Second Guessing Surgery Decision - Advanced Prostate...

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Second Guessing Surgery Decision

jazj profile image
jazj
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I'm posting this in the Advanced PCa forum as this involves potentially assuming I'm going to need to deal with Advanced Prostate Cancer.

The problem with treatment decisions is no one ever knows at your early stage if you have micrometastases outside your prostate.

My biopsy results, 2 months ago at age 53, were Gleason 3+4, 20 cores, 12 standard and 4 each targeted out two lesions on one on each side, 60% cores positive with 16% of tissue in my positive cores being Gleason 4. There appears to be one tumor on one side only as lesion on the left side identified by MRI was benign based on targeted cores but I have some 3+3 elsewhere on that other side so I guess that makes me clinical stage IIc based on biopsy results. This normally would make me "Favorable Intermediate Risk." But my PSA is 31.8 which any PSA > 20 makes you High Risk no matter what your biopsy results are, even if the biopsy finds very little 3+3 cancer. However, my PSMA PET Scan (and MRI) show no indication of any cancer outside my prostate. So the doctor's I consulted think I represent an untypical case in which I have a good size tumor in one side of my prostate producing higher than average amount of PSA but we may have caught it early enough that the cancer has not spread outside my capsule. Can't be sure though! If that's the case the surgery will cure me and if it doesn't I can do follow up radiation (probably MRI Guided SBRT at UCLA.)

This is the study that is haunting me causing me to second guess my decision to go with Retzius Sparing (probably unilateral nerve sparing) surgery with one of the top surgeons in the country (Dr. Daniel Lin at University of Washington).

jamanetwork.com/journals/ja...

The data shows that long-term outcomes would most likely be similar between Prostatectomy or SBRT+ADT (I'm assuming most centers of excellence are moving from EBRT+BT+ADT to the latest real-time MRI Guided SBRT aka Viewray MRIdian + ADT for RT treatment, at least the initial studies are showing same results with less chance of side effects than older RT methods.) This equal long term outcome is only for PCSM rates.

The study shows that over at least 10 years there was a significant delay in time to distant metastases between RP and EBRT+BT+ADT whether optimal or not. In fact the Optimal EBRT+BT the slope of the graph levels out at about 7 years indicating if primary treatment fails, those receiving Optimal EBRT+BT could have had quite a few more years before distant metastases, maybe as much as 10+, not just 1 or 2 years more than Optimal RP. This means more aggressive treatments (repetitive and/or longer term ADT, Doxatel, etc) that have more significant negative effects on quality of life would theoretically be delayed much longer if RT is chosen as the primary definitive treatment over RP and the primary treatment failed.

The MSKCC Nomogram for my parameters is showing 24% chance of being free from biochemical recurrence at 10 years, that’s not a promising number. STAR-Capra nomogram is showing 18.5% PCSM at 15 years, while that’s not a very high percentage, I will only be 68 in 15 years. However neither of these nomograms take PSMA PET Scan Results into consideration because PSMA PET has not been around long enough to accumulate enough data. My PSMA PET was negative for any diseases outside the prostate capsule with primary lesion having an SUVmax of 8.7, keeping in mind the sensitivity of PSMA PET is only down to about 2mm. However a study done in China with results released October 2021 showed that no patients with recurrence had SUVmax less then 15.7, BUT, no patients without recurrence had PSA greater than 16 (and mine was 31.8)

frontiersin.org/articles/10...

What I am getting at is, based on all my prognostic indicators, if based on the MSKCC nomogram (and STAR-CAP), the chance of RP being curative seems very low, and because the first study I referenced the PCSM was the same despite primary treatment, this indicates to me, Salvage RT+ADT has a very low chance of being curative if RP fails otherwise Optimal RP would have had a lower rate of PCSM over RT. If my goal is, in the event the primary treatment isn't curative, to delay aggressive treatments for distant metastasis as long as possible, shouldn't I just go with MRI Guided SBRT + ADT as my primary treatment instead of RP?

Or does my PSMA PET scan result translate to a high chance that I’m a “Red Herring” essentially representing a patient that has an unusually high PSA for truly localized cancer with no regional or distant micrometastases and thereby the prostatectomy could have the highest chance of being curative? If not, then why not go with MRI Guided SBRT with short course ADT to have a longer delay to distant metastases if the treatment fails, giving higher quality of life while better treatments are hopefully coming out?

Tough decision. I'm having a second consultation with Dr. Lin 1-week prior to surgery (can't get in with him sooner!) to run this by him but I'd be really interested in the opinions of others in this forum.

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jazj
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Justfor_ profile image
Justfor_

There is another way to check the origination of your high PSA. Avodart will lower any benin component and thus you will get a clearer view of the cancerous one. One draw back of this test is that it takes time to get results. Due to the long half life of Avodart it takes months to reach the steady state concentration. Six months is regarded as the minimum. You can speed up things by starting with a double daily dose. Each capsule contains half a miligram of the active substance, the half life of which is 50+ days (the latter explains the miniscule quantity of the long duration dose) With some calculations you can establish a tapering scheme that will bring you the steady state concentration earlier without going over it.

Aodh profile image
Aodh

I can’t advise you as to what you should do, I’m not qualified and even more importantly, it has to be your decision; you’re the one that will live through the consequences. I can relate to your internal questioning though. When my urologist was honest enough to say that he would perform the surgery and that I would still need to have radiation and ADT, I opted to go straight for radiation and ADT. That isn’t to say that you should do the same; my PSA was 87 and the cancer had spread locally to the seminal vesicles.

I did find writing down all the pros and cons of each treatment option (my view of them and my feelings regarding the potential side effects etc.) made me realise both my fears (unfounded and otherwise) and my expectations (as objective as a subject can be!) we’re going to hang around and obviously impact my decisions.

Like you I was concerned that micro metastases were already in my system. I knew that surgery couldn’t get them and that a significant course of ADT maybe could (but there are no guarantees with cancer).

I knew that I would second (and third etc.) guess myself, so I gave myself permission to be wrong; I could only make the best treatment decision based on my biases with as accurate information as I could get and absorb.

There wasn’t a decision that would guarantee the outcome that I wanted; that was/is unknowable in advance, so with permission to be wrong I made the best decision that I could and that helped me calm down.

I hope that you can work through your worries and gain some calm before your treatment commences, whatever you decide.

Best wishes,

Hugh

Tall_Allen profile image
Tall_Allen

I think that what is confusing you is the "outcome" you are looking at. The only outcome that is relevant to men with localized PCa is recurrence-free survival. You are at a point where what you want to know is whether the primary therapy you choose will succeed or fail. By "succeed" we mean that no salvage treatment will be required. By "fail" we mean that salvage treatment will be required.

Read this:

prostatecancer.news/2016/08...

As to which kind of radiation therapy, here are some choices:

prostatecancer.news/2021/06...

prostatecancer.news/2021/01...

You will notice that several have biochemical (PSA) recurrence-free survival rates over 90%

jazj profile image
jazj in reply to Tall_Allen

Tall_Allen The first link you provided is the summary of the study I referred to in my original post. I actually consulted with the primary author, Dr. Amar Kishan at UCLA a month ago and because the study shows no difference in rate of Prostate Cancer Specific Mortality (PCSM) he considered RP or RT to have equal outcomes from mortality standpoint in the long run and basically said to compare aspects of the treatment itself and potential side effects as to which one is best for you and your preferences/goals.

I've basically been spending most my days reading and reading. The new real-time MRI Guided SBRT + short course (6-month ADT) is slowly becoming the new "Gold Standard" (aka Viewray MRIdian). Initial results from Dr. Kishan's study show lower chance of side effects.

biospace.com/article/releas...

Since posting, I have reached out to Dr. Kishan regarding my follow-up analysis of his study since we first spoke a month ago. I am awaiting his response and in the meantime I have discovered a key factor in that study that both you and I have referred to.

In the "Optimal RP" group only 4% of the RP patients received ADT, and an additional 5% received ADT without RT. That means in the Optimal RP Group, only 9% of the group received any kind of ADT. Comparatively, everyone in the Optimal RT groups received ADT, long term, 24-36 months. My hypothesis is that the reason the distant metastases rates diverge with the RP group is the ADT is holding the cancer at bay in 100% of the Optimal RT group and only 9% of the RP group. You can see on the graphs, the line for the Non-Optimal RT group doesn't flatten nearly as much as the Optimal RT group. That's because by definition, the optimal group was required to include ADT.

If the study went out beyond 10 years, the RT groups will probably eventually start falling again once the cancer becomes castration resistant. The study just didn't go far enough out to show that. If 100% of the Optimal RP group was required to also have long-term ADT line the Optimal RT groups, the difference in time to distant metastases would probably be much less significant if significant at all. I will wait to hear what Dr. Kishan says about that.

So I guess after all that, the simple question is, assuming the primary treatment is not curative, is there conclusive evidence that initiation of long-term ADT can be postponed significantly longer if I choose SBRT+ADT (Kishan recommends 6-months) for primary treatment, rather than RP? I'll see what he says.

Tall_Allen profile image
Tall_Allen in reply to jazj

That is NOT what you linked. Please re-read my post. You are misunderstanding the decision before you.

Tall_Allen profile image
Tall_Allen in reply to Tall_Allen

Also see:prostatecancer.news/2018/11...

But I can't emphasize the mistake you are making enough - the ONLY endpoint you should be concerned with is bRFS.

jazj profile image
jazj in reply to Tall_Allen

Oops you're right. I just looked at the title and it was very very similar. I think Kishan's study with results in 2021 is preferable as the cohort size there was 6004 patients which is much larger than most other studies, it's relatively more recent, and the follow-up is much longer than most other studies showing results out to 10 years. And as I said, I think the real takeaway form that study is that the PCSM rates were equal over 10 years even between RP and EBRT+BT+ADT and the difference in time to distance metastases was primarily due to long-term ADT use in the RT groups and next to nothing in the RP group.

Tall_Allen profile image
Tall_Allen in reply to jazj

That's not how to evaluate a study. It's part of the way, but the central question should be : is the endpoint appropriate? I talked to Kishan about it, and he agrees. He is looking at revising the multi-institutional analysis with the more predictive endpoints (if he has the data).

PCSM, OS, and MFS are inappropriate endpoints for predictive studies on localized PCa patients. Once you understand that, I think your anxiety will disappear.

Teufelshunde profile image
Teufelshunde in reply to Tall_Allen

The first link you share talks about high-risk people. Is the one PSA indicator enough to move someone into high-risk catagory when everything else points to low-risk?

Tall_Allen profile image
Tall_Allen in reply to Teufelshunde

Yes. High Risk is defined as PSA>20 or GS8-10 or stage T3/4

Tony666 profile image
Tony666

Hi. It’s a difficult decision but it sounds like you are gathering info and thinking it through. I thought I might share my perspective in case it helps.

I was in a similar situation 2 years ago in having high risk but seemingly localized prostate cancer. I was relatively young (61) and worried about the long term impact of significant radiation plus 2 years of ADT. At the same time, research pointed to a higher cure rate for radiation + 2 yrs ADT than surgery. I was therefore leaning towards radiation until I found door number 3 - 6 months of intensive ADT to systemically attack any escaped micro prostate cells followed by surgery to remove the mothership. It’s not SOC but a reputable trial at either NIH or UCSandiego. I did it at NIH but both trials are extensively discussed in the blog “vital jake”.

I am very pleased with the result. After 2 years PSA remains undetectable. No issues of countenance. T came back nicely. Some ED but manageable. Of course, not everyone fairs as well and there are risks in whatever you choose. But if you would prefer surgery so as to avoid so much radiation but feel some systemic treatment along with surgery is warranted, it’s not a bad option. Anyway, something you may want to explore.

jazj profile image
jazj in reply to Tony666

Tony666 What a coincidence. After I posted I was just racking my head thinking what combination have I not researched. And I got to thinking, I wonder if there's any evidence that short-course adjuvant systemic therapy after RP can eradicate the micromets before they turn into macrometastases that require salvage treatment? Well I'll need to look up "vital jake" because in about 1.5 hours of scouring Pubmed, everything I turned up had no evidence it made a big difference. But I don't consider my search completed so I'll definitely look at those NIH and UCSandiego trials.

I suppose one reason the Urologist might be adverse to the ADT is they want to test the PSA 3-months after surgery to see if PSA is undetectable to gauge the success of the surgery but I imaging it being undetectable 3-months out is no guarantee the surgery was curative. So waiting until 9-12 months (at least 3 months after ADT) to determine if PSA is undetectable would be no big deal as I think you want to try to wait several months anyway before having salvage RT.

I really want to avoid ADT, but it's pretty much assured unless the surgeon saves both nerve bundles, any sort of useful erectile function is going to be bye bye for 6 months minimum after surgery anyway and I read your max recovery point can take up to as long as 2 years. So it's not like 6-months ADT after surgery is going to make the difference between being potent or not. I'll ask Dr. Lin about doing 6-months ADT after surgery if I can find good evidence to back it up assuming I don't change my mind and go MRI Guided SBRT+ADT.

Did you have Retzius Sparing surgery and did they preserve both or one nerve bundle?

Tony666 profile image
Tony666 in reply to jazj

They said it was bilateral nerve sparing (my understanding is that this is fairly standard now) but they also told me they cut “wide” on the side with cancer to try to get it all so I suspect it was de facto single sided nerve sparing. Still, things seemed to heal nicely.

jazj profile image
jazj in reply to Tony666

Yes, I have since gotten into the weeds on surgical techniques as supposedly the amount of nerve sparing can have different degrees. There are different grading systems but generally I think it's 1-5 where 1 is they left very little to no nerves and 5 they left them pretty much all intact.

There are two new methods to aid the surgeon in having more confidence in how much nerve tissue they can spare. Neurosafe (out of Germany) uses frozen section examination of the tissue during surgery after first removing the prostate, leaving the nerves intact. If they see microscopic cancer in the outer portion of the tissue, they dissect more of the nerve area tissue then examine and keeping working their way out until the tissue looks "clean" under the microscope. Unfortunately no one is doing this yet in the United States, even in a trial.

pubmed.ncbi.nlm.nih.gov/225...

The other new technique I learned about from Dr. Peter Carroll at UCSF is they completed a Phase I Trial where they inject you with a PSMA based fluorescent tracer several hours before surgery, similar to when you get PSMA PET Scan. It then can light up the tissue with cancer in it during surgery using a special light. Unfortunately for me, they have not yet secured funding for a Phase II trial.

See PDI 61-04

auajournals.org/doi/pdf/10....

Both of these are something that future PCa patients electing to have surgery a their primary treatment will benefit from I think, especially the latter.

Wish I had access to either of these technologies during my treatment.

timotur profile image
timotur

Have you had a MRI/PIRAD score? It would probably confirm whether or not this is contained to the prostate. A PSA in the 30’s is high enough to suspect either LN or SV involvement— I was PSA 29 with a PIRAD of 5-- indicating +SV+LN. If PIRAD confirms no EPE, I would lean toward surgery, otherwise I would do HDR-Brachy. Just MO. Best- Tim

jazj profile image
jazj in reply to timotur

The tumor is PIRAD 5 in the less common transition zone area (farther from the prostate capsule periphery.) But there was a second PIRAD 4 lesion on the left side that was all benign in all 4 targeted cores. One of the non-targeted cores on that left side found High-grade prostatic intraepithelial neoplasia (PIN) and atypical small acinar

proliferation (ASAP).

I had an 18F-DCFPyl PSMA PET (even better than the older Ga68 PSMA PET) Scan which is far more sensitive than the MRI used prior to a year or two ago and it was negative for anything outside the prostate capsule. There was no indication of disease in the lymph nodes. Nanogram that does not factor PSMA results at MSKCC shows 37% chance of lymph node invation. I would say if the nanogram was updated to include PSMA PET results, that percentage would be lower. The SUVmax on the PSMA Pet of the Right Lesion was 8.6. A recent study in recurrence with people that has PSMA PET Scans showed no one with recurrence had less than a 15 SUVmax but also, no one with greater than 16 PSA was free from recurrence.

Basically what I'm getting at is I think relying on any one diagnostic factor provides too narrow of view for evaluating statistical probabilities of outcomes.

timotur profile image
timotur in reply to jazj

Good info jaz, my SUV Max was 21 at the right-posterior lobe and 3.5 at a meso-rectal node, but no distant mets-- thus I chose HDR-BT/IMRT. It looks like yours is contained to the prostate based on imaging and you have a good chance of a cure. Wonder if you could link that Chinese study about recurrence at SUVmax levels above 16, I would be interested to see if it categorized recurrence by different treatments?

jazj profile image
jazj in reply to timotur

Here's the study regarding PSMA results as Biochemical Failure chances.

frontiersin.org/articles/10...

timotur profile image
timotur in reply to jazj

Thank you, just quickly reading, appears the cohort was T2/T3, average PSA of 13, and underwent RP.

Blackpatch profile image
Blackpatch

You're in a tough place, and seem to be doing well to keep all the complexity in your head. A few observations from my perspective:

PSMA PET is not great at detecting ECE or SVI; I had the scan pre-RP and came away with a clear result, but there was 1mm ECE and bilateral SVI.

Consider getting Decipher testing - my very bad Decipher outcome led me to early SRT and 12 months ADT + abiraterone for the first 8 months. Decipher said that my PORTOS score was very high, meaning I was a good RT candidate, and today I just got another "undetectable", two years after T started to recover (and about 20 months after full T reached).

All that said, if I had my time again I would have ADT first and then RP - I tried to do this when I had the surgery (Dec 2017) but it just wasn't available. It just feels like a sensible approach. Treatment based purely on radiation is probably also a very good choice, but had I gone that route I wouldn't have known that I was T3b and wouldn't have had Decipher run, which I feel has guided me well.

I understand where you're at - trying to balance ED, mortality, metastases-free survival, avoiding ADT and a bunch of other things, most of it spoken in a lingo you didn't know six months ago and yet now feel you must become proficient in. I had nerve-sparing surgery and enjoyed five months of BCR-free life in which I felt survival was all that mattered.... it's amazing how quickly priorities change once you realise you're not going to die too quickly... you really regret the loss of potency... even after nerve-reconstruction, I still need injections, and frankly, I bother less and less these days.... how sad is that??

One thing you say that worries me is that you're still in this place about 5 minutes pre-RP. I personally would put a big red line through that and pause for a short while to get your bearings - you have a long life ahead of you, don't spend any of it regretting choices.

Stuart

jazj profile image
jazj in reply to Blackpatch

You make very good points and I really appreciate the input. Yes, I have one more appointment scheduled with the Urologist/Surgeon Dr. Lin for final questions before surgery and I am prepared to back out and re-assess if I the consultation doesn't improve my confidence. Considering it's a slow growing cancer, I am considering the possibility of postponing until the Phase II Trial for PSMA intraoperative fluorescence is started as Dr. Peter Carroll at UCSF (where they invented the PSMA PET scan - by Dr. Hope) said the Phase I Trial results were very encouraging.

dadzone43 profile image
dadzone43

A tough and fraught decision. At some point you will be able to commit to a decision. In my experience, nerve sparing has not worked. But others have different, better outcomes. I started with G7 and G8 and am 3-1/2 years post op with no detectable PSA. I am satisfied with my decision despite the impact on my sex life.

jazj profile image
jazj in reply to dadzone43

That's encouraging to hear your story. You are 24 years older than me which probably explains the erectile function hit despite having nerve sparing. What was your PSA and did they remove lymph nodes? I assume your pathology report showed no cancer in the removed tissue since you have no detectable PSA 3-1/2 years later?

dadzone43 profile image
dadzone43 in reply to jazj

Exactly right. He "spared" the right side but the left side was tumor involved. 12/12 lymph nodes negative for tumor. Pathology showed tumor at the margins. My surgeon believed that the cautery cutting device would kill tumor cells at the margin. We will see. I did all the penis rehab including cavernosa injections. I could not use Tri- mix because it gave really bad pain in the perineum. Bi-Mix did not and it gave a marginally OK erection. I decided at that juncture that since I did not do/have/give penetrative sex erections we're not all that precious for what it took to produce them. I am adjusted to that. I will always grieve the loss of erection and loss of semen. But I cannot change that. Desires are not much different at near-79 but needs are.🥴

dadzone43 profile image
dadzone43 in reply to dadzone43

I think my PSA got to 13, if memory serves.

ADTMan profile image
ADTMan

Where is your tumor? Is it in the peripheral zone or the transition zone?

jazj profile image
jazj in reply to ADTMan

Transition zone. MRI measurement is 2.2cm. Prostate is 31cc. PSMA PET did light anything up at all outside the Prostate Capsule. That's a good sign but of course not conclusive due to possibility of cancer smaller than 2mm not being detected. But a lot more sensitive than MRI prior to PSMA.

ADTMan profile image
ADTMan in reply to jazj

You might want to take into consideration that transition zone tumors have a better prognosis. I had the same size tumor and psa in the anterior transition zone and did hdr brachytherapy and 25 imrt treatments with 2 years of ADT. That would be the standard of care, but the mri guided sbrt might be an option. Transition zone tumors are known to produce more psa and have a different cellular makeup which may mean that what otherwise may be a high grade tumor in the peripheral zone is not as dangerous when in the transition zone. I once asked a very experienced urologist whether a transition zone tumor can exhibit extra capsular extension since it is surrounded by the peripheral zone. He told me no, so I have no idea why an mri would say it did. My mri report said mine did, but a small amount of extracapsular extension or extension into the seminal vesicles can be treated with radiation. The safest route is to combine ADT.

jazj profile image
jazj in reply to ADTMan

Thanks again for bringing up the transition zone. When the doctor mentioned it was a less common area, he never said what that might mean as far as affecting prognosis. Your comment prompting me to do a bit of digging and what I found confirms what you are saying and sounds encouraging. Apparently the tumors in the transition zone typically produce more PSA and present a more favorable chance of being biochemical failure free after primary treatment (sort of an oxymoron.) So despite having a 31 PSA, there could be a higher than normal chance the cancer may still be locally confined to the tissue that will be removed at surgery compared to if the tumor was in the peripheral zone. Apparently about 20% of cases the primary tumor is in the transition zone and 80% in the peripheral zone.

bjui-journals.onlinelibrary...

noahware profile image
noahware

Maybe no one knows if you have micrometastases but it's a good assumption you do have them, with a PSA that high. The question is, what is going to become of them? What no one really ever knows at the early stage is if and when those micrometastases are going to become aggressively life-threatening, and how quickly it happens if they do.

You said, " My hypothesis is that the reason the distant metastases rates diverge with the RP group is the ADT is holding the cancer at bay in 100% of the Optimal RT group and only 9% of the RP group. "

That makes sense. And so one might even consider, why treat the primary tumor with RP or RT at all, and instead just do ADT (perhaps in combo w/ chemo, and/or abiraterone, and/or a 5ARI)?

Not many docs would consider this, instead going for the "cure." Men with early-stage prostate cancer face the treatment dilemma posed by the urologist Dr. Willet Whitmore: “If treatment for cure is necessary, is it possible? If possible, is it necessary?”

ALL treatments are going to impact QoL, and the real challenge is to to estimate how they will impact overall survival and impact what Dr. Whitmore described as the “unknown activating power to release the malignant potential" of one's PC.

Personally, if I did not have mets, I would have chosen RT over RP, simply based on a greater fear of surgery over fear of radiation. (I know, fear is not the best basis for decision-making!) But if you have a top surgeon lined up, maybe...

jazj profile image
jazj in reply to noahware

"That makes sense. And so one might even consider, why treat the primary tumor with RP or RT at all, and instead just do ADT (perhaps in combo w/ chemo, and/or abiraterone, and/or a 5ARI)?"

I think the strategy to delay ADT until there is known recurrence, or in conjunction with RT, is because in the long-run the cancer morphs into become ADT resistant. So in my opinion the sooner you initiate long-term ADT the less time there will be until the cancer becomes ADT resistant.

This brings up a good topic though another replier touched on that I'll be asking my Urologist about. What about undergoing short-course, 6 months, ADT after surgery as sort of an "insurance policy" in case it could make the difference between beating off any remaining micromets or in the least delaying recurrence and thereby extending better quality of lifetime prior to initiating secondary and tertiary treatments? Of course the 6-months of ADT alone is going to negatively affect quality of life. But If all that is left is a small amount of microscopic disease, can adjuvant short-course ADT cause all the rest of the cancer to die?

noahware profile image
noahware in reply to jazj

Agree, I should have added "intermittent" to the idea of early ADT. (The MO Dr. Bob Liebowitz prescribed that combo I mentioned, adt + chemo + 5ARI, for 13 months and then watch PSA rise and rise to see if it would stabilize, and if not only THEN resume ADT as required.)

Author Paul Steinberg has gotten 35+ years out of iADT with metastatic PC, I believe.

No sense in worrying....... as my Research and Professor told me in 2004, it mattered not which primary treatment you had -surgery or radiation- it was too late due to micro-metastasis at original diagnosis. In other words, it matters not your procedure, you will either get it all or you won’t........ kill the little bastards,

GD

jazj profile image
jazj in reply to

" it matters not your procedure, you will either get it all or you won’t"

That seems to put succinctly what the latest research at least from 2021 is showing.

in reply to jazj

Yep, nothing has changed in 17 years.......

jazj profile image
jazj

So I was able to get on the phone and have a second conversation with Dr. Amar Kishan at UCLA whom I consider a world expert in Radiotherapy Treatment for PCa. His study data is frequently referenced here and other places by different people. Some main takeaways.

He still believes the surgery has just as high of potential to be curative as SBRT+ADT for my case. This is coming from a Radiation Oncologist using/studying all the latest technology not a Urologist/Surgeon. This is backed up by his 6004 patient cohort study published in 2021 as there was no significant difference in Prostate Specific Cancer Mortality between all different types of treatment.

He said logically, salvage surgery after radiation may be more viable with the new MRI SBRT, but it's too early to tell for sure. But there are of course salvage RT options after initial RT so salvage surgery may really have no benefit over salvage RT.

He confirmed if my surgery is only unilateral nerve sparing, if Viagra was enough before salvage RT, it won't be after. Bilateral, Viagra may still be enough even after Salvage SBRT after surgery.

He'd recommend 12 months ADT with radiation (instead of 6 months previously mentioned) in conjunction with SBRT if I chose that as the primary treatment due to my high risk PSA.

But he also said my 20-core biopsy results were a relatively more important prognostic factor than my PSA score, but BOTH are important along with PSMA PET Scan results. So don't get too hung up on your focusing on your PSA alone when making decisions. (Biopsy was 12 standard cores + 2 sets of 4 targeted at two lesions on the MRI = 20 total, 60% cores positive, overall Gleason 3+4 with only 16% total positive cores having Gleason 4) The main tumor is on one side in the transition zone (near more the center of the prostate which is much less common.) All this indicates there is a good chance the cancer is locally confined, but of course the high PSA does present about a 1 in 3 chance I have lymph node involvement the 18F DCFPyl PSMA PET Scan did not catch.

I'm still leaning towards surgery which coincides with the recommendations of the Chiefs of Urology at UCLA, UCSF, U of Wash, and James Porter at Swedish Seattle. The main reason behind their recommendation is that I am young, have perfect urinary and erectile function, the surgery will immediately lower the cancer burden despite the end outcome, and if surgery fails, it leaves radiation as a salvage treatment whereas I can't do it the other way around. NONE of these top Urologists at some of the highest volume most well-known academic centers doing research in Prostate Cancer said they considered the decision a coin toss. Basically cut it out first and see if its cured and thereby avoid radiation and ADT. If it's not cured now you have the pathology report to be more informed about what you are dealing with to guide you better for secondary treatment strategy. The last point I think is the main driving factor of the top Urologists recommending surgery first over radiation first for my situation. If surgery isn't curative, knowing more about the actual stage of the cancer with higher confidence (at a microscopic level) is valuable information if I need to proceed to a secondary treatment.

The other important consideration in my mind is that the Memorial Sloan Kettering nomogoraph for salvage RT after surgery is showing an 87% chance of no biochemical recurrence at 7 years when inputting all my data. The outcome of having salvage RT after primary RT I have no clue.

What it boils down to is if both treatments have the same chance of being curative, choosing surgery gives me a chance of avoiding ADT if it is curative and having no chance of secondary malignancies (a relatively minor consideration I admit) from radiation exposure. On the flip side, if I assume I'll take a serious hit to my erectile function from surgery that requires high-dose Viagra to overcome, if it's not curative, the salvage RT will obliterate my remaining erectile function. If I get bilateral nerve sparing followed by salvage RT, Viagra still may be enough (according to Dr. Kishan.) RT followed by salvage RT, I assume also would obliterate my erectile function.

So for me, I think the bottom line is, when on the fence, trust the consensus of experts at the top of their field which in my case is the only treatment route that gives me at least a chance of achieving what I consider to be my IDEAL outcome: a cure without going through ADT. Another important point, with RT you won't know for a relatively much longer time if it was curative while you wait for your PSA to bottom out. Who knows what the cancer is doing in other places that wasn't treated by RT all that time while you wait for your PSA to bottom out? With surgery, I don't have to wait many months to see where my PSA bottoms out so I can act quicker regarding salvage therapy.

I think we all have our biases as not all factors carry equal importance between individuals. Unfortunately lack of diagnostic information gathering technologies that provide a very high certainty of detailed prognosis, makes choosing PCa treatments not a clear black and white decision in many cases. The medical experts can be biased to varying degrees towards treatments in their areas of expertise. Studies can be underpowered or outdated, etc. I think if the primary treatment fails, I'll feel better that at least I chose the treatment that gave me a chance to achieve my ideal outcome of being cured without having to go through ADT. If I chose RT, I would be eliminating the chance to achieve my ideal outcome. Had Dr. Kishan said he thought choosing RT as the primary treatment has statistically significant lower chance of Prostate Cancer Specific Mortality in the long run, I'd think differently. But he didn't. If combined with my high PSA I had Gleason 8-10 as opposed to low 7, or PSMA PET results showing lymph node involvement, I may think differently. But I don't have those. So I think personally I'm making the decision that will have the least potential for later regret no matter what the outcome.

cancerfox profile image
cancerfox

This might help! 😃

Decision Maker
j-o-h-n profile image
j-o-h-n

So this man is down and out. Lost his wife, his automobiles, his house, his girlfriend, his bank accounts and all except the money he has is in his 401K account. Just a couple of thousand dollars. He can't handle it any more so he gets on his knees looks up to the sky and he says "oh dear Lord what shall I do". A booming voice comes from above and says "Son buy a bible and take it to the beach and I will show you". Sure enough he rushes to buy a bible and he runs to the beach. So he's sitting on the sand with the bible next to him for about 2 hours, and nothing happens. He looks above and says "I've been waiting for a sign for 2 hours and so far no sign from you." With that a strong gust of wind suddenly blows open his bible and turns the pages and stops at a page, labeled "chapter 13".......

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/05/2022 8:14 PM DST

Scout4answers profile image
Scout4answers

shouldn't I just go with MRI Guided SBRT + ADT as my primary treatment instead of RP?

This is what I have decided to do

jazj profile image
jazj in reply to Scout4answers

At your age with Gleason 3+3 I think that's an excellent decision. My Dad was the same age a few years ago with Gleason 3+3 (PSA 11) and did Cyberknife SBRT without ADT and 3.5 years later his PSA is still at undetectable level. The new MRI Guided SBRT is essentially the new and improved Cyberknife. It's nice that you don't have to have the gold targets implanted with the new MRI Guided SBRT.

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