I need to decide. Urgency? Been on Lupron for 3 treatments now9months.
Aware 5 - 10 year results similar. Where radiation much less side effects up front.
long term +10 years rp has better recurrence free %.
I would go radiation knowing I can do rp later if recurs, psa goes up.
problem surgery more difficult much bigger chance of side effects, perm damage, etc. if I do after radiation.
Ihave one of best robotic surgeon in country. My pc is advanced stage 3 gleason9. Out of 11 samples 4 were positive. 3 Gleason 7. One 9. The 9 has spread to the seminal vessicle but still local.
Surgeon explained in detail both options he is neutral but leaned toward surgery saying it is local and beyond 10 years may provide a better prognosis. He also noted if I needed surgery he would recommend doing before radiation. As radiation can see scarring and creates problems for surgery.
Being he is expert robotic professer surgeon I believe the rp risk of side effects is minimized. I do not like having to pee thru a catheter but…
All thoughts, experiences, recommendations are appreciated.
thank you and have a great day!
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Cp014
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I would only consider RT if it were me. SVI is a pretty major contributor to BCR and you'd probably end up with RT at some point anyway. Good luck to ya!
You will get 2 recommendations pro radiation as first treatment for every one pro surgery. But, if you study the users profiles you will find 3+ of them that had surgery as first treatment for every one that had radiation.
A few reasons I'm glad I had RP include 1) RP pathology report provides more info on the extent of spread, 2) PSA becomes a very reliable indicator on status of cancer, 3) radiation is a good backup plan. I've had no incontinence issues, and sildenafil takes care of my ED.
Lots of misinformation in your post, which usually occurs when you have not talked to a top radiation oncologist. The good news is you have plenty of time to talk to experts before you decide. The Lupron will delay progression for years, probably.
(1) "Aware 5 - 10 year results similar." Not at all true for high -risk patients like yourself. Fill out this nomogram:
It shows that your probability of having truly organ-confined PCa is only 7% and the probability that you will be progression-free in 5 years and 10 years if you have a prostatectomy is only 28% and 17% respectively.
OTOH, 5-yr metastasis-free survival in high risk men was 94% with brachy boost therapy:
(3) "I would go radiation knowing I can do rp later if recurs, psa goes up. problem surgery more difficult much bigger chance of side effects, perm damage, etc. if I do after radiation...He also noted if I needed surgery he would recommend doing before radiation. As radiation can see scarring and creates problems for surgery." This is partly true and very misleading. It is true that salvage prostatectomy should never be done after radiation. What is misleading is the implication that there are not far better salvage therapies. All of the following can be done if initial radiation fails:
You will notice that they are all more effective than salvage RP and have much fewer side effects.
More to the point, with a cure rate (met-free survival) of 94%, your odds of needing any kind of salvage therapy are much lower.
OTOH, salvage RT after RP has much worse urinary side effects than if RT were the primary therapy, and your odds of needing toxic salvage therapy are much higher.
(4) Where are you located? I may be able to recommend an appropriate expert.
hi. I had RP in11/24. Due to the extent of the surgery ( extremely large tumor) I was on a catheter for 17 days. It really was not a problem. Learning to change the urinary collection bags took about a day when I did it in the early AM and again three times in the day. So long as you don’t play around with the cath you should be ok.
I had robotic RP in 2018. PSA rose and had 35 weeks of radiation in 2019. Radiation Onc wanted me to have Lupron along with radiation but Uro advised against. PSA Rose again, Lupron 2019-2025. Stopped Lupron as the PSA was undetectable for 4 years. Hoping to get better QOL with increase of energy and weight loss. Was told could be 12 months to feel any difference.
Will assume your PSMA PET is negative and MRI shows surgically resectable disease. Are you part of a clinical trial? Are you on anything besides ADT? Currently there are no phase III trials supporting neo-adjuvant Lupron followed by RALP in high risk localized prostate cancer
I had robotic surgery in 2008. Never had any issues with leakage or intimate times. I was told that radiation after surgery if needed is better. In 2021 my psa started to rise went on lupron for over three years. It's still undetectable. Lupron is not as bad as everyone says. Good luck.
I read your bio and am confused. Perhaps you could clarify. In your post I was lead to believe you were requesting thoughts/input on treatment options. In your bio you seem to allude to the fact that some procedure is scheduled for June.
It astounds me that even casually men on here are advising you or anyone else to get RP with a Gleason 9 and SVI. This is irresponsibly bad advice. The OP hasn’t even talked with a radiation oncologist.
To you:
Ironically, that ‘one of the best robotic surgeons in the country’ also recommends surgery surprises me not at all. Surgeons do surgery on high risk patients every day, but it doesn’t make them better, only more experienced at it.
The odds of needing additional treatment (including radiation) will be very high, near 100% in your case. Your odds of more onerous permanent side effects go up with it
I was also high risk, with SVI. SVI is a prime adverse pathology feature and increases risk of recurrence significantly-especially after surgery only.
I had RP with one of the top surgeons in the world at one of the finest centers of excellence in the US. I required much additional treatment, and have permanent consequences. There are far too many with my experience.
I am disease free so far 6 years later, but if I had it over I would definitely have chosen radiation with brachy boost, a course of Ogovyx and abiraterone.
Instead I paid an unnecessarily high price and recurrence remains a possibility, which unfortunately is always true for high risk Pca.
You have high risk disease. Please educate yourself further, take the nomogram and see the best RO you can find as Tall Allen suggests.
Every surgeon says they can ‘get it all’ but with a G9 and SVI they are only hoping to, and in the end will have kicked the can (you) down the road either way.
My 2 cents: My PC was confined to the prostate; went on Active Surveillance; was dilly-dallying debating RT vs RP, hoping for a slow growing variant; a few months later, PSA increased, and biopsy showed spread to RSV. Surgeon(s) immediately said, go with Radiation - even if we do RP, chances are high that you would need RT and therefore it is better to avoid dealing with the side effects of both RP and RT; I opted for CyberKnife plus whole pelvic radiation. I would take Tall_Allen's recommendation. All the best.
Many similarities to myself (remember, we are all a bit different). Diagnosed in July 2018, Biopsy showed Gleason 9 (2 cores), Gleason 7(5 cores), Gleason 6 (1 core) - 4 benign. Scans showed no spread (pre-PSMA PET Scans). No symptoms - PSA was around 4.5-5, although every test it increased slightly, but increased. I did full research, discussed with more than one doctor and elected for RP. One scan showed an Inguinal Hernia that needed repair. Surgeon recognized as one of best in the country. Elected for RP (robotic) and hernia done at the same time. Catheter was only needed for 9 days, have had no issues since with incontinence. I went nearly 3 years post-surgery with undetectable PSA. Slight uptick in November of 2021 - PSMA PET Scan done - one spot found January 2022. Started on ADT and had 2 months of Salvage Radiation May & June of 2022. Stayed on ADT until May 2024. Have been undetectable since about 2 months following radiation to now. CT Abdominal & Bone Scan in November 2024 shows no sign of cancer growth or progression. ---- I feel it was the right decision, partly due to surgery needed then (hernia) and possibly in the future. I experienced no issues from surgery other than I now require an injection to achieve an erection. My partner is very understanding, and we discussed this. ADT was mostly free of side effects other than occasional hot flashes and a bit of fatigue close to the end of 2 years. My testosterone has recovered to some level, and time will tell how high. I get blood tests every 3 months at present, and probably will have another scan later this year. It will be tough to get a PSMA PET Scan approved with undetectable PSA, so MRI or CT/Bone Scans will probably be done again. ---- Hope this gives some incite.
You are going to get a TON of 'advice' advocating one over the other. First of all, if you have not already done so, go and see a radiation oncologist AND a medical oncologist asap to get all of the current information regarding radiation. Also check out the PCRI website and You Tube videos for unbiased, current factual information. IN MY OPINION I would go with radiation, most experts today will tell you that the 'cure rate' for radiation today is as good or better than surgery, without the risks inherent in surgery and without the probably likelihood of incontinence and/or erectile dysfunction that will almost surely accompany surgery. The technology available today with radiation is much more advanced than even just a few years ago and continues to advance every day. With the advent of PSMA PET scans the location of the cancer can be pinpointed and precisely treated. You will get quotes of how surgery is better but note that the dates on ALL those studies are ALMOST TEN YEARS OLD and therefore no longer valid.
I myself had 44 sessions of IMRT and 9 months of Orgovyx, NO regrets. So far so good, NO incontinence, NO erectile dysfunction.
Good luck and just remember to do all your research then make an informed decision.
Been there, at the time in 2017 4/3 svi, and extra prostatic spread. I underwent RP with expectation that I would need whole pelvic and prostate bed radiation later.This was believed to be the best chance for overall survival. Only a few doctors and hospitals could do RP surgery after radiation, I was told by the best surgeons it carried risks.
None of seven lymph nodes removed were positive at surgery.
Psa 2.3 at six weeks post rp.
4 months Lupron.
Began letting PSA rise to find mets. 3.8
7 months to become continent again.
Fall 2019 38 sessions whole pelvic and pelvic bed IMRT.
2 yrs Lupron lowest PSA <0.01
Rising psa
Let PSA rise to find mets. 1.5
2023 SBRT to one lymph node in right pelvic lymph node. Second lymph none hinted at, predicted to show in future, but not shown at that time.
Rising PSA
Let PSA rise to find mets 0.89
2024 summer SBRT to one lymph node in left pelvic lymph node.
PSA declining.
Very low Stable psa since. First time ever that I've had stable PSA off Lupron. Nothing on new PSMA scans since. Previous Cancer on PSMA scans not growing and dimishing on scans, expectation is these can not divide and grow and will die and disappear over time.
RP is real surgery with real side effects and long recovery. 7 months of tiring pelvic exercises were needed. I did this for greatest chance of surviving. Estimated at 10% better survival than radiation route at that time. It wasn't something I wanted to do, but felt I needed to. It's a long road.
Radiation is prettymuch a walk in the park compared to RP. I had robotic RP.
SBRT is also a walk in the park.
Any radiation has potential side effects, which can show up down the road.
At this time I have a very good prognosis and life expectations, and lead a normal life off ADT and have for most of my time with PC. And I am optimistic the choices I've made have turned out to have been effective. And I have made ADT, and no ADT choices.
Nothing comes with a guarantee, anything can change.
Like a lot of things in life, I wouldn't want to go through RP again, but I did what I felt I had to, it's a fight to survive.
If I reach a point of rising PSA again I will plan to use my same approach, that is PSMA scans to find it and hit it with SBRT as long as that is possible and effective.
We're trying to to win this or run out the clock on PC with as little impact to my life as possible.
I've gone to the best surgeon, the best hospitals in the US for my treatments. You need to find doctors and hospitals with enthusiasm for the path(s) you take.
You should educate yourself with any newer clinical trial results.
We face so many disparities. Ten year ago I thought there were a lot. Today, it seems more. After a year of consultations across US and in Europe, I chose the much maligned RP, with a university hospital doc that had only done about 100. My continence improved (dam gone) and my sexual function recovered naturally. (Looking back wish I had known of penis pump).
As for all the data and stats, that is what they are for greater population. There remains no clear answer, no easy button. All the best to you in this difficult decision.
Time to get out the flipping coin.... Use the old buffalo nickel. Call heads cause you can't lose that way..... Head of the Indian on one side or the Head of the Buffalo on the other side.
You have high risk disease with the tumor now outside the prostate into the seminal vesicles. Have you had an MRI to determine any further extent of the tumor?
In general, if the tumor is outside the prostate capsule, radiation is the suggested treatment. I would strongly suggest you consult with a radiation oncologist. Perhaps ask to be reviewed by a multi disciplinary committee, if there is one at the facility.
Operating on tissue that has been irradiated is like operating on concrete. None of the tissue planes are apparent, there can be severe scarring . Not something most urologists would want to do unless absolutely necessary.
I have no opinion on how you should proceed but will inform you that I had my prostate removed 12 yrs ago by one of the leaders in "nerve sparing" surgery but an old-timer who didn't use robotics. Thankfully, my surgery went very well and the teesy leakage I suffer from less than on very rare occasions (less than 1x per month and about a teaspoon amount or less) doesn't even require me to change my underware. More to the point, 2 of my brothers had robotic surgery (they were checked out and Dx following my DX) and I believe they had excellent results. 10-11 yrs post surgery neither of them has needed any further treatment.
You need to do your own research and be confident in your choices. But, if I could go back and do this again I would still get a RP; I am glad I did as I needed sRT (salvage radiation). BUT, I would have gotten an IPP implant right away and not messed around, or waited for me to get back to 'normal.' It was never going to happen. The real chances of having normal erections after RP's is about 5%, NOT 50% or whatever the surgeon is pushing. You need to focus on saving your life for sure, but dont kid yourself. It will cost you something. However, if you act sooner rather than later you can salvage a lot. Now, ADT is part of the treatment protocol...but what are the consequences of using ADT?
Here is the best, most honest discussion on what really happens to men when they use ADT and when they get treatment for PCa...and who does it come from? Women Urologists...my male doctors told me squat about what would happen. Had to find out what was happening to me by myself. Be forewarned. Good Luck...Rick
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