Some prostate cancer cells are invisi... - Advanced Prostate...

Advanced Prostate Cancer

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Some prostate cancer cells are invisible to PSMA GA-68 scan?

joeguy profile image
36 Replies

I am getting ready to have a GA-68 PSMA scan, but I have heard that not all prostate cancer will show up. Is this true, and if so, what is the reason?

Thanks to all the wise individuals on here for your input.

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joeguy profile image
joeguy
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36 Replies
tango65 profile image
tango65

There are cancer cells which do not express PSMA. A FDG PET/CT or a 11C Choline PET/CT could identify these PSMA negative cells.

GP24 profile image
GP24

Most patients have PSMA positive cells and a few PSMA negative cells. However, a few patients have more PSMA negative cells than positive ones.

As tango wrote, you can detect the negative cells with an FDG PET/CT or a 11C Choline PET/CT. However, these are not as sensitive as a PSMA PET/CT. For an FDG PET/CT you should have a PSA value of 10 ng/ml and for a Choline PET/CT a PSA value of 2 ng/ml or higher.

joeguy profile image
joeguy in reply toGP24

I had a PET scan back in 2017 shortly after my RP (I think it was the Choline variety), but nothing showed up even tho my PSA was still 11.00 after surgery. My PSMA scan is in about 4 weeks, and my PSA should be in the 2.00 or higher range by then. Its been very frustrating not knowing where it is located. I feel it has limited my treatment options.

joeguy profile image
joeguy in reply tojoeguy

Thinking back, they gave me the first Firmagon shot right around the time of the choline PET scan....... if they screwed up and gave it to me right before the scan, I bet it prevented anything from showing up

GP24 profile image
GP24 in reply tojoeguy

I read that a Choline PET-CT is not accurate while having ADT or Bicalutamide. Some clinics recommend to stop ADT about six weeks before the Choline PET-CT.

joeguy profile image
joeguy in reply toGP24

I think they gave my first Firagon shot just a couple days before the scan....I didnt know at the time they were screwing up

in reply tojoeguy

Your ADT injection would have zero effect on any scan. Once colonized, metastatic lesions will show depending on the class of scan. Even if your new scan fails to show, given your PSA and background, you will most likely have micro-metastasis taking place. Unseen mutant cells floating in your vascular and lymphatic systems. Discuss this term with you guy. Then talk about entering into a systemic treatment plan. Good luck.

GD

JPnSD profile image
JPnSD in reply tojoeguy

Won't Firmagon impact testosterone? Not PSA directly?

joeguy profile image
joeguy in reply toJPnSD

well yes and no...... it does block production of testosterone, but at least in my case, it dropped PSA almost immediately. After about 20 months it stopped working, and PSA went up again. That is when I got introduced to Xtandi....

GP24 profile image
GP24 in reply tojoeguy

The PSMA PET/CT will show the tumor lesions well at a PSA value of 2 ng/ml. If you do not like what you see, you can zap them with SBRT radiation.

joeguy profile image
joeguy in reply toGP24

My hope is that it will show its still contained to the pelvic are, and we can zap it all...... if it is indeed spread to lymph nodes in various parts of my body, as at least one of my doctors believs, I dont think radiation would be a good option. This is what I hope to learn from the PSMA scan.....still in pelvic area, or not

GP24 profile image
GP24 in reply tojoeguy

You have a rapid doubling time and a grade 5 cancer. I expect the scan will detect metastases. With SBRT you can radiate a very small area, e.g. a single met.

joeguy profile image
joeguy in reply toGP24

I have heard of guys on here getting relief from individual bone mets that way, but I have also heard some refer to going after individual mets as "whack a mole", implying its not all that sucessful. But I will be open to anything. All I know is that ADT was reeking havoc on my heart, so Im hoping for some good radiation options.

Tall_Allen profile image
Tall_Allen

Prostate Specific Membrane Antigen (PSMA) is expressed by 90-95% of prostate cancer metastases, but some do not:

prostatecancer.news/2019/12...

joeguy profile image
joeguy in reply toTall_Allen

Thanks for the info....... hoping to be in the 90%

Where are you having your scan? Assume it's part of a clinical trial.

joeguy profile image
joeguy in reply toHopingForTheBest1

Yes, it’s a trial at University of Iowa.... $2100

I don't know the answer to your question, but could you tell me/us where you will be having the scan? We live in Rochester, NY and are interested in also having a PSMA scan. Thank you. (If anyone reading this knows of institutions/locations for this type of scan, please reply.)

6357axbz profile image
6357axbz in reply to

The U of Iowa trial eligibility criteria is pretty restrictive:

Biopsy-proven prostate adenocarcinoma

Intermediate to high-risk disease, defined as one of the following factors: PSA > 10, T2b or greater, or a Gleason score of 7 or greater

A PSA level result within the last 2 months

Planned prostatectomy with lymph node dissection

Karnofsky performance status (KPS) >= 50 (Eastern Cooperative Oncology Group [ECOG]/World Health Organization [WHO] 0, 1, or 2) within the last 3 months

Must be treatment naive (not have received neoadjuvant chemotherapy, radiation therapy, hormonal therapy, androgen deprivation therapy, or focal ablation techniques (e.g., high intensity focused ultrasound [HiFu])

cancer.gov/about-cancer/tre...

joeguy profile image
joeguy in reply to6357axbz

I think they have loosened the requirements becuase of pending FDA approval of the GA-68 radiotracer...... The trial I am part of require recurrance after RP or radiation therapy....contact Shannon Lahman at 319 356 2259..... tell her you were refered by Mr. Fite who is coming to have a scan in December. Maybe I will get free parking or something....lol

6357axbz profile image
6357axbz in reply tojoeguy

Good info... Thanks

in reply to6357axbz

Thank you for your answer.

MateoBeach profile image
MateoBeach in reply to

If you are a veteran you can get the most excellent PSMA PET scan (DCFPyL) at the Los Angeles Veterans Health Center for FREE. Happy Veterans Day. Semper Fi.

in reply toMateoBeach

Thank you for your answer.

mrssnappy profile image
mrssnappy in reply to

My husband had PSMA Scan at UCLA on Oct.27th. All they require to schedule is the referring physician complete and send a PETCT Order form, PSMA Pre-Info Sheet, Pre-scan questionnaire, most recent progress note pertaining to the patient’s prostate cancer, prostate pathology report (biopsy and/or prostatectomy), and the last 2 PSA lab reports. They charge $2,977.10 and wait time to schedule is 2 to 3 weeks.

in reply tomrssnappy

Thank you for your answer.

joeguy profile image
joeguy

Its a trial at the University of Iowa.... the cost is $2100

Fanger1 profile image
Fanger1

As a diagnostic aid to your imaging and PSA measurements, you may consider asking your MO about ordering a wet biopsy that can measure circulating tumor cells (CTCs). Good luck with your upcoming Ga-PSMA PetCT.

joeguy profile image
joeguy in reply toFanger1

Good idea...thanks

Patrick-Turner profile image
Patrick-Turner

Some Pca in some men does not make PsMa expression at the tumor sites so FDG PET is needed.

If you are hoping to get Lu177 therapy, the Lu177 will only work on Pca identified in PsMa Ga68 scans. It will not wok on Pca which does not make PsMa so something else must be used such as RT or IT or chemo. There are men who have Pca with no PsMa expression and nothing works at all for them.

I have had 6 doses of Lu177 and all my Pca has expressed PsMa. I had FDG scan last July to search for Pca without PsMa but the scan was negative, and docs said all my Pca should be killed by Lu177. But after 2 years and 6 doses of Lu177, I am continuing to have Lu177 and I still have not completed killing all my Pca which docs say is now only in my bones, and may never kill all of it, and I cannot have endless Lu177 doses or I risk getting leukemia.

Patrick Turner.

treedown profile image
treedown in reply toPatrick-Turner

What do your WBC #s look like so far?

Patrick-Turner profile image
Patrick-Turner in reply totreedown

I talked with my doctor supervising my last 5th and 6th Lu177doses on 24 July and 2 October this year. All my blood tests look good ALP down, WBC count up, and Psa is down, but since July the rate of Psa reduction is flat lining at about 7.

The 9th PsMa scan last fortnight showed one cervical spine met with increased PsMa avidity, and about 5 more small mets just big enough to appear in PsMa scan, and some old mets which had healed up. So the new Mets are beginning to make more Psa as time goes by and old mets may be reducing Psa production thus the increase and decrease gives a stable Psa, but not for long and its expected Psa will soon increase again.

After an hour of discussion, my doc is a little uncertain and will be reviewing my case with her two chief doctors who have had many years more experience with nuclear medicine on about 19 November, and then she will email me with options about future path based on the large number of Pca cases that Theranostics Australia has so far treated. There is no need to rush into making up a plan now, but I expect a plan to allow another Lu177 dose in Dec or in January 2021, and perhaps some small % of Ac225 may be added, because that's good practice that is done in Germany where theranostic treatment with nuclides with ligand chemical added was invented.

My doc today does not think I have countless mets and the Lu177 is assumed to treat all mets where they make PsMa, even when so small they don't appear in scans. It is unknown how many bone mets I have, but its obvious I have many, and all are dangerous because from little things, big things grow. I can can only have so many doses of Lu177 and if I have too many it can damage bone marrow, liver or kidneys.

I am still taking Xtandi since April 2019, and it stopped working a long time ago. But for awhile it seemed to work because I saw Psa reduce from 25 in Nov 2018 to 0.32 in Nov 2019, a year after beginning Lu177 in Nov 2018. Xtandi worked as designed, as docs predicted, but the drop in Psa to 0.32 a year later was mainly just slowing down growth of Pca, and Xtandi was not responsible for much Pca cell death. I took Xtandi to make PsMa expression increase to make Lu177 more effective at each dose, But I didn't start Xtandi until after 3rd Lu177 dose in April 2019.

So doubt Xtandi has done much if anything for me, and doc has no clue about this, although maybe having Veyonda for 5th and 6th Lu177 doses has helped make more PsMa expression. So the conclusion today seemed to indicate mild betterment of my Pca status which is now on the verge of deteriorating with increasing Psa as time goes on unless another Lu177 dose is given. It took 3 doses after beginning Lu177 to get significant reduction of Psa, and after 4 doses and a follow up scan in August 2019, things looked quite good, with all Pca in scans all in my bones only, and this has not changed, and latest PsMa scan late last October shows less overall size of bone mets seen in July PsMa scan 2020. There no mets seen anywhere other than bones which could give a pile of trouble, such as in brain or skull or organs. There are no "non-conformal" mets seen in CT part of last scan that don't coincide with mets seen in PET part of scan, so it seems all my bone mets should respond to theranostic treatment.

But just how many very small active bone mets I have is a mystery because they need to be larger, and one doc in 2016 said PsMa scan needs mets to be 2mm dia before showing in PsMa scans, but my doctor now says met size has to be 5cm dia before appearing in a scan, so I think the doc in 2016 was fibbing to keep me calmed down. He sure was a good fibber, because he said the 31 Grey salvation IMRT that he gave in 2016 to PG would definitely kill all remaining in PG. But Pca in PG remained active until I had few doses of Lu177. Some docs do spout bullshit. The 2016 doc warned me not to read up about Pca treatment online because it would make me anxious and confused, and my email response to that comment in his email was that talking to doctors is what causes just the same anxiety and confusion. He thought I was a real smart arse, and that I ought not to ask questions because obviously I was not medically trained, so all my questions were stupid. There were several other questions that doc could not answer, but I eventually gave him my uninformed consent to proceed with the proposed IMRT, and later it was found to have very little effect on my Pca progress. Sometimes a man has to gamble with treatments, and to refuse something offered might make things worse, or not much better, all at high expense.

My Pcs no easy push over. I have known some to have very little treatment and none post here because they got easy remission from an RP, or a little ADT did seem to kill Pca cells. EBRT seemed to work OK. None of that for me. But I have seen far worse Pca cases than my own, with almost nothing working that docs tried, and death in less than 3 years after diagnosis that was not too late, because of the yearly Psa tests they had for previous 10 years.

IMHO, all men should have RP before Psa < 3.0, even without any other evidence any Pca is present. For a man of 60 is not ever going to get Pca, expect Psa = 1.0.

Well, a Psa = 3.0 is 3 times normal afaiac. I would have not had do much trouble for so many years with Pca if I had a biopsy in 2004, maybe 2005. Many men in now defunct old Pca websites had annual biopsies well before Psa > 3.0 and sure enough Pca appeared with low Psa and they had a low Gleason score and had open RP which ended all their troubles. None of these "escapees" write anything at this forum.

I'm not cycling this week. I'm cutting hedges and mowing lawns and doing other yard works to prevent weed invasion in this very wet spring we are having.

I found I could only last 1 hour using a small petrol Husqvarna powered hedge trimmer or my left arm went numb and tingly and hands got sore.

But I just tried a US Milwaukee battery powered hedge trimmer that worked a lot better, and it seems better made, less vibration, and easy to start, and no two stroke fumes and a lot quieter, so it looks like I'll buy one. The bar is 60cms, so it reaches further than 45cm, and bar construction seems a lot better than Husqvarna, and I did not once have the problem of the trimmer having branches jamming up in cutter blades. The ppl giving Husqvarna service seem like idiots, or not available, so I just have to spend more.

Below, Joeguy asks where I got Lu177.

Its being given in 3 clinics I know of in Australia run by Theranostics Australia and administered by GenesisCare.

I live in Canberra, a small city of 440,000 that is 300km south west of Sydney in Australia. Dr Lenzo, who I first spoke to about Lu177 said he had a 90 yo Canberra patient with Pca who drove himself up to Sydney before treatment beginning at 9:30 am, then drove home when radioactivity went low enough by about 3pm, so the man had left home at about 5:30am and got home at about 7:30pm.

But I have met 4 patients who flown in from USA and one from NZ. I humbly suggest our docs know was much as can be expected and are as good as any in the world.

Each dose of Lu177 costs about usd $7,000. You would need to get PsMa Ga68 scans where you live, maybe get FDG scans which are both about usd $500 because our Medicare does not cover the full cost of these scans. If you are insured in USA, I don't have any idea if the insurance company will pay for Lu177 in a foreign country. Because Lu177 is not yet fully approved, afaik, insurance here is useless, and Medicare won't help so 6 doses of Lu177 since November 2018 has cost me usd $42,000.

I am basically symptom free due to Lu177.

I hope to have a nice spring leading up to Christmas, but I expect a few if not many 40C+ days when summer gets going.

Patrick Turner.

treedown profile image
treedown in reply toPatrick-Turner

Thanks Patrick glad your doing mostly well. I don't get blood tests until late Dec when I get my next Lupron Inj. I let the Dr convince me to do everything every 3 months so will deal with what I find then. I have Dewalt Battery powered hedge trimmer which I think is a fine machine. Any job is made easier with the right tool I always say to my wife when she asks why I need a new one.

joeguy profile image
joeguy in reply toPatrick-Turner

Where have you been getting your Lu177 treatments? Seems like Germany is a popular location for many .

Patrick-Turner profile image
Patrick-Turner in reply tojoeguy

Well I hope all goes well doing everything every 3 months.

I used the Milwaukee hedge trimmer for an hour and a half today and both the trimmer and myself performed OK and I didn't get a numb arm, no fumy 2 stroke fumes, and there was no jamming on small dry branches, and I've had 2.5 hours from battery so far, which may / may not have been fully charged when my neighbor lent me the trimmer.

Noise is way down, and there's no fooling around with mixing up two stroke fuel, and no bother with starting the two stroke motor. I also have a very handy chain saw chainsaw but its a real pest to get it started even when its warmed after running a bit. It seems to have high compression ratio, so pulling the start cord is getting more difficult at 73yo.

So the Milwaukee e-trimmer is a better tool than the Husqvarna petrol job.

And of course who can argue with a man that wants a better tool to do a better job?

Now I have had Kylie Minogue and Nicole Kidman visit me recently, because they get on well with each other, because both are famous, and they don't mind a humble bloke such as me, and like to hang out here to escape the press who follow them around relentlessly. Good old Pat's joint suits them fine to catch up on reading, and escape the scene of fake ppl in Hollie Would. These to really love doing hedge trimming, and were very happy when I bought a petrol powered unit some years ago. But now I got and e-trimmer, they were extatically happy about that. But then there was a little trouble last week because they argued about whose turn it was up the step ladder to trim high parts of hedge, and I had to intervene, and made a rule that they should take turns, and then they got working. But Kylie is a bit of a show off, and she put on a pair of hi-viz scarlet hot pants. Well, being up a ladder with a hedge trimmer was extremely interesting to the young tradie guys driving past in their $50,000 work trucks with the right kind of tool, and so there was a crash because they got so distracted, so I had to intervene again and gently remind Kylie to wear beige shorts, and a wide brim Aussie hat, and sunglasses, and put on one of my old shirts. No more crashes. "See", I said, "the unwanted attention of a man with truck full of the right tools maybe wood knot suit you right now", and she agreed, and how pleasant that was, that a dame was so agreeable.

We got a lot of hedge trimming done today, Saturday, so we'll have a day off to rest, but will just sneak off to do a nice Sunday ride of 70km which these gals know is excellent to maintain their good figures. Its quite easy for them to remain unrecognized here in Australia aka Astraya, where so many ppl have gorn astray in one way or another.

I don't have a wife who asks me why I need a new tool. If I did, It might be awkward for me to explain medical reasons why a new tool wood be handy, but very hard to presently obtain anywhere. I'd probably ask why she needed a new hand bag, to change the subject.

So, life goes on, and doc I talked to yesterday was not fully sure about giving me more Lu177 until she consulted the two senior docs next week. Its good medical practice that more than one highly trained doctor in nuclear medicine will take a good look at my present Pca status and try to come up with the best plan for me. I may have more Lu177, but I don't yet because docs are not sure yet it would be best. Once they are sure about best thing next, they will explain why. I'll probably agree, and I really don't have to trawl around the Internet to look for some other Gee-Wiz treatment which may not work. Provenge comes to mind, but its costs a lot, and I don't hear much about success rates in extending lifetime, but about 3 years a man emailed me to say he had 9 years remission with Provenge, probably because his white cells which had been altered to fight his Pca then lived to breed new white cells with same Pca fighting ability. If the altered white cells cannot pass on their ability to fight Pca, the Provenge treatment may not give a long lasting result. It looks like I won't be able to have PARP therapy because I don't have any known genes which are thought to make it likely that Olaparib etc might work.

It is just a perfect spring day here, brilliant blue sky, warm but not hot, all seems well.

I'm soon heading out for lunch at a cafe, then into shed this arvo to continue slow work of building a few very nice vacuum tube amplifiers.

Patrick Turner.

Those pesky bastards! I’ve heard there can be 2-3 million pc cells hiding from scans at any time . It is Not a very pleasant thought ... we cant worry about that . Good luck

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