Post RRP in 2009 and now having BCR with PSA rising to .20 over the last couple years, I was offered and opted for a PSMA Petscan to see if there was an identifiable spot of recurrence that could be treated early.
The PSMA scan came back with no indication of the PSA source, so now I am wondering about next steps. (At least I have a baseline scan now.)
Obviously, I will continue to monitor PSA for doubling time.
My question is whether, or when and how to proceed with either hormone and/or salvage radiation, given a negative PSMA scan.
What level of PSA, or DT should trigger considering treatmentn these days.
Anyone with experience or opinions?
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hogwell
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It would have been surprising if the PET scan, at your low PSA, showed anything. The decision remains exactly what it had been. There's nothing in your profile so I have no idea what your situation is. Perhaps this will help you:
Thanks for the link Allen. Your site is always informative.
I went ahead and added my history to my profile.
I'm actually hesitant to start any treatment yet at my low PSA.
It seems in the past, starting with a "shotgun" SRT treatment to the prostate bed was the approach, but I'm thinking that the advent of PSMA scans to find localized spread might mean that it would be more prudent to wait for a PSMA detection in a scan before starting radiation. HT might be a different story.
No, don't do that - it's a recipe for disaster. You have a distorted notion of PSMA PET scans. They are not very sensitive - only 40% sensitivity for pelvic lymph nodes. By the time you can see them on a PSMA PET, you have increased the likelihood that it has already spread microscopically to places such that it is incurable. You have to make the decision about whether to have SRT based on other risk factors, which was the point of the article I linked. A new analysis (not yet published) showed that treatment before PSA rises above 0.25 is imperative.
So you're saying SRT aimed at the prostate bed (even 14 yrs post-RRP) and level 2 HT based on PSA rising to .25 alone might be a way to think about this?
(I thought the main point of your article was comparison of ADT vs. SRT results in more pathological cases than mine.)
Thanks for the link. Not quite my situation, as you say, but useful information.
I'm still not sure the best path forward yet for me, but will keep learning and checking my PSA. Pulling out the RT guns before knowing where the mets even are seems a little crazy (but I suppose the pelvic lymph nodes are a likely place.)
Based on my history (a long time post RRP for G7), what level of PSA or PSADT should I be watching to start radiation. Or maybe start with just ADT? Or both?
"Pulling out the RT guns before knowing where the mets even are seems a little crazy (but I suppose the pelvic lymph nodes are a likely place.)" It only "seems a little crazy" if you (1) do not understand the natural history of progression and (2) vastly overestimate the ability of scans to detect the cancer.
I re-read your link for the recent study showing better outcomes for high-risk patients receiving SRT before PSA reaches .25. It is compelling and it's hard not to think that it could apply to cases like mine also that started at G7 14 years go, but who have PSA now approaching .25. I wish the study had included patients like me also in their study.
I think my Uro thinks that my negative PSMA Petscan means I should just forego SRT and just go on HT when my DT shows < 10 months. Why target the prostate bed after 14 years when we don't know where the metastases are occurring, the argument might go.
My thinking is that SRT might give me one more chance at a "cure" before going on lifetime ADT, which only delays progression.
Not that I'm looking forward to starting either HT or SRT!
My Bicalutamide maneuvers thread documents my doings.
There is nothing in your profile to indicate a future path. What does your Medical Oncologist say? Have you had a comparison Nuclear Medicine Bone Scan, you would have had one in 2009 to serve as your baseline today. Accounting for arthritis or injury, it’s a great diagnostic tool to determine any spread. I had my first scan in 2003, 27 scans later, always accompanied with a soft CT scan of my body, I have an excellent picture. Then agsin I have been a “guinea pig” for research since 2004. Best advice, quarterly PSA and T blood work, plus the accompanying CBC and LP; and then enjoy life, Your rise could be from your Parathyroid or Kidneys with an undetected Urinary Track Infection, etc. Hevk if you are really concerned, simply start quarterly Lupron injections and continue to monitor with blood work..... Discuss with your Specialist. Hopefully they are a pro in Genitourinary Diseases. Best wishes
No, a small one time rise is not indicative of cancer. I looked at your history and in your case, the continuous rise in the level of PSA is indicative of a return.
You have been very fortunate to have had 14 years before recurrence; I had PSA at 0.13 only 6 weeks post RP...now consider carefully what to do before you go on ADT...I dont know a lot about your background, but ADT is a wonderful treatment which can also do some harm to body functions. A lot to unpack here...
First, are you a candidate for ADT treatment? I did not know that Decipher has a report that can tell your doctor if you are a good patient for this medication. If not why take it? I did not know this before I went on ADT Lupron and have spend a total of 21 months on the med. Check this podcast out at Min 16:03 and 17:25;
Next, did anyone advise you of the impact ADT has on penile tissue and ED? No one tole me about many of the impacts. Now, I dont know what level of ED you have, nor if sexual relations are of any import, but if these are important think carefully about ADT. ADT will impact both of these fundamentally...check out this podcast. Its a overall explanation of what ADT does to men; much of this I did not know before I started on it. At MIN 11:17 the moderators talk about ADT with and without RT (radiation)...this podcast has a lot of information that is good to know before you consider ADT treatment.
Now, if ADT is right for you it does work. Long term ADT (LTADT) used in conjunction with low dose radiation (LDRT) makes a difference! This study is what helped me conclude that LTADT treatment along LDRT (salvage radiation) was the right choice for me (thankfully, as I had already done the treatment). So, if you need ADT and are ready for its consequences, it can help. Check out this post;
So, make sure you will benefit from ADT and understand what happens to you when you lose TET…it did not bother me at first, but it begins to weigh on you as the months go by. Understand that if you have not lost penile tissue health that you will when you lose TET and are on ADT; it’s a 100% given. So, make sure you will benefit from ADT before you use it.
Also, see if your genomic testing (like Decipher) puts you in a high risk group. My Decipher score was 0.97 out of 1.0, so I had a lethal cell type that had to have aggressive treatment. A Gleason alone wont tell you this; you need genomic testing along with the GS to help make a good decision. I recommend Decipher but there are other tests; check out this mapping of genomic testing;
Good luck and let us know what you find out and decide. Rick
PS for PSMA PET you are at the start of the PSA window where it may work…I would get one now and take more if PSA continues to rise…I saw one case study where the patient took three scans, starting at low PSA levels, until they found the source. Doctors thought it was a waste of money; not me! I would have done the same and in no way wait and let the PSA rise, just to assure better scan Sensitivity (finding the cancer)…find it and kill it as early as you can1 Hope this podcast helps...
I will post this podcast which is from UCSF...the patient started at 0.2 and got three scans as PSA went up...again, Doctors on podcast said this was 'wasteful.' Yeah...none of them had PCa either...get as many scans, as early as you can and find this fuc#er as early as possible and kill it again...that is my philosophy...Rick
The main problem would be to get the perscription...as long as you can get that the scan would / should be covered. But what I experienced is dragging of feet for the scan; suddenly they are worried about cost! That's rich as when you get any final bill its for tens/ hundreds of thousands of dollars it seems...but, that is what I would expect. Get the script and get a scan as you go...I would not wait until the PSA is high enough to assure 95% plus Sensitivity, i.e., finding cancer...for me a 50-50 shot is good enough...then repeat if the PSA goes higher...look again at two things; 1) what genome of cancer cell you have and 2) PSADT, doubling time, in order to decide on how aggressive to be...Rick
The sooner you get salvage radiation, the better chance you have of it being a "cure". It gave me 7.5 years of undetectable PSA. Based on everything I've learned, letting cancer grow is a pretty big risk. If you let it grow too long, you can probably forget about a possible "cure".
I did not have ADT with my salvage radiation of the local area. I have no idea whether ADT might have given me a longer remission, but I view 7.5 years of remission as a big success.
Whereas ADT is not curative, radiation might be curative. My negative side effects from two separate rounds of radiation have been very minimal compared to the negative side effects I had from ADT during my second round of radiation.
Personally, I think waiting on advanced cases (and allowing cancer to grow) is a losing strategy.
I had a radical prostatectomy in 2009. PSA was 0 after that. In 2018 PSA was .18 . Urologist advised salvage radiation if it came back.2. It came back .3 and I had 39 sessions of salvage radiation. There was no change in my PSA. I was having my PSA checked every three months with ultra sensitive PSA test. It has been slowly rising. 2 years ago or so I had aPET scan with Auxim and they didn’t locate anything. PSA continues to creep up, except when I did KETO diet and it dropped from.52 to .44. Well recently tested and was.76 did pet/ct with PSMA which id’d 2 tumors in the lymph nodes. Met with oncologist and radiation oncologist. I am 69. I was advised against drugs, but could do SBRT . Today is my 4th day. I feel a little fatigued. Told this May last for 2 to 3 weeks because treatment is cumulative. Plan is to monitor psa every three months and do another scan if necessary next year or so.
they are just focusing on the 2 lymph nodes 7 gy on the tumors and 6 gy on the surrounding area. So that is 35 gy after the 5 day round of sessions. I believe the larger of the 2 tumors is 6mm
Well, sigh, I just finished my telemedicine appt with my Uro.
As usual, the local clinic did the wrong PSA test (not the ultrasensitive) so I really don't know where I stand, except the regular test came back ".2", which doesn't tell me much. Do others have this recurring mistake in lab tests? This isn't the first time for me.
He's putting in a re-order for the correct test next week. (It's hard to see a DT without the data!)
I did mention the idea of starting SRT based on PSA rises and DT, and he thought HT alone would be the first step, which surprised me.
Got my Ultrasensitive re-test results today, PSA came back .211. So I calculate a DT of about 18 months from the last valid 3 measurements.
I'm not sure where this leaves me in terms of future treatment options with my negative PSMA Petscan.
Maybe:
1. ADT only when PSA exceeds .25
2. SRT only when PSA exceeds .25
3. ADT+SRT when PSA exceeds .25
4. Above options, but when DT becomes < 10 months instead of a specific PSA.
I'd like to get an opinion from another doctor on this, preferably in Western Colorado.
My Uro doesn't seem to want to consider treatment this early.
Maybe it's too early for treatment, but it seems like others on this forum have started treatment when PSA is getting in this range, and some of the studies posted on Tall_Allen's website seem to point to early treatment as best (not that I'm excited about starting HT or RT!) I don't want to give up on the idea of a cure, not yet...
Anyone have opinions or more experiences to share?
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