomy removes the prostate, seminal vesicles, and an assortment of pelvic lymph nodes versus radiating areas of concern or suppressing the cancer. (4) I did not want the possible side effects of radiation. I can handle the potential side effects of the RP (incontinence, impedance, infection), but I did not want to add in another variable like radiation.

Everyone is different when coming back from a radical prostatectomy. However, if you choose the best possibly doctor at a center of excellence (like Mayo-Rochester), your chances of recovery are very good. For myself, I am a bit over a year out from surgery. As far as I know, cancer has been removed (can never really know) and follow up PSA levels have been undetectable. Thankfully, incontinence and impedance were minimal post 3 months. As with others, I was methodical with my Kegels and getting plenty of sleep after the surgery. Also, stayed active during the recovery.

Please note - I am completely biased based on my experience with the RP. Each individual is different and treatment plans must align with life expectations.

Best of luck to you and your husband in making the treatment decision and moving forward.

Jim

Thanks. I assume with a 3+4 his risk group was favorable intermediate, assuming no concerning staging issues found on biopsy. That would prevent you from getting a PSMA PET scan in most cases. With the high risk evaluation in his Decipher test, that might motivate your RO or urologist, whichever is doing the overall management, to order a PSMA PET scan that your insurance might approve. That could potentially confirm that he actually needs ADT and radiotherapy instead of surgery.

Your thoughts on the post surgery pathology are good. Keep in mind that not only will the gland be removed, but also the seminal vesicles and some number of pelvic lymph nodes will be biopsied for pathology. You should inquire about what fraction of pelvic nodes will be removed/biopsied, which ones (some are more prone to spread cancer out of the pelvis than others) and discuss unilateral or bilateral nerve bundle sparing versus cure rates with the surgeon for those with high risk cancer.

As far as the systemic aspect of ADT goes, just keep in mind it is not curative. It can suppress the cancer, potentially for a very long time, but it is not cytotoxic like radiation or chemo.

I'm not going to try to persuade you one way or the other, but, I don't believe there is a big difference in possibility of recurrence either way.

I had robotic prostatectomy and a recurrence in less than a year. I was also 3+4=7. Had salvage radiation since then and now still on ADT (doc wants me on it for 2 years.) Been undetectable for about 18 mos now.

The reason I chose this direction was that if there is a recurrence, it's much more difficult to do surgery after radiation as opposed to radiation after surgery. (or so I was told)

Recurrence treatment does not go on the standard PSA numbers. According to the PCF anything over .2 you should be seeing a Urologist as soon as possible. Personally I started out at .1, went to 1, then 1.31 and finally 1.6. Your Gleason score will tell the Radiation Oncologist just how aggressive your recurrent prostate cancer is. I had 39 external beam radiation treatments and a 6 month shot of Lupron. God Bless and good luck

All great comments here - showing just how difficult and variable this disease is. I had Gleason 4+3 unfavorable and two radiation oncolgists said they could treat it successfully. That word ‘unfavorable’ gnawed at me and against every fiber in my being I went for RP.
The reason was already mentioned: if PSA post op starts rising you can retreat with ADT and radiation - VERY difficult to do it the other way around. 4 1/2 yrs later PSA is rising, now at .14. Going to Sloan today for follow up with a second PSA.
Not looking forward to any of this, but the threat was always there so now I deal with it.
You never mentioned your husband’s age and that has a lot to do with treatment options. I was 64 at diagnosis but if I were 74 It would have been cyberknife all the way.
As one oncologist told me: whatever you decide will be the right decision. Yes, it leaves a lot to chance but that’s life, right? Best of luck!!

You might be overthinking this? When you thought/knew you had (at least) 3+4=7, you were still in the "intermediate favorable" category and you could consider radiation or other forms of ablation (using other ways to "zap" certain areas). But, like me, you got news that things are (likely) worse. In my case that was a second node of concern on a repeat MRI and two 4+3=7 on biopsy.
At that point, I no longer qualified for the (new form of) ablation clinical trial and I was advised that RP was a preferable next step for all the reasons that have been discussed. (The research urologist said he had treated a lot of post-brachy recurrence in his own practice and he felt I was not a good candidate for that with my diagnostic indicators.) This was confirmed when the RP revealed positive margins and some more advanced cancer cells in the prostate. I felt bad about losing options before the RP, but mostly bad knowing my cancer was more advanced than I had hoped.
Now I'm in the waiting for BCR stage not quite two years after RP. In this case, I'm glad I'm still waiting, but disappointed the latest uPSA was higher than previous ones. I prefer sober reflection to flights of optimism, but I can guarantee that others experiences will differ in that regard :-).

Jim, may I ask what your Gleason score was and how many positive cores? I have 5 cores all 4+4. all one side. some higher that others, highest was 85%. PSMA pet scan showed "potentially" no spread to Lymph Nodes or seminole Vesicules. I', scjheduled for RP on the 29th...

Rose, I agree with the other comments, no two people are the same and each man will ultimately need to move forward with the treatment plan best from himself and his loved ones. For myself, I went with a robotic radical prostatectomy with nerve sparing at a center of excellence. I had my surgery in November 2022 and was 56, healthy, positive attitude with life, and was wanting another 30+ years of living with my wife. I did a significant amount of research before my first appointment to ensure I went into the the conversation with a baseline of knowledge. I decided on a robotic RP because of several reasons: (1) I wanted to fully understand the level of cancer that was in my body (post surgery pathology) and not rely on imperfect imaging tools and biopsies. (2) Cancer is so complicated and you never really know if the prostate cancer is completely gone - A RP does not guarantee all the cancer is removed, but in my opinion, gives you the best chance to address the known cancer. (3) A radical prostatectomy removes the prostate, seminal vesicles, and an assortment of pelvic lymph nodes versus radiating areas of concern or suppressing the cancer. (4) I did not want the possible side effects of radiation. I can handle the potential side effects of the RP (incontinence, impedance, infection), but I did not want to add in another variable like radiation.

Everyone is different when coming back from a radical prostatectomy. However, if you choose the best possibly doctor at a center of excellence (like Mayo-Rochester), your chances of recovery are very good. For myself, I am a bit over a year out from surgery. As far as I know, cancer has been removed (can never really know) and follow up PSA levels have been undetectable. Thankfully, incontinence and impedance were minimal post 3 months. As with others, I was methodical with my Kegels and getting plenty of sleep after the surgery. Also, stayed active during the recovery.

Please note - I am completely biased based on my experience with the RP. Each individual is different and treatment plans must align with life expectations.

Best of luck to you and your husband in making the treatment decision and moving forward.

Jim

All great comments here - showing just how difficult and variable this disease is. I had Gleason 4+3 unfavorable and two radiation oncolgists said they could treat it successfully. That word ‘unfavorable’ gnawed at me and against every fiber in my being I went for RP.
The reason was already mentioned: if PSA post op starts rising you can retreat with ADT and radiation - VERY difficult to do it the other way around. 4 1/2 yrs later PSA is rising, now at .14. Going to Sloan today for follow up with a second PSA.
Not looking forward to any of this, but the threat was always there so now I deal with it.
You never mentioned your husband’s age and that has a lot to do with treatment options. I was 64 at diagnosis but if I were 74 It would have been cyberknife all the way.
As one oncologist told me: whatever you decide will be the right decision. Yes, it leaves a lot to chance but that’s life, right? Best of luck!!

So good to read what you have to say, heavyphil. Jim is 71, good weight and healthy. Neither the urologist nor Jim's primary doctor have any concern about him having the surgery. We hope the symptoms aren't too difficult to live with, and that there's good improvement over time with them. And hoping, of course, that they get all the cancer. (That is if he definitely decides surgery is his option--which I hope he does.) Sorry to hear about your rising PSA 4-1/2 years down the road. As I'm typing this, you've maybe had your appointment at Sloan. Sloan has a great reputation. (We're at Mayo Rochester.) Sure hope you get the information you'll need to move forward successfully. I love what you said in your last paragraph! Best of luck to you, too!