How periodically do guys here get PSM... - Advanced Prostate...

Advanced Prostate Cancer

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How periodically do guys here get PSMA scans ?

Tinkudi profile image
26 Replies

How often and at what intervals should one get PSMA scans done.

Different doctors give differing advice. - One said once in 6 months , another said once in 3 months and one said oh we don’t do it again if numbers are good and no issues.

Dad got his first one done in May end.

Love to all 😊

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Tinkudi profile image
Tinkudi
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26 Replies
85745 profile image
85745

So far it's been one a year for the past two years

JohnInTheMiddle profile image
JohnInTheMiddle

I never had a PSMA scan and in my circumstances they aren't offered.

The message here is "no tests if there are no useful decisions that the tests would support". I'm on successful triplet therapy after a diagnosis of high volume stage 4 metastatic prostate cancer. Extensive lesions in metastases. Fortunately I responded well to triplet therapy. My scans are good now. At the beginning of course they were bad. What information would PSMA scans have provided that would have improved decision making? Maybe no information?

The back story is cost effectiveness. PSMA scans are much more expensive than alternatives. (Although apparently they are much more detailed or precise.) From the big picture perspective of healthcare funding, these cost benefit decisions and associated medical decisions make sense. In the American for-profit system if you have good health insurance then you'll probably get more diagnostics. But what works for funding agencies might not be to the advantage of the individual 🙁

Instead of PSMA scans, I have less expensive full CT scans and SPECT scans (radioactive dye). About every year. Not often enough really. And as for the CT part I'm getting concerned about the cumulative radiation.

Of course the PSMA surface protein on prostate cancer cells is only useful for imaging or therapeutic targeting, if one's prostate cancer has not evolved to a different kind of cancer such as neuroendocrine cancer, small cell cancer, or AR negative cancer etc.

I find that doctors and the Healthcare system are not very helpful in explaining all this.

Such as how do we find out earlier rather than later that one's cancer is evolving away from HSPC?

Or another question is "I wasn't expected to live so long and so high doses of radiation haven't really been a concern, but can we look at different imaging methods now to minimize additional radiation exposure?"

If anyone can provide insight on the advantages of different scans in the light of expense, radiation exposure, diagnostic utility etc, it would be great to know more. Especially as I keep moving forward with life.

dhccpa profile image
dhccpa in reply toJohnInTheMiddle

Yes, I've seen a few deer-in-the-headlights looks when questioning docs about scans. And differences between scans, or types of scans? Oh Boy!

Maxone73 profile image
Maxone73

Once every 6 months while I am in remission. It's still radiations, not something to take lightly. They could go to once every 3 months only if needed.

MoonRocket profile image
MoonRocket

Don't have a schedule but interestingly I am having my 2nd PSMA scan on Nov 15th. I discussed with my MO and he thought an updated scan was warranted. The driver for me was I am already at my Max out of pocket so the insurance is covering the entire tab.

mrscruffy profile image
mrscruffy

For me, every 6 months as needed

Nusch profile image
Nusch

I’m in complete remission with undetectable PSA and doing a PSMA Pet scan once a year.

garyjp9 profile image
garyjp9 in reply toNusch

I don't understand what your doc thought he would find by doing a PSMA scan when you have an undetectable PSA ? My understanding is that they won't show anything until your PSA starts to rise?

Nusch profile image
Nusch in reply togaryjp9

He says, the radiologists compare the scans from one to the next time and that tells them, if anything is changing.

Seasid profile image
Seasid in reply toNusch

Only if you experience pain, otherwise usually not worth getting a PSMA pet ct scan until your PSA rise above 0.2 or even better 2. I didn't have any scan for almost 4 years after my early chemotherapy when I had my nuclear medicine bone scan. I sometimes think that at some point (when the cancer morph into CRPC PSMA pet ct scan will not show anything.

I usually do PSMA pet ct scans when my MO wants to put me on a clinical trial and the inclusion criteria ask for a on the scans visible metastasis.

Brightman profile image
Brightman

I am having my first PSMA scan on Monday because my psa has risen to 1.68 rather than being <0.01 where it has been most of the time since Triple treatment started in 2016. Here in Australia my oncologist has told me I am only allowed to have 2 in my lifetime on Medicare and only when my psa has risen above 0.20. I am of course concerned where my cancer has spread to now and what treatments I will have as a result. I have had the usual CT and bone scans each year but the PSMA scan is in colour and shows up smaller cancer sites.

Seasid profile image
Seasid in reply toBrightman

I always paid for my scans about 700 Australian dollars.

Fortran1958 profile image
Fortran1958

I had 5 scans over a 12 month period. This included a trial of a new isotope and a baseline scan using the old isotope. I then waited 3 years before my next scan which did reveal the reason for my increasing PSA.

Hawk56 profile image
Hawk56

In part, the answer is a function of a variety of factors from my experience

Financial Toxicity

Medical Necessity

Medical Effectiveness

Your medical team

There is the financial toxicity aspect - insurance, will it cover the scan and deductible, co-pays.

Then there is the medical necessity. My oncologist is on the side that says if my PSA while on treatment is undetectable, no medical reason for imagining. He is not wrong, though there are those who disagree, Dr. Kwon is one. When I was treated by him, he had a C11 Choline scan done every four months and yes, my insurance (TRICARE) covered each one, well, one I had to appeal for some odd reason, I won. While on treatment from April 23 to April 24, he did (would) not do one other than the initial one to locate where the recurrence was.

Closely associated with medical necessity is what healthunlocked.com/user/Joh... lays out a third, medical effectiveness.

My current oncologist, radiologist and I do have criteria about when to image when I'm off treatment, three or more consecutive increases of PSA and between .5-1.0. Fortunately we have not had to decide about while on treatment to this point.

Kevin

Clinical History
vintage42 profile image
vintage42

Tinkudi said: "How often and at what intervals should one get PSMA scans done. Different doctors give differing advice..."

It is not up to my doctor. My insurance will only cover a PSMA scan based on rising PSA numbers. I cannot get PSMA scans on demand.

For instance, in Mar 2023 my PSA had jumped up (biochemical recurrence), justifying a PSMA scan, which showed pelvic node mets, which led to pelvic radiation. Then in Dec 2023 the PSA jumped up again, justifying a second PSMA scan, which showed abdominal node mets. So I started ADT. I sure wish I could take a look with a third PSMA scan now after a year, but I cannot because my PSA has been 0.01.

PSMA scans are relatively expensive because of the handling and accountability of the dangerous radioactive material which must also be kept cold. The hospital billed Medicare $44,000 for each scan, but the hospital's contract with Medicare required them to accept only $2,000. An uninsured patient would face the challenge of negotiating the higher amount.

dk73 profile image
dk73

my husband had his one & only in 2023 prior to Pluvicto. When Pluvicto failed, he had a PET scan plus bone biopsy. Since his PSA rose to 235 after Pluvicto, they wanted to see if he had a different type of cancer now but still PC in the bones. Quite a spread of Mets too: skull to femurs.

NanoMRI profile image
NanoMRI

How often depends on purpose/intent. If one is looking for best bang for buck - in other words - the more mets the better the financial return - then wait. Unfortunately, when imaging (finally) identifies some (not all) of the mets we have to face the reality the beast has been growing and spreading - 'undetected'. If one's intent is to get after cancer ASAP then obviously uPSA testing, imaging and liquid blood biopsy testing need to be done more frequently.

My most recent PSMA PET CT (which I was willing to self-pay (I have self-paid before)), did not identify any prostate cancer but indeed identified a unexpected/surprising/shocking metastatic melanoma met in my liver.

Based on pathology findings of my melanoma surgery done six years ago, "guidelines" and "SoC" do not suggest/support any need for imaging/liquid blood biopsy testing. So, had I not been looking for lingering prostate cancer at uPSA of 0.03X, yes 0.03X, then my metastatic melanoma cancer would have continued growing and spreading, undetected, until I experienced symptoms.

Since my successful salvage extended pelvic lymph node surgery with frozen section pathology method, done nearly seven years ago, I reject common thinking guidelines and have uPSA testing, imaging and liquid blood biopsy testing when I want, because I am unwilling to give the beast time and obscurity.

Tinkudi profile image
Tinkudi in reply toNanoMRI

uPSA is the regular psa testing that we do ? When should one get a liquid biopsy done ? No doctor has suggested that

NanoMRI profile image
NanoMRI in reply toTinkudi

your doc may have good/correct reason(s) to not mention it. Being that I am otherwise NED I use it as part of my 'trifecta' testing for earliest possible identification of remaining cancer being on the move; done with frequent uPSA testing and imaging. There is thinking liquid blood biopsy testing can indeed identify cancer ahead of imaging.

Another use is looking for genetic mutations - I will now be doing this for my recently Dx metastatic melanoma. This might be something to speak with doc about - if mutations a consideration.

JJFR60 profile image
JJFR60

Had one after 3 chemo sessions and getting one next month at the end of the chemo to see the effects of the chemo.

All covered by our mandatory national health insurance in the Netherlands. As is all PC treatment.

Mascouche profile image
Mascouche

Where I go, a PSMA Pet scan is only authorized if the PSA has risen in the last 3 tests and if both a bone scan and a CT scan reveal nothing. The only PSMA Pet scan I've received was in April 2020.

I was expecting to get a PSMA Pet scan last spring since my PSA had been rising and the CT scan showed nothing but then the bone scan revealed a met to my right shoulder blade so the plan to do a PSMA Pet scan was dropped.

Sunnysailor profile image
Sunnysailor

I’m wondering this too and plan to ask at the next appointment. Last appointment my husbands oncologist said his next scan will be a CT as he can look at them in much finer detail than a Pmsa pet Ct to see if any of his Mets are growing. Pmsa merges images and doesn’t allow for small details. This is at Mayo in Rochester.

tallpall profile image
tallpall

I'm on active surveillance. Every 3 months first year then 6 months.

Tinkudi profile image
Tinkudi in reply totallpall

First person I have come across who is getting it every 3 months. What was your diagnosis ?

tallpall profile image
tallpall in reply toTinkudi

Gleason 9. 2years abi + lupron +prednisone. SBRT 6 sessions. No mets

mababa profile image
mababa

Tinkudi, I was diagnosed Sept 2023, Gleason 4+3 unfavorable, PSA 8.5. First Pet-ct scan in Nov, Stage 4a. ADT started Feb 2024, after my denial stage. PSA max was 16.21. Was 0.87 in Aug, just before RT. Was 0.11 in Sep, after RT. My RO wants another Pet-CT scan in six months to check the status of my prostate and LN tumors. But no more scans unless my PSA starts to go up. My sense from her is no scans as long as numbers are nominal. Am currently on ADT + ARPI combo, Orgovyx/Abiraterone+Pred. Good luck and best wishes in your battle against this disease.

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