PSMA PET Scan Frequency?

[EatLovePray]

Hello forum members. This is my first post but have learned so much here, thanks to the contributors on this site. My husband’s last and only PSMA PET scan was 1.5 years ago showing 6 mets in small bones after PSA consistently rose a year after radiation. The standard ADT treatment was prescribed and it’s working. (His PSA is .04 now, thank God). We’d like to know if his mets are increasing or growing but the oncologist isn’t concerned as long as his PSA keeps going down . Is this normal treatment not to monitor mets if ADT is working?

[6357axbz]

Yes. Unless PSA rises to between 0.5 and 1.0 the psma scan is not very effective.

[Tall_Allen]

Yes, the oncologist is right. PSMA-avidity is very PSA dependent. PSA is the only way to know if the therapy is working for now.

[dhccpa in reply to Tall_Allen]

How would a person know if the cancer was spreading despite low PSA? Or are you saying it's too early to worry about that, since only 1.5 years?

[Tall_Allen in reply to dhccpa]

One can imagine all sorts of unlikely scenarios.

[dhccpa in reply to Tall_Allen]

I didn't know how often that situation arises. I've just seen the phenomenon mentioned here with some frequency.

[Nusch]

My doctor schedules a Pet Scan once a year, independent of PSA. As Pet Scans also include a CT, he wants to compare the results annually.

[Startech]

It's been 18 months since my last scan. I had a few bony Mets. My PSA has increased from undetectable to 0.11 and my testosterone has risen to 19. I'm a surgery guy that is only on Orgovix. I'm wondering the same thing, is it time to get another scan?

[NanoMRI]

I find as a patient we often have to be strong self-advocates to get out ahead of general population stats and guidelines. I have a friend at the Mayo Clinic this week, getting next round of scans, looking at changes from original baseline and subsequent imaging. There is not a lot of experience yet in US with PSMA and many disparities in opinions. I myself seek imaging well ahead of US guidelines and I am glad I do. All the best!

[treedown]

I had one PSMA scan after recurrence and no mention of another since. I got bone and CT scans a month ago and they are saying both again in 3 months. PSA is <.04. I think the repeat is due the CT finding something on T6 but the bone scan not showing it. My PSMA showed mets on C1,C2 ,T5 and T6 but after a year of ADT they are just concerned about something showing on conventional imaging before changing my treatment it appears.

[Fortran1958]

I have had PSMA PET scans when my PSA was 0.2, then 0.22 and 0.33. Nothing definitive detected. Initially urologist said wait until I hit 0.5 but revised that up to 0.6 before next scan.

[Stephen399b]

I hate to question Tall Allen's comments as he is always so accurate and helpful. However I have never had a high PSA score (never more that 10) and yet when I was diagnosed in Jan 2021 with PC and Gleason of 4+3, we then found I had metastases in skull, ribs, pubic bone, 6 in total.

I had 3 PSMA scans in 2022 which showed continuing growth, but could not get my oncologist/NHS to do another one as they said my PSA is >0.001. We self funded a scan at the end of 2023 and sure enough all the metastases are still growing.

I understand that about 5% of PC patients have conditions that are not indicative of their PSA results and my condition is certainly worsening significantly. I would always say have a scan if you can as PSA is not always an accurate indicator.

[j-o-h-n in reply to Stephen399b]

Stephen you've been with HU for 8 years, since you were 65 years old. Hopefully you will be with us for at least 8 more. When I see your UserID "Stephen" I remember my dear older brother Stephen who passed in 1981.. Thank you for that and remember "you are the crown"... God Bless.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Stephen399b in reply to j-o-h-n]

Thanks for your kind thoughts and pleased that the name brought happy memories.

P.S I note from your later message that you like eating sand? or you can't spell 'dessert' or I'm a pedantic sod!! Happy days.

[j-o-h-n in reply to Stephen399b]

I'm a bit of a peddammit sod myself..Always going around Dotting T's and Crossing I's

Thanks for the catch.... I actually do enjoy eating SANDwiches.....

Good Luck, Good Health and Good Humor.

j-o-h-n

[Retireddoc]

I am not a Medical Oncologist, but it sounds very reasonable to just continue to follow his PSA and not Image unless it rises to a certain level (different for each MO).

[Nittany]

I'm enrolled in a study of recurrent prostate cancer (PSA currently 5.4 after prostatectomy in 2018) at the National Cancer Institute in Washington. Their protocol calls for a PSMA once a year...unless or until there is a positive finding...at which point the timeframe changes to every six months. My PSMA in December was negative except for a "mild" radiotracer hit (SUV 4.7) at what was assessed to be a "nodularity" in the vicinity of the (removed) prostate.

My MO at Hopkins doesn't know whether that result will be definitive enough to trigger the shorter interval between scans. I'm supposed to meet with the NCI medical team in March, so I guess I'll find out at that time. Good luck to you. Eat...love...pray. Pretty good guideline for life management...with or without prostate cancer.

[EatLovePray in reply to Nittany]

Thanks for sharing your information Nittany.. Sounds like you’re getting good care. We’re in a small town so it helps to know what the larger and better known practices are doing.

[Skifanatic]

Here’s my data and you can draw your own conclusions. From 12/19 through 7/21, PSA was undetectable. Then,

10/21, PSA = 0.12

1/22, PSA = 0.12

5/22, PSA = 0.41

I had a pain in my hip, and in September 2022 my Ortho Doc ordered an MRI which showed a tumor in L3-L4. Then, I went to Moffitt Cancer Center (where I had been treated since DX in 2019) on 9/26/22 for a PSMA PET scan. Summary Findings: “Widespread metastatic disease as demonstrated by multi-station PSMA avid lymphadenopathy throughout the lower neck, thorax, abdomen, and pelvis as well as multiple PSMA avid osseous lesions and pulmonary nodules.”

On 9/27/22 my PSA registered 0.93.

[EatLovePray in reply to Skifanatic]

Thank you for sharing your data Skifinatic. It was helpful to me. Wishing you successful treatments at Moffit.

[Skifanatic]

I have since then transferred to Mayo in Rochester, under care of Dr. Eugene Kwon. I've done 6 treatments of Docetaxel and Carboplatin+, then 6 treatments of Pluvicto. My PSA has been undetectable since November 2021. Recent scans show 100% remission, Will follow up quarterly with rotating PSMA and Choline-11 scans. Fingers crossed for continued remission. Good luck to your husband, he's lucky to have you on his team!

[EatLovePray]

100% remission is fantastic! Congratulations! I’ve read studies about the success of Pluvicto but not the other drugs you mention. Will research. Thank you!

[j-o-h-n]

I love to eat and usually pray for desert.....chocolate chip ice cream (two scoops)...

Thanks to Stephen399b for pointing out that I made a mistake and used word "desert" instead of "dessert".

Good Luck, Good Health and Good Humor.

j-o-h-n

[Cooolone]

Well... With the Standard of Care, all I'll say is this:

The person who follows the crowd will usually go no further than the crowd.

The person who walks alone is likely to find himself in places no one has ever seen before.

Albert Einstein

It has some pretty deep meaning for us cancer patients! And usually reserved for those who enter the "advanced" world of it's staging!

Yes, studies show the way, as in PSMA scan use, as to the most effective way to use it that would benefit "most" patients, as a whole, a collective... But we aren't a collection of the whole, we are individuals! Our cancer is heterogeneous, ie, our own! No two are technically alike, similar yes, but still different!

I questioned and pushed even from the beginning, when my first PSA post RP showed it was unsuccessful. I asked about being conveniently boxed into these risk stratification groups, ie, Intermediate, Intermediate-High, Low-High, High (Risk). Because this was used to steer towards what treatment might be "best" for that diagnosis. Same applies to the use of testing for the purpose of diagnosis...

Anyways... Then and now, I'm always prepared to walk my own path. Was prepared to figure out how to pay for whatever testing I wanted done if insurance wouldn't cover it. Was always lucky though through persistence to obtain testing I requested and usually got covered by it being provided as part of studies or whatnot. But I became a special case through all that as well.

There are benefits and dangers with any testing as though the test itself is super sensitive, there are ways it can also not be so helpful. Low PSA producers, like me, also are low PSMA producers. So waiting until max efficacy, 0.8ng PSA (over other scans) isn't always an option. Additionally, the scan is only as good as the reviewer... Meaning there was persistent notes in my scans as to "inflammation" at certain locations with "low" avidity, lending to a "probably not" diagnosis, when they were in actuality a positive YES for PCa, only to be determined when physically removed (long story). So a later scan (PSMA) allowed for those "probably NOT spots which reappeared one year after a scan which showed NO Activity, to be suspect and then treated as well. For "me"... Understand again, my story is my own and does not apply to you. I'm just sharing...

The one question I would have with scans and frequency is how the overall collective of radiation may impact possible secondary issues later ... They do introduce a small amount of radiation to tissue, each scan...

So anyways, talk to your doc, and express your desires, insist on what it is you want from your care, be nice, but persistent. Be prepared sometimes to go off script, outside insurance coverage if it's something you want that's not on the normal path, or covered. It's all good!

[j-o-h-n]

We need to March to the much needed basic training cadence for U.S. politics.

You had a good home but you Left, you're Right. Sound Off!

Good Luck, Good Health and Good Humor.

j-o-h-n

[Hidden in reply to j-o-h-n]

FJB

[j-o-h-n in reply to Hidden]

et al.....

Good Luck, Good Health and Good Humor.

j-o-h-n

[Hidden in reply to j-o-h-n]

Yea j o h n.,..FruitJust Blended will really LIBerate you….

[j-o-h-n in reply to Hidden]

Thanks for the info, cause I really am into conserving my energy.

Good Luck, Good Health and Good Humor.

j-o-h-n

[Hidden in reply to j-o-h-n]

Conserving energy TRUMPs everything else ..,especially in 2024