GP2412 months ago

If CT/bone scan show metatases, the question is what will change if you see more metastases with the PSMA PET/CT? You can just continue with systemic therapy. However, if you want to get a Pluvicto or Lu177 therapy you will need a PSMA PET/CT first.

bglendi53 in reply to GP2412 months ago

I'm just thinking it may be beneficial for potential targeted radiation, as well as confirm why the PSA is rising.

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GP24 in reply to bglendi5312 months ago

A PSMA PET/CT is an excellent diagnostic tool. If you want to have one, you can get it done. If it turns out that there are no more then three or four mets, you can find a doctor who will radiate these mets. If you have more, you could try to get a Pluvicto therapy.

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Justfor_12 months ago

The radio pharmaceuticals of the two nuclear imaging alternatives, CT contrast being the same, have a price ratio of 10:1.

Tall_Allen12 months ago

I agree with your doctor. He is using the bone scan/CT to monitor progression on your current therapy. If you switch to a different kind of scan now, you will not know if any increase in metastases is because the therapy is failing, or if it's only because the new scan is more sensitive.

bglendi53 in reply to Tall_Allen12 months ago

True, but why wouldn't you want to know where it all is?

Check out this video where Dr, Mark Scholtz thinks bone and CT Scan are probably history.

youtu.be/cOiAvhDYYvk(Not working as expected?)

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Tall_Allen in reply to bglendi5312 months ago

I don't watch such videos, sorry. Especially not ones in which doctors are talking to patients and not his peers.

But Dr.Scholz is wrong if he thinks bone scans/CTs are history. All of our current SOC is based on trials where metastases were detected by bone scan/CT. The findings are not valid for PET scans. It will be many years before those trials can be re-done with PET scans. And by then, there will be more sensitive detection methods, or imaging might be scrapped altogether in favor of molecular biology.

Answer this - why do you care where one large enough to detect on that PET scan is? (Keep in mind that diagnostic tests only have value if they can potentially change a treatment decision)

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bglendi53 in reply to Tall_Allen12 months ago

I care because my PSA is climbing rapidly and the current imaging is not finding anything new. The PSA has to be rising for a reason I would think. Since myb PSA got up to 165 before I moved on to oncology I want to stay on top of it before it gets out of hand.

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Tall_Allen in reply to bglendi5312 months ago

The only valid reason is to change your therapy. What will you do differently if it finds something? What will you do differently if it doesn't find anything? That's an expensive test to take if it has no other purpose than to satisfy your curiosity. Let's assume it finds more metastases - what then?

If the only possible change is to change from your current therapy, than you have to get the same test you've had all along. If you get a more sensitive test, you can't know if those metastases were there all along or if they are new.

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jac_j_sp12 months ago

Yes if you want a less accurate portrayal of your condition bone scan is the way to go.

My PSMA-Pet uncovered mets in lymph in neck and lower back. I certainly didnt want to know that.

So I will get another PSMA-Pet soon to see progression rate

skateguy12 months ago

I had a PSMA scan and as far as I understand it, the PSMA scan is specific to a protein within the prostate cancer cell. So it only lights up a percentage of all cancer. In my situation the pMSA scan came back negative for that protein yet my body is littered with cancer. The scan was conducted to determine if I was a candidate for the LU177 treatment, which I’m not.

CAMPSOUPS in reply to skateguy12 months ago

Thanks for sharing. That's an important point I hope caught attention here.This likely accounts for TA often reminding to get a FDG-Pet scan to compare to PSMA scan as its possible LU-177 wont be effective with some.

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20PeteG1612 months ago

Now into my 13th year, and after PSD increased from 1.2, 3.65 to 14.23 in two months, my oncologist ordered a PSMA from the Hollings Cancer Center at MUSC. My oncologist recommended I be interviewed for clinical trials in Charleston SC. Dr. Michael Lilly, chief investigator, recommended a trial; remaining on Zytiga/pragdasone with Opaganib. Tuesday I has bone scan with contrast, labs, Cat scan with contrast, psychological screen and EKG. Felt like a pin cushion!

Establishing a base line for qualifying candidates requires a data base. So far the preliminary results indicate a stable and low tumor load. I hope this is of some interest to the Boy-of the-bonny blue Ribbon; and those who care for us.

God bless,

PeteG

gourd_dancer12 months ago

I concur with your Doctor. I have had 25 nuclear bone scans paired with abominable CT scans starting in 2003; the last in 2016. Tried and true method to establish base lines, then mark progress. I admit the new scans were not available when I entered this arena, though in comparison, my treatment would not have changed with any other type of scan.

Best of luck in killing the little bastards.

Gourd Dancer

bglendi53 in reply to gourd_dancer12 months ago

Another thing I don't understand is that once I had the Lupron and Erleada, not only did the PSA drop like a bomb at first, but I had numerous met's on a scan in August of 2020, and subsequent scans showed improvement in most areas with terms like " near complete resolved uptake". I asked my Dr. if Erleada was a chemo drug and he said no, yet it gets delivered in a bag marked Chemotherapy. But maybe they were starved by lack of testoterone, which is now 19.

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SLIMPICKEN in reply to gourd_dancer11 months ago

Darned it GD! 25 nukes must be some kind of record amigo! Dam . I’ve had 7 yearly now . Woah! U da man!

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dhccpa12 months ago

In Fall 2018, just as I was beginning Lupron, I had a number of bone scans, CT scans, MRIs, and finally a full body PET Bone Scan. The PET showed up to 10 or so "things" that might be problematic. Over the next three years, I had more MRIs of pelvic/prostate area, and 3 Axumin PET scans. Now about 3 Mets are still showing (actually one of those disappeared on last MRI, and the MRI didn't cover the spine, where the other two are). So I suspect we'll stick with PETs and MRIs going forward.

A good question is: can a bone scan, CT, or MRI pick up anything that doesn't appear on a PET (leave aside PSMA PET for the moment)? I'm not sure I've seen a clear-cut answer to that one.

j-o-h-n12 months ago

Greetings bglendi,

Would you please be kind enough to tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

ALL INFO IS VOLUNTARY, but it helps us help you and helps us too.

When you respond, you might want to copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/07/2022 5:56 PM DST

bglendi53 in reply to j-o-h-n12 months ago

Hey j-o-h-n

I was diagnosed in Feb, 2020, had robot assisted radical protetechtomy on April 28, 2020. A week later I get a call that they did not get it all and they would follow in 12 weeks with a PSA test. Before surgery, the was no metastatis detected. Age then was 66, 68 now.

My cancer was Geason 9, grade 5. In early August of 2020 my first PSA came back at 52, a week later, 67, and two weeks after that 165. Immediately moved from Urology to Oncology.

Began hormone therapy of Lupron and Erleada ( apaludamide ). PSA dropped to .20 by March 2021. But has slowly been climbing with every test since, latest was 6 weeks ago at around 12.

Being treated at the Cleveland Clinic, not willing to name doctor at this time, not sure why that matters.

On March 1, I started a Xofigo treatment every 30 days for 6 months. Just had second injection this week. No PSA was checked.

Side note, my local Dr. Never checked my PSA for three years, but when I was diagnosed I only had 8.4, so not sure if it even mattered.

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Justfor_ in reply to bglendi5312 months ago

Do you know your PSA at the day before your RALP? Labs on admission is standard practice here in Europe. From the, post procedure, unbelievable PSA values that you quoted I am not any longer sure regarding the practices followed there. I can see 3 variants:

a) No labs before procedure.

b) Labs reporting a PSA value compatible with that of diagnosis 2-3 months before, i.e somewhere around 10.

c) Labs reporting a PSA value compatible with your post procedure ones, i.e. 20 or so.

In all 3 of the above I sense negligence or mal practice and fully understand your reasons for devulging not the name of your urologist.

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bglendi53 in reply to Justfor_12 months ago

I don't remember seeing a PSA during the time of the surgery.

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j-o-h-n in reply to bglendi5312 months ago

Thank you for your quick and detailed reply. Only reason for Doctor's name is in case someone else uses him/her and you wish to exchange war stories. You had a hell of two years and hopefully you're in the groove now. It's a good idea to copy and paste your details as your bio in your home page. It will come in handy for you and other members in the future. Stay well and keep posting.....(try to laugh every day)....

p.s. Pca is a sneaky son of a bitch......

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/07/2022 10:55 PM DST

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bglendi53 in reply to j-o-h-n12 months ago

Yea, I'd just as soon keep the Dr's name out of it for now. I'm going to a world class hospital and the Dr. has very good reviews. I may be over thinking it, but I come from and engineering background and "logic" was everything. So I put logic into all my questions.

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j-o-h-n in reply to bglendi5312 months ago

Seems logical.........

FYI Lawmakers banned the whole state of Idaho, claiming that if you laid it on its side it resembles a gun.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/08/2022 11:05 PM DST

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Boywonder56 in reply to j-o-h-n12 months ago

Now thats joke is a great one for us chemo fogged troubadors.....i read the joke...went back thru the post....wtf is j.o.h.n. talking about.....i got it......2 days later.....peace to ukraine f🇺🇦k putin.....bw

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j-o-h-n in reply to Boywonder5612 months ago

You did good..... most people are still scratching their heads....

Do you think Putin is a reincarnation of RasPutin?

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 04/09/2022 12:08 PM DST

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Spyder54 in reply to bglendi5312 months ago

Logic is good! Much of what we do is a combo of Science and Art. Logic does not always apply. We are just one huge science experiment as far as I can see. Mike

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Spyder54 in reply to bglendi5312 months ago

Hi Bglendi53,Enjoyed this back and fourth. We are all learning with the new Scans vs old CT/MRI/Bone. It seems, in summary if your base was with old scans, then today, only the old scans work to compare progress/regression. Still….if insurance will pay (approx $3,500.-Medicare will pay for 1 per year), for FDG Scan or PSMA Pet, in addition to old scans, you may learn more.

Also, simply copy/paste your response to John, above for your Bio page. This is where many go to learn your history before responding. Your Bio appears empty.

Best,

Mike

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bglendi53 in reply to Spyder5412 months ago

Thanks Mike, I'm still learning this site, so I'll get that done. I'm almost 69 but I'm still on my wife's insurance plan as she is still working for another year or so. I haven't signed up for Medicare Part B because her insurance has been really good so far, but I'm thinking I better do it by the first of next year because I might be better at covering certain procedures, then use her plan as my supplement. Still a lot to figure out.

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bglendi53 in reply to Spyder5412 months ago

Mike,

I copied the info I gave John into my profile, but I don't see it showing up there. I did have a few words in there before, not sure what I'm doing wrong.

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Boywonder5612 months ago

J.o.h.n. is not a dr. He just plays on on tv...in real life he's a collector of door knobs...he' s been featured on as the door knob turns....

j-o-h-n in reply to Boywonder5612 months ago

Funny......Keep that up and I'll get an angry knob to protest around your home...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/08/2022 10:36 PM DST

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SLIMPICKEN in reply to Boywonder5611 months ago

He is the king of hob knobbin! 😎❤️

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MateoBeach12 months ago

Sounds like your MO is stuck following some SOC “script “ and not incorporating the now established roles of PSMA PET scan to determine if Pluvicto might be beneficial or not. I would consider changing to a more progressive and well informed MO, one who keeps up with current literature and practice trends. Get the PSMA PET and also an FDG PET for concordance.

bglendi53 in reply to MateoBeach12 months ago

I'm sure there is some truth to that, but I quite sure that the Cleveland Clinic is a progressive thinking place when it comes to treatments. I'm working on getting the PSMA-PET once I find out what my insurance covers.

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Hidden12 months ago

My doctor explained that my insurance company required CT and bone scans before they would spring for the Axumin scan we both wanted. Just seemed like an added expense to me. Those coarse scans turned up nothing. Neither did the Axumin scan for my slowly rising PSA reading of 1.8 5 1/2 years after full gland HIFU.

bglendi5310 months ago

My doctor says it won't make a difference because we already know my cancer is metastatic. However, my PSA is constantly riding, even though the bone and CT scans look stable. That's where my concern is.

bglendi5310 months ago

Thanks you so much for the feedback. My MO seems to be reluctant, but from what you are saying we both share the same feeling about PSMA imaging vs traditional bone and CT scans. He is putting me through a bone and CT Scan on June 2nd, but after that I'm going to become more aggressive in my demand for PSMA.

Rev2142 months ago

I want one(PMSA PET) just to truly know where I am at on this journey none of us wish to be on. You can not fight what you can not see. I fight to win...can't plan if you haven't identified every available target! We fight, we fight...for victory and if not possible then for extra quality time before tshtf.

bglendi53 in reply to Rev2142 months ago

My MO just recently agreed with me to get a PSMA-Pet scan because my PSA is up over 300. But Insurance rejected it. The battle continues.

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