Weird situation here. Had a prostatectomy at Hopkins in early 2018. Organ-confined but Gleason on pathology was 4+5. For a little over two years PSA remained undetectable...and then, well, I kind of slacked off the test. Stupid and reckless on my part.
After a roughly 3-year interval I recently got the test done and it came back at 6.9. Big trouble. Doc ordered a PET/CT, fully expecting it would show cancer in the prostate bed and lymph nodes at minimum. The question was would it also indicate metastasis to the bones or other organs. At this point, I was resigned to my fate.
Then last night in a bit of a shocker (to me at least), the test came back clean. Totally clean. No sign of prostate cancer anywhere. The read-out says it was conducted with no issues. They got a good look. I haven't talked to the doc yet. The results arrived in my Patient Portal.
Meanwhile, the doc had already scheduled me for an appointment on September 14 to receive a 6-month dose of Eligard. Not sure what to do now. Another PSA test? Another CT scan? I mean, why would I subject myself to the Eligard if the scan shows no prostate cancer? Am I missing something? Thanks for any thoughts on this...other than the obvious thought that I'm an idiot for blowing off the PSA tests for three years.
Written by
Nittany
To view profiles and participate in discussions please or .
PSMA PET/CT ? If yes, there is a cancer variant that doesn't express PSMA. Other PET imaging, or even good old scintigraphy (bone scan) may be able to detect something.
Thank you. I gather it was a PSMA CT. The readout says they injected 68Ga-PSMA-11 with "physiologic distribution of radiotracer noted in salivary glands, lacrimal glands, blood pool, liver, spleen, pancreas, ganglia, bone marrow, bowel, kidneys, and urinary tract."
Yes, this is the one, offered only by two institutions in California. Its highest detection rate, for elevated PSAs like yours, reaches a ceiling of 94-96% as this is the occurance of the non-expressing PSMA variant. In the US, that I presume you are, there is the older Axumin scan. Check it out. Choline PET scan is 3rd in detection sensitivity. Good luck.
Thank you! Large family here praying for a miracle, so a lot of people's first thought was to hope this was it. I reckon miracles aren't covered in the medical protocols.
That aside, could I ask if you think I should go ahead with the Eligard on September 14 or try to get the scans nailed down first.
Scans first, until then a 1st gen anti-androgen like Bicalitamide will slow/stop progression. Only SE gynaecomastia that 10mg of Tamixifen can take care of.
Thank you. Yeah, I'm just looking on drugs.com and Bicalutamide appears to get the nod big-time over Eligard in terms of user tolerance. Granted, horror stories tend to predominate on such sites, but still.
Just another reason to get in touch with Hopkins. I like my doc but he's basically a small-town urologist, and I think medical experience and expertise in the treatment of prostate cancer is of the essence now. Hopkins fills that bill.
There are at least 3 lines of PC that PSMA misses. Choline and probably Auxmin would pick them up. FYI my first detectable cancer post op was in my shoulder.
Thanks for the suggestion. At this point, I'm leaning toward going back to the prostate team at Hopkins. I was on the verge of making an appointment for a consult, but they suggested I wait for results of the PSMA PET scan first in order to nail down the specialist I'd be seeing. At the moment I'm being treated by a Pennsylvania urologist but am only an hour or so drive from Hopkins.
It doesn't mean you have "no cancer," it just means your tumors are too small to show up in scans. Tumors have to be over 5 mm and express PSMA to show up. You have to take the shot to keep it small.
Thank you. Yes, I'm dialing back the miracle talk in the family.
The thing is, with a PSA as high as 6.9 and some persistent possibly related symptoms of periodic discomfort (especially at night) in the right pelvic area, I was ready for the worst in that radiological report. But then it came back a big fat negative -- negative even in the prostate bed and nearby lymph nodes, which the doc was all but sure would show cancer spread.
Still, notwithstanding a study indicating the test is 95% accurate when the PSA reaches 7 or higher, I guess that still leaves a 5% false negative rate.
I had 2 clear PSMA's with PSA at 2&5, yet an FDG picked up 4 distant bones mets. A percentage of your cancer might be transitioning into some form of mCRPC
I too relied on a small-town urologist, which resulted in a too-late biopsy, etc. Sure wish I'd made that phone call and 3-hour drive long before I did.
I am using ultalab which is 10 min from my house and seems identical to walk-in-lab, so i am all set. I was giving the pister who I assume lives in MD an alternative.
A usual, I'd say TA gave you the best advice..... a better scan for bone metastasis, and the likelihood that the cancer is imply too small to be picked up by any scan yet. Luckily you are fairly close to Hopkins expertise....if so insured or within your budget, take advantage ASAP. Someone here might even suggest a specific Doc at Hopkins!! If appointment at Hopkins in the very near future, maybe wait for that consult before deciding on any scan or the ADT?
Regretfully, unlikely a miracle. Hopkins might even advise prostate bed and whole pelvic radiation for another shot at a cure?
I had one of the best surgeons in the world do the original operation at Hopkins. It was dicey because the prostate was huge...100 cc. Organ-confined. Margins negative. Full recovery with no after-effects. And now 5-plus years later, here I am back in the soup anyway.
But yeah, I think Hopkins is the ticket. I'm not far away and have good insurance. As things stand, the doc in town here wants to dose me on Eligard, but I'm looking at this test read-out and asking: why? I don't know, maybe I'm still in denial.
Are you aware of Dr. Samuel Denmeade at Hopkins, and his bipolar androgen therapy (BAT)? If not, you should at least familiarize yourself with it. Google "BAT patient guide" and his name.
yes. PSA says there is cancer somewhere. If you can’t find it take the shot. Early treatment is more effective. You have years of high quality life left. Main recomendation is exercise and weight lift. Start weight lifting today.
I also had recurrence after a Hopkins RP and my local Pa urol ordered PSMA which showed some spots- I called Hopkins and was referred to a Hopkins rad onc and he ordered MRI- be sure you get the higher def Tesla5 machine - provides more insight to the PSMA result. Rad onc referred me to a med onc (Hopkins) since multi spots and now on bicalutimide and lupron shot headed to abiraterone w prednisone add on for systemic treatment.
I recognize the shock you experienced with the rising PSA and that was compounded by the scan results. The following is the experience of two friends who had a reoccurrence after surgery. The first was a rising PSA after 20 years. The second was very recent after after robotic surgery at Mayo Phoenix. Both are now undergoing radiation.
Yes, overall, I've read that recurrence happens for approx 30% of total treated patients....lower for low risk and 50% or more for high risk patients...especially Gleason 9 and 10!!
I too had a high PSA (5) a couple years after prostatectomy/radiation but no lesions detected with multiple PSMA and choline scans. Multiple docs (Fong at UCSF, Kwon from Mayo, Scholz from LA, Antonarakis from UM) all believe cancer is there, simply spread around in quantities too small to detect. I decided after very rapid rising PSA (doubling time of 3 weeks) that it wasn’t good to let my PSA go higher and started ADT (in ‘18). Added abiraterone in ‘21.
One doc wanted to shoot the moon and keep letting my PCa go until the cancer could be found. The other 3 felt that was a risky bet that contradicted what we know about the value of starting ADT earlier.
My QOL has been fine on ADT. I am weaker and the lack of sex drive is a bummer but I’m happy being alive longer
I have had the PYLARIFY® (piflufolastat F 18) twice at a very low PSA level. Both scans were positive. I had the lesions radiated with SBRT on both occasions with good results.
Thanks so much to everyone for their thoughts. These boards are so valuable and informative. Before my surgery I got invaluable advice on a forum like this from guys with experience and knowledge. They steered me in the direction of a pre-biopsy MRI, and that ended up making a huge difference.
Anyway, thanks to Terminal's information, I made an appointment at a nearby Quest lab for a follow-up PSA test on Tuesday. It's sort of a Hail Mary PSA to confirm the number from the one I had done two weeks ago.
Also on Tuesday, I'll call Hopkins about a consult. They were on the verge of making an appointment for me last week but when they heard about my PET scan, they suggested holding off until the results came in. I think now it will end up being the radiological oncologist as the first stop there.
No disrespect at all to my urologist in town here, but coming off the negative PSMA test, I think I'd like a second opinion before jumping immediately into ADT. Reading some of these on-line Eligard reviews inclines me to pause. In fact, I wonder if Casodex might be a better first line of treatment. In any case, I'd like Hopkins's view of the issue.
Might want to consider Dr. Michael Carducci at Hopkins. I like him. I see him in person quarterly. I also occasionally send him follow up questions using the Hopkins My Chart, and he has been very responsive. From my experience Mike helps you with options, and then lets you decide when to take action. He is based in Baltimore at the mothership, but if it is more convenient, he does see patients at Sibley in D.C., I think one day every other week.
Glad you got your PSA rechecked recently ... all the best!
Follow-up PSA came back showing no change from the first, which seems a bit surprising. You'd think that over the course of two weeks since the initial test, there would be at least a small rise in the value, especially if the cancer is metastatic.
I've scheduled an appointment with one of the prostate docs at Hopkins to get his view of this and will also keep my appointment next week with my urologist in town here.
However, with the PSMA PET scan entirely negative and the PSA number stable at 6.9 (at least for the moment), I'm not inclined to immediately jump into ADT as per the local doc's suggestion. I'd like another opinion before crossing that bridge.
Yes, it is unexpected. Hypothesis checking - most favourable scenario:
Your "undetectable" PSA was 0.1. To reach 6.9, six plus (6+) sequential doubling cycles are required. Within the 3 years span, PSADT ~ half a year or 26 weeks. Two weeks of exponential PSA rise -> 6.9x2^(2/26) = 7.28. So, in theory, if this lab had a perfect test repeatability record something around 7.3 should had been reported. But, I don't expect such pristine performance from a single decimal place reported PSA test.
Thanks, yes, I was doing the same sort of calculation and came up with something in the same range, maybe a tad bit higher, than your predicted number of 7.3.
Then again, it's guesswork since I can't know when exactly my PSA rise started. I was undetectable for 25 months post-surgery and then took the ill-advised holiday described in my original post above. No matter how you cut it, however, it seems like the PSA elevation has been rapid enough over the unmonitored three years that there'd be a measurable 2-week difference at this point.
But now for the buzzkill: it was not the same lab and not even the same testing methodology. My recent 6.93 resulted from a Beckman-Coulter test in a local hospital lab while yesterday's test was done at Quest using Siemens and came back 5.43. But even allowing for the 20% differential between the two methods, it seems that at worst, the two results amount to the same value.
I now have three consultative appointments scheduled over the course of the next month. I'd like to work in another PSA at the end of that period. The fact remains that the PSMA PET came up empty...and now the PSA appears roughly stable...at least for the moment. I'm not inclined to throw the switch on aggressive treatment until I have more data that might clarify the situation.
Two different labs is a sound practice for checking for gross errors. Not any good though for rate of rise calculations. 6.93/5.43=1.27, too much deviation for any meaningful deduction. I would have re-tested in a couple of weeks with either lab.
It gets weirder and weirder...in a good way...so far: just retested at the same Quest lab used five weeks ago and the PSA shows an 18% DECREASE...from 5.45 in early September to 4.58 yesterday.
Meanwhile, I have an appointment at Hopkins on Friday. It's with a radiation oncologist. I wanted a medical oncologist but was told that their protocol for rising PSA after prostatectomy with a negative PSMA/PET calls for the first stop being an RO.
It will be interesting to hear their take. At this point, however, I can't see myself rushing into treatment...certainly not blind radiation of the prostate bed with a PSA value this high, even if it is mysteriously falling. I'm thinking another PSA in November and then go from there.
If you want to make some sense out of it repeat the test with the other lab, i.e. the one that reported 6.93 previously. Test consistency requests a similar decline from that lab to be registred as well. If not, you will need a third lab to resolve the ambiguity.
Even though my post-prostatectomy tumors have never appeared on any scan, I've had Taxotere and prophylactic radiation of lymph nodes outside the local area. Details of my history are in my profile.
UPDATE: Over the course of three months and five blood draws, my PSA number has continued to trend downward...last measured at 4.4.
An MRI of the prostate bed was totally negative for indications of cancer.
I shifted care to Johns Hopkins where an RO recommended radiation, which I'm hesitant to do in the circumstances. However, an MO there was amenable to holding off active treatment, instead nominating me for a clinical trial at the National Cancer Institute where I will undergo a battery of tests, to include a comprehensive bone scan, in late November.
I'll also have the opportunity to consult an NCI doc who specializes in recurrent prostate cancer.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Advanced recurrent PCa, rising PSA, 2 negative PSMA PET Scans
Possible uptake after pet/scan but PSA is still 0.01?.
Axumin PET scan with undetectable PSA
18F-DCFPyL PSMA PET/CT Scan Result
Gleasson 6 and PSA 24, Prostatectomy?
