A conditioned hardcore athlete, at the age of 59 I had Da Vinci surgery in 2010 with Gleason 4+3=7, PSA 9. Post surgical biopsy showed all margins clear with no seminal vesicle involvement. I had no incontinence and an active sex life for ten years when cancer suddenly went active again with PSA rising from zero to 2.0 in 18 months. PET scan revealed two lesions in my seminal vesicles so I went on Lupron for six months then at four-month mark, hit it with 35 Proton treatments. A few months later when Lupron wore off, and testosterone rose, PSA crept up immediately. A new PSMA scan at UCLA June of 2020 revealed a microscopic lesion in right pelvic bone.
Three treatments of SBRT was used 6/20/2020 without ADT because several doctors said it wouldn’t be needed on such a small matter. But PSA continued to rise monthly from .29 to 4.9 over six months. New PSMA scan 10/18/2021 indicated two small lesions in my lower spine and one in my hip bone.
Started Orgovyx 10/27/2021 with three treatments of SBRT performed at UCLA 18 days later. Bloodwork performed the day before SBRT showed PSA had dropped to .070 along with testosterone in 17 days. Head of RO, Dr. Steinberg, stated that in my case waiting for Orgovyx to work longer was not necessary. (Prior proton therapy RO recommended to wait a few months then go with 35 proton treatments.)
Obviously spinal involvement changes the game with the possibility of micro tumors existing after current treatment that were just too small to see on last PSMA scan. We are hoping that those can be starved with Orgovyx and possibly a secondary agent not yet selected. I agreed to six months of ADT but MO says maybe a year is better. The big question is what caused the dramatic PSA rise from .29 to 4.9 within six months?
I'm anxious to hear experiences and advice.
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SViking
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I don't understand what you don't understand. You have bone metastatic prostate cancer - it is not curable, but it can be treated as a managed disease. Chasing after detectable metastases with PET scans and SBRT is clearly of no benefit to you, but systemic therapy (Orgovyx) is. I have no idea why you think it is only for a limited term.
Thanks but there is no absolute guarantee either way. I realize the safest thing to do is stay on ADT indefinitely. Doctors at UCLA and City Of Hope think that there is a possibility of knocking any micro tumors back enough to weaken them at least so it takes a longer time to grow back. There are a variety of opinions on this. The most likely scenario is that I agreed to stay on for a year and then see what happens with the PSA. If it crosses the threshold, then it’s back on ADT
Agreed on the PSMA scans, especially now that they are fully covered under Medicare. (my first one last year had a $3,000 co-pay. Last one was covered.)
The cancer is castration sensitive metastatic and it seems to have few metastases. The SOC treatment is ADT plus abiraterone, or enzalutamide or apalutamide.
Another possibility is outside the SOC , and get treatment with Lu 177 PSMA, which is a systemic treatment which has shown to prolong life even in very advanced patients. The treatment could be obtained abroad. If interested you could see if you qualify for the following clinical trial:
I did ask about a secondary agent and was told that it's better to wait and see what happens with the Orgovyx before adding anything else. That way they would know what was working or not working. MO at City of Hope did add Xgeva last week for the bone metastasis though. She wants to do shots every ninety days instead of monthly because it is so strong.
In an effort to turn over as many stones as possible, I have been for consultations at MD Anderson, Loma Linda, UCLA, City of Hope, Mayo and California Protons. MOs at those facilities mostly agree.
Since the cancer is castration sensitive Orgovyx will lower the testosterone and the PSA will improve. Since the Stampede and other clinical trials there are data showing that adding enzalutamide, darolutamide, or abiraterone there is a better overall survival, particularly in your situation. You said:
"PET scan revealed two lesions in my seminal vesicles so I went on Lupron for six months then at four-month mark, hit it with 35 Proton treatments. A few months later when Lupron wore off, and testosterone rose, PSA crept up immediately. A new PSMA scan at UCLA June of 2020 revealed a microscopic lesion in right pelvic bone."
At least you could discuss doing abiraterone and ADT for 2 years and then see what happens.
In reviewing my notes I recall that when asking Dr. Dorf about using a secondary agent, she said in cases like mine where SBRT was used that she did not add a secondary agent. But she did order a shot of Xgeva to be administered every ninety days--not every thirty days. I don't know if she is right or wrong but she has an excellent reputation in her field.
They left your seminal vesicles at the time of surgery? Was that how things were done in 2010?
Yes. And I had one of the best surgeons at the time, Dr. Kawachi at City of Hope, who had done almost 3,000 DaVinci procedures. Maybe it's different now though.
No. That is surprising he did not remove the SVs. Mine was in 2007 showing SV invasion microscopically on one side. Led to prompt more aggressive treatment.
Original biopsy said Gleason 4+5=9, however post surgical biopsy through Bostwick Laboratory showed Gleason 4+3=7 all margins clear with no seminal vesicle involvement.
Ten years later when PC came roaring back to life, MD Anderson Dr managed to obtain 5 of the seven original slides from City of Hope and switched to a Gleason 3+4=7. Then just for the heck of it I recently had Dr. Epstein reevaulate those 5 of 7 slides and he confirmed 3+4=7. The question is what would the two missing slides show? That's why I proceed under the assumption my Gleason is likely a 4+3=7
SViking wrote --- " A conditioned hardcore athlete, at the age of 59 I had Da Vinci surgery in 2010 with Gleason 4+3=7, PSA 9 ... "
Not a "conditioned hardcore athlete" when diagnosed at age of 65 but first ECG had issues when recording heart rate since it was 32 BPM until the nurse told me to "get up and move around to elevate it for a good reading." At 39bpm she did the recording and made the comment that "guess you're an endurance athlete." At the time 150 to 200 mile/day bicycle rides were not a problem.
SViking wrote --- " Original biopsy said Gleason 4+5=9, however post surgical biopsy through Bostwick Laboratory showed Gleason 4+3=7 all margins clear with no seminal vesicle involvement ... "
Interesting reading your 4+3 approach in contrast to my 5+5 radical and most say extremely illogical choice
My urologists' 2015 TRUS came back with 5+4 right half with 6 and 7 in left half. Said goodbye to him after I had him perform my bilateral Orchiectomy and then went with Dr. Onik who performed his SATURATION Transperineal 3-Dimension Prostate MAPPING Biopsy with pathology done by Dr. Bostwick returning 5+5 right half and 6 & 7 left.
Chose a NON SOC approach having Dr. O's unique Cryo plus his immuno injection then began Testosterone injections. Still have most of left half of prostate in place, still biking and taking things 1 day at a time.
I love this! Even with my original Gleason 4+5=9, Dr. Kawachi was the only surgeon willing to cut. Others did not want to bother because they thought PC had already spread. Your Gleason 10 must have been rough.
My biopsy said 85% chance that the PC was already spreading beyond the capsule. I laughed and said, "85% chance that it has spread, means that there is a 15% chance that it has not. I never get odds that good."
My legs are pretty weak presumably due to ADT so I can only hike three, moderately steep ,miles six-days a week but I wrestle five, 7-minute rounds three times a week with a dojo full of young alpha males. (Most kick my ass but some I can hold off.) Then lift weights and do Yoga in between. According to the chest strap heart monitor, my resting rate is 52.
Currently doing intermittent fasting waking up at 5:00am and training at 6:00am. Feeding window is 1:00pm until 5:00pm. So far, I'm in a state of euphoria buzzing with energy until late afternoon when fatigue hits hard. I take Sundays off. Unfortunately my little brother refuses to rise even with Vitamin V. Next step is Trimix...
SViking WROTE --- " ...My legs are pretty weak presumably due to ADT so I can only hike three, moderately steep ,miles six-days a week but I wrestle five, 7-minute rounds three times a week with a dojo full of young alpha males. (Most kick my ass but some I can hold off.) Then lift weights and do Yoga in between. According to the chest strap heart monitor, my resting rate is 52... "
Awesome aggressiveness and I tip my bicycling helmet to you. Stay the course.
I also go to ucla but mainly for secind opinion and for SBRT to individual mets. It’s hard to believe that someone there told you not to combine your adt with Zytega and or chemo and it some other agent to “see what works”? Phase 3 studies have proven adding those agents early prolongs life. Who over there told you that. I know Dr Steinberg and he’s an RO not an MO. Hard the fathom he’s tell you that ?
Dr Dorf MO…formerly from UCLA now at City of Hope. I’m also aware of those studies which is the reason I asked her about a secondary agent. She said that if we eventually used one it would be Xtandi.
And Steinberg also did my SBRT, both times. He recommended SBRT immediately after PSMA scans showed micro tumors both times. He brought in a Neurosurgeon because of where mets were located.
Dr Rossi at California Protons advised to wait a few months to allow the Orgovyx to do its job then nuke with Protons. Steinberg countered “we don’t do it like that anymore.”
PSMA PET/SCAN will not usually detect lesions less than 4 mm,. Your cancer does not have micro metastasis even when they were detected by PSMA PET/CTs.
The lesions detected should be greater than 4 mm. It has to do with the spatial resolution of the machines used to do the studies.
It may be possible UCLA has machines detecting smaller lesions but they will not be microscopic ("so small as to be visible only with a microscope").
I did consult with Dr Scholz and believe that his videos reveal his extensive knowledge. However after paying the $400 consultation fee I was beyond disappointed like a few others I know who had similar experiences. (A very bad business model with his alacarte menu)
Probably time to stop doing whack-a-mole with protons. It is no longer serving you unless you have a painful bone met. Doing abiraterone +p before enzalutamide, along with ADT Orgovix, has been shown to be superior to the reverse order (enza then abi). Better still to use chemo in between when the first agent fails. Time to start a bone protective regimen such as Xgeva if you are not already on one.I second the idea of Lu-PSMA treatments if you have enough remaining PSMA expression on scan. But would need to travel and pay for it until it is approved here. Many waiting on that. Also check available trials but most are for mCRPC not hormone-sensitive. I would not wait if you have PSMA avidity.
Agreed. My first treatment for seminal vesicles 18 months ago was 35 protons with Dr Rossi. But afterwards when those six months of Lupron wore off PSA continued to trickle up. The last two treatments of SBRT were with Dr Steinberg at UCLA. He said that that we may end up playing whack-a-mole a few more times. Ho hum...
I have spent considerable thought towards your question, re "what caused the dramatic PSA rise from .29 to 4.9 within six months?". My personal thinking is that it only takes one pc cell, left behind from surgery, to lead to metastasis. A doubling of cells every 45 days would cause PSA to go up about the amount you are talking about, if unchecked by any treatment.
Beyond your question is a similar question, i.e. "when did the "recurrence" begin?" Using the 45-day doubling time, I get about about 7 months, starting at 0.1. With that guesstimate, I tend to believe that the recurrence came, not from metastasis, but from an entirely new pc cell, caused by unknown reason,
So that brings me to the question, "what is the cause of a rising PSA after prostate removal?" Well, the causes of pc are not known, but we have many ideas. Radiation, pesticides, inheritance,, certain plastics, and other things. High testosterone levels can cause more pc cell reproduction rate and thus more likely more mutations of cells.
It leads to a further question, "isnt it possible to develop cancer twice in the same body?" I don't see why not.
Not necessarily. Hard to form an entirely new 2nd PC when the prostate has been removed. More likely some PC cells remained (? In SV?) One PC cell or a thousand does not equal detectable PSA.
But if any prostate cells remained in SV then they could become pc due to and after radiation therapy. I agree, low probability. Also if one prostate cell was left behind after surgery, it could multiply to billions after ten years.
1. My PSA remained .001 directly after initial DaVinci surgery in 2010 to a rise beginning about ten years later during which it jumped to 2.0 in 18 months. Doctors guessed that my immune system had been compromised around 2018. I recall during that period I had three different rotater cuff surgeries under general anesthesia within one year. (First cable attachment failed) A PET scan then revealed lesions in my seminal vesicles which Rossi radiated with 35 Proton treatments during six months of Lupron.
2. After PSA trickled up again, Steinberg does SBRT on right pelvic bone without ADT. Then the PSA crept up again. But here's the kicker. Check the abrupt rate of climb from 7/29 to 10/27. That is what puzzles me.
I see. The increase in PSA without ADT is not a straight line. I have my own example to show you. In my case I took a four year vacation from ADT and it rose in pretty much an accellerating curve like a hyperbola, (due to consistent doubling). PSA finally peaked when I resorted to ADT . Every time I took ADT it dropped to <0.1, where it is today. I had RT in 2008 which dropped it to under 2 for a few years, when metastasis developed.
It is apparent that you you are still hormone sensitive, yet you doctors are trying to zap appearances of Pca with radiation.
My advice is to sit down with your doctors and discuss ADT treatment. Why did they stop Lupron? Why not continue Lupron, casodex, abiratorone, xtandi...?
My humble opinion. - it seems you might be swinging at the fences hoping for a rare home run. Very understandable. All of us have been there at some point.
However the SOC has been well studied over thousands of us and should give the best options available today.
Settle on a good well qualified MO that you trust and let them get you on systemic treatments that will extend your life.
With your history of low numbers, you should do well and still have many healthy years ahead.
First I am sorry for your recurrent disease. I understand and empathize with how hard this is to accept. I think the best article that explains what we are up against in prostate cancer is a Nature article that I believe has been referenced before in this forum. The link is nature.com/articles/s41467-.... Prostate cancer is polyclonal from the get go and that is what makes treatment so difficult. Even before I was diagnosed with cancer I was not a believer that cancer can be cured. I think it is always a race between how long you live and its urge to recur. The basis for my belief is that while my medical practice always focused on hand and upper extremity surgery I often was the only micro trained surgeon available for limb salvage and some head and neck free tissue reconstruction. During this period of my life I cannot count the time oncologists and oncologic surgeons told patients they were cured only to see the patient a decade+ later with recurrence. With that said I think you also need to accept cancer is not a local phenomenon. If everything was working properly with regard to immune surveillance, proper repair of genetic coding errors etc it would never happen in the first place.
So I think you need to from the get go accept the concept that if you are diagnosed with prostate cancer you have systemic polyclonal disease. What we have suffered from and continue to suffer from is in-adequate imaging (as well as many other things). PSMA PET/CT should drive that fact home if nothing else. In the future there will no doubt be additional targets for imaging other than PSMA as well as other therapy targeting these markers.
So what does this mean for you. IMO opinion yes you need lifelong ADT coupled with Zytiga or some other second generation antiandrogen (I have been on both for 3 years and 8 months). In addition, I disagree with the comment that targeted radiation for lesions defined by imaging is unreasonable. It is reasonable because these sites can also have metastatic potential and local control can be beneficial in terms of pain control. I would also consider, as has been suggest here, systemic radioligand therapy since you do have a positive PSMA scan and in theory this would have some action against macro metastases (i.e. imaged lesions) as well is micro metastases that are not detected by currently available imaging. Personal communication from Dr. Nat Lenzo in Australia also supports the concept that these two modalities can be additive in prolonging control.
The weakness of imaging and failure to use what we do have early is a recurrent problem IMO with prostate cancer care. When I was diagnosed in February 2018 if I new what I new now I absolutely would have went out of the country to get a PSMA PET/CT after I completed chemo and radiation. And if I hadn't done it then I sure should have done it when in March of 2020 I have slight bump in PSA that responded to a switch from prednisone to dexamethasone coupled with Zytiga. I did do this when I again has a rise in PSA in April of this year and PSMA PET/CT defined three soft tissue lesions in my left cervical area not imaged by standard CT. Without PSMA imaging I would have placed into the IMO outdated category of "biochemical recurrence"
This disease is complex and requires constant vigilance and use of every tool available. To get this you have to be your own advocate because I can tell you no physician is unbiased in there choice of treatment. Therefore, it is incumbent on us to find z physician(s) we trust and who is also willing to work with us.
Sorry I was so long winded but I hope this helps you in some small way with your future choices.
I concur with your wisdom and experience with our limited technologies.My analogy would be trying to detect Latrinos in space and further then that conception detecting or understanding dark matter.Cancerous cells are intelligent with there own morphology unique identities they constantly hiding and evolving maybe they have mass or maybe or physics are wrong.I’m no scientist or astrophysics member but it curious to me at least anyway that with accuracy we can send voyager satellite and with accuracy without any collision circle Saturn and still we be able to communicate with. I digress.I respect your journey and life commitment
Since you are still hormone sensitive the best would be for you to have 6 cycles of docetaxel chemotherapy in about 2 months when you are deeply castrated.
Pay attention to the feet and hands neuropathy.Ice gloves and ice socks help. DRINK LOTS OF WATER - STAY HYDRATED after sessions. Helps get the meds out of body and helps with constipation. Stay as active as possible.
wow - i read most of the posts here and im amazed how many different treatments there are. Its unreal. Im having a PET scan on 11-29 at Kaiser - my PSA is 2.3 - (recuurence) - 2010 surgery - CT and bone scan came back negative which is why my urologist wants me to take the PET scan on Monday. Im not sure if i should hope for negative results from the PET scan or should i be better off if they locate the cancer and maybe use radiation to zap it?
Currently still on Orgovyx and feeling pretty good all things considered. My testosterone as well as PSA, are both at zero. I’ve been getting blood tests performed once a month for last four months.
I will get another blood test next week. Can one anyone advise me on different things to get tested for? Also been on Xgeva for the last three months with a recommendation to get a shot only once once a month.
Instead of taking calcium supplements with vitamin K, I eat full fat, grass fed organic Greek yogurt every day and I assume that I’m getting enough vitamin K from all of the broccoli and greens that I eat. Would this be sufficient?
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ADT w/ Heart History
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