I am nearly two years out from RP, Gleason 9, negative margins and no evidence of spread. I am an otherwise healthy, active 68 year-old and feeling good. PSA has steadily ticked up from 0.009 after surgery to current 0.091. My surgeon, MO and RO at University of Pennsylvania all agree, given my trajectory and GS9 that early salvage RT with 6 months of ADT is appropriate at this point. My RO however suggested that since my PSA is still well below 0.2, I might consider waiting a bit to start RT/ADT to assess the pandemic situation this winter and avoid unnecessary risk of exposure to Covid-19. He said there is no rush at my PSA level, and data does not exist to suggest that starting ADT/Salvage RT would be any more successful by starting now or waiting until it gets closer to 0.2. I lean toward starting now and tend to trust the pandemic safety measures that U of Penn has in place.
Three questions for the group: 1) How much would you consider the Covid-19 risk in a decision to initiate RT now vs waiting; 2) Is anyone aware of any studies that show early salvage RT with ADT is any more effective by starting at PSA < 0.1 vs. 0.2? 3) My RO says no need additional scans for metastasis and that nothing would show up now anyway at my PSA level. However, my PSA at diagnosis was only 2.1, causing me to think my PC may not produce a lot of PSA. Does anyone have an opinion on whether to push for a scan prior to starting RT?
Many thanks.
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B_Sprout
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The scans with the higher detection rates at low PSA are the PSMA PET/CT scans. The doctors in Germany recommended that I have the Ga 68 PSMA PET/CT when the PSA was 0.4 or higher. When the PSA is 0.2 or lower the detection rate is around 30%, with a PSA around 0.4 the detection rate is between 40 to 50%.
Yes, thanks for your reply. I agree. Case count in the state and local counties where treatment is taking place are a definite factor. We’ve been reasonably stable in the Philadelphia area with a bit of an uptick lately.
Yes, relatively low covid transmission risk currently with the safety protocols in place. We just don’t know yet if things could get significantly worse this winter.
In my opinion it is the most concise and well documented relative piece of information.
Notice that it only has 163 views!!!
The low number of views is compatible with the usually simplistic BS doctors treat their patients.
Somewhere in the middle there is a graph taken from of a study that depicts RT success probability vs PSA at the start of RT. I am in a similar stage like you and if memory serves the regression curve shows a decline of 2-3% between PSA of 0.1 and 0.2 (max success rate at 0.1 is somewhere between 60-70%).
Regarding scans, I have writen this a number of times, the problem is not the scan itself, but the ignorance or reluctance of the treating RO to adjust the standard planning to the individual findings or lack there of. PSMA PET/CT takes a RO that knows, is willing and be able to do something with it. This includes the available equipment both in hardware and planning software. So, the answer to your question is if you can't find a competent RO, you will be throwing money out of the window.
2)Early salvage is better. Starting SRT when PSA is 0.1 is no worse than starting immediately. But the longer you let it go, the higher the risk that it will become incurable:
3) You are raising a good point that you may have a low PSA subtype. It may be worthwhile to rule out distant metastases. I don't think your insurance will pay for an Axumin scan until your PSA reaches 0.2, and most of the places that offer PSMA PETs for recurrence on clinical trials also want a PSA ≥ 0.2. I don't recommend waiting, given your PSA history. You can pay for a PSMA PET scan at UCLA:
For those with normal expression of PSA, waiting for PSA to increase over 0.2 translates to twice as great a chance that salvage radiation won't be successful:
That's why I cringe whenever a patient says he wants to wait for his PSA to rise so he can see his metastases on a PET scan. It's a self-fulfilling prophecy. The vast majority of metastases are always too small to be visible on any PET scan.
Biopsy PSA was 6...surgery was 8...post op at 10 weeks <.001 last October...last PSA in June was .08 for 2 months. Going for my next PSA tomorrow after 2 months of the Costello paper regimen of daily Clioquinol cream (3%) and Zinc Ionic supplement. I am also getting full blood panel and Testosterone...awaiting my DECIPHER test results via mail...reviewing all with URO on Thursday...shooting for Early Salvage Radiotherapy and 6 month ADT treatment at .1 PSA. My 2nd opinion you recommended from JHopkins was basically the same as first 95% 4 and 5 % 5 = 9 Gleason but added secondary at 3 +3 = 6. Clear seminal vesicles and 1 lymph node with microscopic PCA from RP surgery 8/2019.
I am curious, do you know if percent of tumor involvement of the prostate affects PSA? My post-op surgical path indicated that only 10-20% of my prostate was involved. Regardless, I have decided to proceed asap with adt/rt. I appreciate your and everyone’s support.
This article indicates that in the RADICALS study the trigger to start early salvage radiotherapy was a PSA >0.1 , and in the GETUG-AFU 17 and in the RAVES studies the trigger for eSRT was a PSA equal to 0.2 or higher .
So in my case I did ADT (January through August) and radiation Feb/March/April smack in the middle of Covid in the northeast US. I see you are at Penn. I am being treated at Fox Chase.
No issues. Lots of procedures to get into the building.
A nodule was discovered on my prostate by my GI doc when I had a colonoscopy. He recommended I get it checked out by a urologist who did a manual exam and ultrasound and felt it was suspicious enough to do a biopsy. I was shocked at the results which were done by his pathologist and confirmed in a second reading by Penn pathology.
I am a believer in nuclear bone scans with soft tissue CT scans. Old but reliable. You probably had a base line of these scans when first diagnosed and again at RP. Two years later, why not? Compare and see what is revealed.
I was told by several Dr.s that a bone scan rarely shows PCa in the bones unless PSA is at least 10 and more like 20... not that cancer may not be there in micro mets ... possibly in most people ... they say 70% of 70 year old males have micro mets --- 60% of 60 year olds -- 80% of 80 year olds
Started Radiation at MSK White Plains NY 4/31/20. Completed 7/1/20. with 4 months ADT. Stay Active You will be fine MSK Protocol for Social Distancing and Temp taking not the Best But no infections I was aware of
You know what the situation regarding Covid-19 is in your area at this time. You don't know what it it will be like in three months. Does it get tied in with the run of the mill flu and take off? Will there be a second wave? No one knows what the future brings so I would opt for treatment ASAP. A side benefit of getting it done now is not having to deal with any snow storms in the Philly area this winter.
My initial advise would have been to follow the MOs lead and wait until the PSA gets higher for PSMA/CT scans, BUT, based on what T_A and a few of the well respected 'elders' have stated, I would seriously consider their approach to your current state of being.
The fact that you've had a history of low PSA readings, would make you somewhat less typical, in terms of what most of us have seen in the earlier stages of the disease.
Waiting for a BCR (and acting on the signs of progression) has used baselines that were based on nadir + 2.0.
That doesn't seem to fit the bill for you.
Better safe than sorry and a few months of ADT would not be something that should leave any long term SEs - hopefully, you can find an MO that will follow the science - allowing for an earlier intervention to try to keep a 'cure' on the tale.
About Covid - follow the protocols to keep yourself safe - you shouldn't avoid / delay suitable treatment because of it. Follow their practices while seeking treatment. I know that covid has caused so much collateral damage and in the USA, you could wait a very long time before t gets resolved.
Up here in Canada, the youthful idiots/ students and partiers have set off a second wave - those $^&^%#* would need a ball and chain to control their stupidity and selfishness.
From what we see north of the border, your country is in denial about how serious this can get - but the innocent pay a steep price for the follies of the many.
You need to care of yourself and your loved ones with a sense of awareness, with due diligence.
It seems if pre SRT PSA is <.6 your disease MIGHT be localized to the prostate bed so SRT still has a chance at "curing" this disease. PSA scores >.06 point to metastatic spread making continued long term ADT a better option.
Tiny "crumbs" of the prostate might have been left behind after an RP.
Don't wait. It might spread. Earlier is better. Isolate, a vaccine is on the way.
Your call..... but you may want to consider my experience.
Radiation - I've posted this before so to those people who have already seen this please forgive me.
Three years after my RPD:
I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also I don't know if this would apply to you but guys here recommend "SPACEOAR HYDROGEL" to be inserted for protection of parts of your body. Make sure you ask your R.O. about the spaceoar and make sure you ask here on this forum before getting fried.
TO PLAY THE JOHN FOGERTY VIDEO ABOVE CLICK ON THE NAME OF THE VIDEO ON THE TOP OF THE VIDEO.
Oh Wowsa Wowsa.... What a treat!!! If that doesn't make you get up and dance, then you can be declared legally dead. My wife and I were line dancing. Thank you, Thank you, Thank you...
Question do you know what specific PSA test you receive that went to at least the thousanth or three decimal places.
You showed 0.009 as apparently a nadar for you.
I'm working downward toward my nadar. This is after RP May 2017 and 33 sessions of PBLN IMRT in Oct - Dec 2019 while on Lupron begun July 31 2019. Lupron will be for two years.
My PSA at imaging prior to radiation was 3.9 which dropped to 0.3 on last blood test prior to radiation.
Then 0..032 in May 2020 and 0.024 Sept 2020. These were at the same doctors office with tests thru lab Corp.
I will be in another state for my next one or two PSA tests. Which I will try to obtain tests to three significant decimal places.
But there was some discussion on this site in the past year of these PSA tests not reporting to for example 0.001 or 0.000 but perhaps cutting off at a higher level than they had earlier.
I'm wondering if my PSA continues to drop whether I'll see a exact amount say for example 0.008 or might I get a <0.016 instead.
I'm hoping to follow it down as far as it will go.
I know many will say following it to such low level doesn't affect treatment and can cause anxiety, but at least for now while it's dropping I'd like to see how close to zero I can get.
I'm 69 and in my third remission with excellent health. My RP pathology was Gleason 4+3 in 2006.
I've been more aggressive than most guys with treatments at each step, and I think I might have had even more success with even faster diagnosis and faster treatment. Before diagnosis, when my PSA doubled from 1.2 to 2.4, I should have gone to quarterly or monthly PSA tests instead of annually. And when I had my first recurrence after RP, I should have started IMRT when my PSA hit 0.12 instead of waiting three more months when it hit 0.20.
Every doctor I've ever heard speak has indicated that they believe the earlier the treatment, the more effective it is (regardless of which treatment is chosen). I view my cancer as a war in which I need to win every battle decisively and quickly. If I don't, the enemy will grow a little stronger every day and become more and more difficult to battle the longer I wait.
My view has been shaped even more by attending many dozens of support group meetings and conferences, and observing the journeys of other guys in addition to my own. This year, two guys in one of my support groups lost their battles. Neither guy used aggressive treatments from the outset. I completely respected and never questioned their decisions, but I've seen the most successes in guys who were aggressive in their treatments at each step.
I don't expect COVID risk to change much if any over the next 9-12 months or so.
I think you have a dilemma because you don't know if your Psa rise from 0.009 to 0.09 is from Pca in PG or from some place where Pca has spread.
It seems you had enough Pca which qualified to be get a Gleason score of 9, but with a very low Psa.
In Dec 2009 I also had a Gleason 9, with Psa at 6 when biopsy was done which gave 9 positive samples out of 9 taken. Uro opened me to remove PG in April 2010 but it was found to be inoperable because too much Pca had come outside the PG capsule. But more biopsy samples were taken for pathologist to look at with microscope but no local spread was found.
So I had a lot of Pca with a low Psa, which meant I was diagnosed too late for RP. But you seemed to just be lucky to have an RP with low Psa even with a Gleason 9.
My Uro said he only found 1% of his Pca patients were inoperable. He was doing about 2 ops per week.
After April 2010, I began 2 years ADT after failed op, with 70Grey EBRT scheduled for Dec 2010, which was when PG size was smaller due to ADT, so that RT beam size ( with high power X-rays) could be kept small, to avoid the normal amount of damage to function of the rectum.
Psa was about 2 when EBRT was done and it went to nadir of 0.08 at 2 years of ADT.
Then I paused ADT, and within 2 months Testosterone level became normal and in 6 months Psa was 8, so I wrote to uro doc to say his treatment had failed and asked to be referred to an oncologist to "see me out".
He didn't much like that, but gave me the referral.
Onco restated me on ADT, Psa went to 0.2 nadir, and I am still on ADT.
But 2016, Psa crept up to 5 and I went to Melbourne where a hospital offered IMRT with Calypso for salvation RT. I had my first PsMa scan and two small mets were found in 2 upper thorax lymph nodes. I had added 31Grey of IMRT to PG and 45Grey to the 2 mets.
I was first in Australia to get salvation RT to PG where primary treatment to PG had been EBRT.
A Dr Shultz in USA had written and article to American Journal of Clinical Medicine in 2011 saying that he had 47 cases of remission with the treatment I got. But there was no evidence at all that he had a 100% success rate as his AMCJ article implied. I thought the article was too good to be true. There was no clinical study or trial and maybe Dr Schultz had 47 remissions out of maybe a much higher number of patients where outcome was far less successful for most. Anyway, I went ahead with salvation RT.
I was also put on Cosadex, because it was common belief that ADT with any kind of RT worked better to kill Pca cells than with RT on its own, but that also seemed mythical and Cosadex was probably added to my ADT to make it look like the salvation RT had worked. The radiation doc said "this RT will definitely kill the Pca in your PG.
But a year later, Psa was back up again to about 6, and another PsMa scan showed a lot more soft tissue mets plus mets in my bones, plus PG still had a lot of active Pca.
BTW, before the salvation RT, hydrogel pad was placed between PG and rectum to stop damage to rectum but 1 month after IMRT was done, I became a shit spraying machine with large amount of radiation colitis that lasted 2 months. But that all calmed down. But my pooing function became changed, and if I have to go to "choke a darkie", I must go NOW, or I have a SIPE, ie, a "shit in pants event" so I can't delay pooing when I feel bowel wants poo to exit.
It also seemed the salvation RT had not worked.
So I went on to Zytiga that gave me 8 months of Psa suppression, then Psa was back to 6. I then had chemo which pushed Psa from 12 to 50 in 5 shots, so I quit that and went to Lu177, which seemed to b the most successful thing to kill my Pca mets which had become countless in lymph nodes and bones. The first 4 Lu177 shots in 2019 seem to have killed all soft issue mets, but left more work to be done on bone mets. Docs put me on Xtandi after 3rd Lu177 to boost Lu77 action, and it may have worked, because Psa went from 25 before Lu177 to 0.32 a year later.
But then Psa went back up to 30 in 7 months and I am now having a second round of Lu177,
and 5th shot was last July, and Psa is now about 10, and 7th Lu177 is on 2 October 2020.
So if I were you, I'd be thinking that from little things, big things grow, and I'd get your PG operation site radiated. But it is just not always successful if your Pca is resistant to RT.
My Pca in PG didn't die with RT, and probably needed a bigger dose that may have caused more side effects and damage. How do you know if RT is going to work? By trying it.
Gleason 9 PG tumors are renowned for spreading mets. I may have had many by the time I was diagnosed but all may have remained too small to be seen by any scan and the ADT I had begun in 2010 kept them all too small be seen until Psa went to 6, and and I had a PsMa scan in 2016, and only two tiny mets showed up. Many more mets showed up in more PsMa scans as years went by despite docs keeping my Psa fairly low with Cosadex and Zytiga added to ADT.
My QOL since diagnosis has been fine. I worked on until I retired from work in 2012 at 65.
I have continued cycling 200km+ a week to stay fit as I had since 2007, with some interruptions for Pca treatments and to get both knee joints replaced in 2017 when Psa was a low 0.8.
Last week, at 73yo, I did 226km and at good speed same as most of the fittest fit men my age who have a normal testosterone level.
Last Tuesday was a beautiful spring day and I did a good 100.0km. For last 5 years, not one man over 60yo has overtaken me on my 3 cycle rides a week around my city.
So despite the threat that Pca may kill me, I've carried on as if it will not kill me immediately, and I've now lasted nearly 10 years since Dx, and maybe Lu177 may give me a couple more years, and maybe PARP therapy might work if the DNA analysis I am now having done indicates it is likely to work. I am handling all this Pca battle alone because I wasn't very lucky with getting any lady to stay with me for a life journey; all I met had plans for other than ever settling down. I'll never marry again, so complete ED after getting Pca treatment has not bothered me; a 2 hour ride on a bike is probably better for me than a 2 ride on a woman. That is the horrendous little reality for me.
I have grown to be quite happy being alone, and I'm having a good life.
Its been raining well here and farmers are very happy with spring rains.
Its Sunday, and normally I do a long cycle ride, but I already have 226km for the last week, and don't need to ride until next Tuesday. I've got other stuff to do.
Patrick, you are an inspiration ... you are beating it down pretty good. Keep up the fight -- they are making progress with immuno therapy ... is there a max number of Lu177 doses you can safely take over a lifetime or does it wear off and have a short rage of action?
The effectiveness of Lu177 is a bit hard to understand if you try to find a definition of effectiveness, and typical claim is that 70% of Pca patients have a good outcome, and there are just as many of these who get 14 months or more extension to their life as the number who don't get 14 months or get less.
I would define a good outcome for Lu177 is where a man has a PsMa Ga68 scan which shows he has good uptake of Ga68 for the scan just before initial Lu177 infusion.
If Ga68 shows the PG and mets well, then Lu177 should go to all those places seen in scans, thus Lu177 should work well, which may mean that if his Psa is 50 before Lu177, it will much reduce during a number of infusions, usually 4, and if his Psa is 50 again after 14 months then his Pca is not seen as any worse than when he began, so he got a benefit. If he had not had any Lu177, and chemo didn't work, then after 14 months he may be in palliative care, waiting to die.
I did slightly better because time for Psa to rise to what it was before Lu177 was about 18 months.
There are complicating factors. If a man has Pca that cannot be imaged by PsMa G868 scans, that variety of mutated Pca will not be killed by Lu177, unless it is mixed up with Pca at met sites which do have Pca with Ga68 affinity. But Pca mets which don't have any Ga68 affinity can only be seen in FDG PET scans. So a man may have much of his Pca killed by Lu177, but the Pca that can't be killed by Lu177 just carries on growing.
I had 4 x Lu177 infusions between 4 Nov 2018 and 29 May 2019. In August 2019 a follow-up PsMa scan showed many bone mets healing up, but a couple were not seen to be fully killed. All my soft tissue mets in lymph nodes were not shown in scans.
That looked like a good outcome, and Psa was trending down well below 25 when I began. But I feel much of that trend was due to Xtandi which I began in April 2019 which was thought to make Lu177 more effective. It was said that although previous Cosadex and Zytiga only worked for awhile, the 5 doses of chemo I had would have re-sensitized my Pca to respond again to either Zytiga of Xtandi. But Psa reached a nadir of 0.32 one year after beginning Lu177 when Psa was 25, but I feel most of that drop was due to Xtandi and without Xtandi, the drop in Psa would not have been anywhere near as low.
Psa soon zoomed right back up above where is was last November and maybe because Xtandi had ceased working. These anti hormone drugs never gave me a lasting suppression of my Psa, they forced Psa to go low, and then within a short time, Psa went back up.
So I was amoung those men who might get another slab of time without huge rise of Psa if I had more Lu177.
In June-July this year 2020 I had both PsMa scan and my first FDG PET scans. PSMa scan showed zero soft tissue mets again, but I did have some bone mets which which had been reduced last year, but now were growing again.
The FDG scan showed I have no mutated form of Pca. If its there, its such a small amount its not showing up in scan.
Peter Mac Hospital in Melbourne has researched into why some men get such a poor outcome with Lu177, and it seemed that mutating Pca is to blame. During the process they found men who'd had 4 Lu177 infusions and who still had some live Pca could be treated with a couple more Lu177 which should be just as effective as first 4 infusions if that had worked to reduce bone mets. So I went ahead with 5th Lu177 last July 24, when Psa was 30, and Psa is now about 10, and this reduction is much more than the result after No 1 Lu177 in Nov 2018 where Psa remained at 25, and didn't begin to go down until after No 2 Lu177 in Jan 2019, when Psa sagged to 17. Not much of a result. Better than a run-away rise though.
Docs are keeping me on Xtandi only because its thought to boost PsMa expression at my bone mets. I will be having another 10 days of Veyonda to also help PsMa expressions at my bone mets. The higher the PsMa expression, the more the Lu177 is attracted to the mets sites, so the nuclear blasting with beta rays is more intense, so it is assumed less Lu177 shots are needed. It is hoped 2 shots Lu177 may be needed this year. I am thought to be healthy enough to withstand the additional shots. I don't have a dry mouth, and cycling speed has not dropped, and immune system seems fine.
If the Psa drops to a nice low value by November, then may I won't be given any more Lu177 until sometime next year. Two more shots could be given for a total of 9, and then the problem is that the number of shots of Lu177 any man can have is thought to be 10 because accumulated damage to some parts of my body would make me sick, maybe give me Leukemia, and then Pca wins.
Meanwhile maybe PARP can at least be tried within next 12 months, and docs and myself have no idea if that might help me last a long time with having to have too many Lu177 shots. I know a man who had 7 shots of Lu177 in a trial in 2016 at PeterMac, I think he's still alive, his Pca was far more advanced than mine. Dr Lenzo of Theranostics Australia said he knew there was a man in Germany who had 10 shots Lu177. The Germans invented Lu177 treatment with a ligand chemical, but ever since efforts around the world have continued to make Lu177 more effective than it was initially in about 2014.
BTW, Lu177 and the PsMa scans that go with it can be expensive because its not fully approved. Its only available here in Australia because if a man fails with chemo, he is entitled to seek alternatives which are not fully approved, but these treatments are not funded by our Medicare, and maybe not by insurance companies.
Each Lu177 infusion costs usd $7,000 approx in Australia, PMa scan costs usd $500.
Such a good fall of rain this morning, but its clearing up now with some sunshine.
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