PSMA PET SCAN

[woolspnr51]

To those who have had the PSMA PET SCAN.... what were the results, was the scan helpful with showing any new metastasis?

[Timfc]

I had the Gallium PSMA PET scan at UCLA in May of 2018. It showed one bone lesion at t9. I had that radiated (SBRT) in one session at Mayo in Rochester. I was on ADT for two years, and have been off for 2 years. PSA has recently come back from undetectable and I am in the process of scheduling another PSMA PET scan. I had zero side effects from the 2018 PET scan. It will be very interesting to see if t9 has any uptake now.

[Nusch]

I had three PSMA PET by now. First one showed one PLN, RT in 8 fractions with CBCT VMAT. Second scan was negative (two years later), third and last scan by now showed oligometastatic (3 PLN, recurrence in prostate bed). RT with CBCT VMAT again (25 fractions). By the way: we did a CT scan together with the last PSMA PET. CT scan showed nothing. So PSMA PET was very, very valuable - zero side effects.

[Muffin2019 in reply to Nusch]

How did you get the insurance to pay for it ?

[Nusch in reply to Muffin2019]

In Austria insurance pays PSMA PET.

[Merlin1960 in reply to Nusch]

At what PSA are they re scanning you ? My husband has similar story to you t12 coughs on psma , radiotherapy was 2019 been off all meds over 2 years now but psa gone from 0.03 to 0.07 , need to wait until the end of june for the next psa before considering what action to take next , thanks

[Nusch in reply to Merlin1960]

I talk to my doctor and then we decide. When PSA is below 0.2 chances are low(er) to finding something.

[Starstation in reply to Merlin1960]

your best results will come when PSA is 2.0 or higher. I had Gallium 68 PSMA PET CT at UCSF Medical Center in Jan of 2020 (part of clinical trial) my PSA was 1.8

It was inconclusive--couldn't be certain that it showed lymph node involvement near ureter-- but by October my PSA was 3.7 and had another PSMA scan at Emory in another clinical trial and it was crystal clear--same lymph node had grown to where it was intertwined with and putting pressure on ureter where it was partially blocking.

Had surgery to fix.

With a PSA of 3.4 I went out to UCLA for PSMA scan in December of 2021 and lit it up with two 6mm growths in interior and exterior iliac lymph nodes. Because of past radiation and surgeries I am now on Orgovyx.

Moral of story...do not rush a PSMA scan too early could be very misleading.

[6357axbz]

I had the GA68 scan at UCLA prior to FAA approval. It confirmed Mets in my third and 6th ribs and my iliac bone that had previously been identified with bone and ct scans. It did find a new one in my para-aortic lymph node. Subsequently I had all Mets zapped.

[tango65]

Yes it was. I had 7 PSMA PET/CT, the first 2 showed PSMA avid mets.

I got treatment with Lu 177 PSMA in Munich in 2016. Next PSMA PET/CT 6 weeks after treatment was negative. Subsequent PET/CT studies were negative for PSMA mets (last one was done in February 2022, PSA was 1.4 and a diagnostic CT scan was also negative).

[timotur]

I'm in the UCLA PSMA-PET club-- in March 2019, my scan showed a mesorectal lymph node involvement, upstaging me to T3b-- and I did subsequent HDR-Brachy/IMRT/ADT.

[Merlin1960 in reply to timotur]

Thanks that was our thinking too but it’s good to hear it from someone who has been in the same position, best wishes

[LearnAll]

Ga68 PSMA PET/CT is the best scan. I had it 9 months ago. My PSA was 7.0 that time. This scan showed 1 very small met ( 2mm size) on pelvic bone. Because there was no pain, my onco did not recommend any radiation to this tiny solitary met.

[shotdoctor]

I have been recently (4 months) diagnosed with PC. My PSMA scan showed three lymph adenopathy's with one on the para-aortic artery along with cancer in the prostate. No bone involvement. Currently doing Lupron and Xtandi and my PSA is down from 31 to .4. How was it to have radiation on the para-aortic artery. Were there many risks? side effects? My oncologist has not recommended this Tx yet but I believe it will be in my future. Thank you for your time. For what it is worth I turn 63 in two weeks.

[Muffin2019]

My oncologist put in for a PET/CT scan but was denied by the insurance for these reasons, our records show you have cancer (treated since 2018), cannot be approved because one of the following must be met. The study will be used to guide your initial treatment plan. The study will be used at the end of your treatment to guide future treatment decisions and lastly you are receiving active treatment. I am on arbitrone, psa slowly rising, eligard shots and zgeva every 3 months. I did have a CT/bone scan on January 31st that showed no new Mets and no disease progression. I do not know why it was denied when the study will guide future treatments, will be used at the end to guide future treatments and I am receiving treatments. One of those is met since 2018, will be used to treat me in the future and will be used to treat me. I think I qualify under at least 2, so where to go from here with thr insurance. By the way it is AARP United Healthcare plan. Are they just trying to get out of paying for the scan and should I appeal ? I cannot afford to pay for it on my own, first time they have denied a test. They also have to get prior approval for the xgeva and elegard that never needed prior approval before this, maybe they figure death would be cheaper. He asked for it due to a history of cancer in the gland that surrounds the neck of the bladder, that is the prostate gland. Their physician reviewer looked at the records to see if it could be approved. Based on Medicare National Coverage Determination cannot be approved. Your records show that you have cancer, no shit Sherlock. I cannot believe the insurance company is doing this, they have been fine since 2018. So any suggestions where to go from here by anybody ? I know of a woman who lost her husband due to stopping scans in Virginia during the pandemic, I think she should have sued for millions. He is checking for PSMA in any of the cancer cells as far ad I know, so I guess that would take me out of the study.

[dhccpa in reply to Muffin2019]

You're not on Medicare?

[Muffin2019 in reply to dhccpa]

Yes on the advantage which is in my list I believe.

[dhccpa in reply to Muffin2019]

I'm on Medicare and had a PET CT, but I'm on a medical policy with United Health.

[Don_1213 in reply to Muffin2019]

Muffin - there was an article late last week in the NY Times about the government (HHS) investigating the managed-care (Medicare "Advantage") plans for denial and delay of tests and treatments that should have been covered. I believe the number was around 30% of the denials they made were bogus. That included United Healthcare. Advantage plans are all about insurance company profits - make no mistake - they're in business to make profits for their shareholders and executives, and if something like needed tests/treatments gets in the way of that goal - well - patient be damned. I do feel sorry for those people who can't afford traditional medicare and part-B, and a supplemental deductible coverage plan - you're pretty much screwed at the get-go.

I would appeal the decision from the insurance company, then contact your congress-critters and ask that they assist you with getting the government bureaucracy working on your behalf. It's funny how quickly these sort of decisions can be reversed if the government starts poking around at them.

[Muffin2019 in reply to Don_1213]

I signed the papers for the arrow study , took the EKG test, came out perfect, and 9 tubes of blood, PSA went from 5 to 6.8 so glad thd study I qualified for. I will get the PET scan since the insurance denied it and xtandi with no cost to me.

[FrankyB4]

I had the pylarify psma at .54 psa and it found a met at C6 that was treated with sbrt. Psa has reduced and pain gone. No adt. Previously had RP and SRT so I am recurrent.

[Kittenlover50]

We started our our journey before tge PSMA when only the c11 choline was avail at 2 facilities in the mid west,nMayo in Rochester and one in ? Indiana. There were a few others that were C11 but didn’t use choline,nthen the various Axium ones came into being. His PSA did not go below 3 after surg. Was found in pelvic lymph at surg.( MRI precsurg was neg) Got to Mayo. C11 found in lymph in chest. I’m addressing the question of insurance. They submitted, along with necessary info, for coverage to the insurance. Facilities with these scans know what to submit. In our case, it was pretty clear. Sometimes it takes an appeal to cover, even so far as a doc to doc. I coukd be wrong, but good with Medicare, private insurances can be awful. They deny for the stupidest things. He had like 4 over 2 years, monitoring progress of treatment and yearly for the past 6 years along with quarterly PSA.. Hoping for a PSMA for his yearly, this year. Again, not saying anything about the type of scan, but insurance procedure as someone asked.

[Ian996]

My bone scan was clear and the CT scan showed 1 lesion on my L1 vertebrae . The PSMA PET scan showed 3 lesions . L1 T9 and T10 . This is a very accurate scan with no side affects.I had the scan and the 3 lesions treated with SBRT at UCLA . Could not get treatment in Canada. BC Cancer are very frustrating to deal with. My PSA is low but rising ,I expect to have another PSMA pet in August when the PSA gets above 2.0, I have been on ADT for a year but it looks like I am developing resistance. I paid for the scan and SBRT out of pocket.

No help from government insurance. My treatment costs plus travel expenses were $65,000

[Green_Guy in reply to Ian996]

what sort of treatment options do you expect after your scan in August?

[Ian996 in reply to Green_Guy]

I expect to find more mets which if oligo metastatic (less than 5) I would receive SBRTto ablate the mets

[Green_Guy in reply to Ian996]

I see. Best wishes. I hope that you can enjoy life to the fullest while you are battling.

[bobdc6]

Where does one get these PSMA scans? Do they have them in Kansas City?

[September221 in reply to bobdc6]

KU Med Center got it in January 2022

[bobdc6 in reply to September221]

Thanks. Can you recommend an MO there as well?

[September221 in reply to bobdc6]

No, I'm so sorry, we don't have one there.

[bobdc6 in reply to September221]

Thanks anyway.

[Tony666]

I did a trial that required 3 psma pet scans. A word of caution. I got a false positive on my rib which caused me a lot of worry needlessly. Despite its name, other things besides prostate cancer exhibit psma. I don’t mean that you shouldn’t get it. In some cases it can be useful. Just know that not everything that lights up is prostate cancer.

[luis85715]

I HAD MY THIRD PSMA RADIATION AND MY PSA WENT DOWN 64% LOWERGOOD RESULT SO FAR

[Bangkok]

These will be the most clear and accurate method you will have. I have had two so far and in conjunction with my Lute-177 rounds I have eradicated a host of Mets that lite me up like a Christmas tree. I'm on HT, gaining weight but have maintained 0.01 PSA for a year. It's better than the alternative. I'm going back to Bangkok in July to do a 7 day cycle trip and have another scan to see if anything is brewing.

[Break60]

I had ga68 psma ct pet at UCSF in 2018 (when psa was around 2.0 )which found a met in scapula and one in rib. I hit both with high dose radiation (SBRT) then switched to estradiol patches from trelstar.

By March 2022 psa had slowly risen to .8 so I had dcfpyl psma ct pet at MUSC in Charleston SC which found scattered bone mets so I added Xtandi to estradiol patches.

Both times I paid nada. But in 2018 I had to pay air fare and hotel since I live in SC.I have original Medicare and Medigap.

[Rocketman1960]

Had PSMA scan with PSA @ 1.3 last week. showed 2 lymph nods light up. No other indications. Plan is to hit those two with SBRT. Wack a Mole here we come. I'm 12 years out from original diagnosis currently on Xtandi.

[Lee70]

Yes, very helpful.2014 CT & Bone Scan detected 5 lesions on spine and possible lymph node metastases.

2015 PSMA after treatment, only one small cancer activity detected on L5.

2017 PSMA avid lymph nodes in the upper pelvis and retroperitoneum, and avid sclerotic bone metastasis in Sternum.

Happy to report my husband Bob has been on Lucrin, Casodex, Avodart continuously since last scan and his PSA is undetectable.

Bob had triple bypass surgery in June 2021, and the Surgeon could not find the lesion in the Sternum, it had disappeared.

Recently Bob’s Oncologist has suggested another PSMA may be a good idea later this year, even though PSA undetectable.

[slpdvmmd]

Pylarify scan at PSA of 0.5 after being declared biochemical recurrence when bone scan and CT were negative. Three remote lymph node mets were defined in left neck subsequently treated with radioligand therapy in Heidelberg followed by RT. At this moment PSA is undetectable. Of course staying vigilant and continuing with lupron and abiraterone.