POST PROSTATECTOMY RECURRING PSA DIAGNOSED BY PSMA PET #1: ARE PSMA PETS #2+ THEN LIMITED OR DENIED TO CONFIRM CONTINUED PSA RECURRANCE?
Does anyone have experience receiving a total of 2 or more PSMA PETs to confirm PSA recurrance as evidence of the rate of prostate cancer metastisis prior to a second treatment decision to consent to additional treatment options, beyond prostatectomy, namely, hormonal treatment ( ADT) or chemotherapy?
I personally was just denied from receiving a PSMA PET #2 to measure prostate cancer recurrence by a hospital third-party agency that bills Medicare on behalf of the hospital.
I intend to formally appeal this third-party decision to deny billing Medicare for a PSMA PET #2.
Does anyone have a similar experience and then successfully appealed to obtain approval to receive not only a PSMA PET #2 but also additional PSMA PET #3 , PSMA PET #4, etc.?
Written by
Johnnyred
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Why do you need a 2nd PSMA scan? If you have persistent PSA after a prostatectomy then you need radiation to the prostate bed and lymph nodes (whole pelvis) and ADT + abiraterone.
I had a PSMA SCAN before prostatectomy to rule out metastasis. It's 8 months since surgery and have had PSA's every 3 months. The contrast material for PSMA scan costs 15000.00 dollars a pop. For sure Medicare or any Insurance company is going to deny payment given the profit driven nature of healthcare in the US.
That doesn't answer the question of why you want a 2nd PSMA scan. When you have persistent PSA after a prostatectomy the standard of care is pretty clearn ADT, Abiraterone, prednisone and radiation. There is no need for a 2nd PSMA scan.
If you have a anaplastic cancer that produces little PSA ( Gleason 5+4), couldn't it mutate to producing none so that a low OSA could give a false sense of security? Six months after my surgery, PSA was only 0.2 but had 4 hot spots on PSMA. I wonder if I should be re-scanned. It's been a year.
Johnnyred: I've had a biochemical recurrence starting in 2015 after my 2012 prostatectomy. My PSA continues to climb consistently, but very slowly. I was offered radiation of the prostate bed, as some here have suggested, but opted not to have widespread radiation "down there", as they termed it, because there was no certainty that that's where the recurrence is. I've read authoritative studies that say that a significant percentage of recurrences are first found in the lymph nodes. A small percentage are first identified in the bones and a few even in the brain. I had a F18 DCFPyL PET/CT about 3 years ago as part of a clinical trial. No lesions were found. Medicare and my secondary insurance paid for it without question. Even though a test or treatment may be part of a clinical trial, they still bill Medicare if it's a Medicare covered condition. About a year ago, I got a Ga68 PSMA PET/CT, shortly after it was FDA approved. No lesions were found. That one was not part of a clinical trial. Medicare and my secondary insurance paid for it without hesitation. A few months ago I was part of another clinical trial testing another new radiotracer that "lights up" prostate cancer tumors in cases of biochemical recurrence at low PSA (currently 1.9). In that trial I got the new CU64 SAR Bombesin radiotracer PET/CT (not yet FDA approved) and also another Ga68 PSMA PET/CT for comparison as part of the trial. Neither showed any lesions. My point is that it's not true that Medicare won't pay for "serial" PET/CTs if there is a medical reason for them -- diagnostic tools in my case. Others will be quick to tell you you should get radiation and maybe ADT and maybe other things as soon as you're diagnosed with a biochemical recurrence. I agree that there's a fair chance that will stop your cancer (IF that's where it is), and maybe even be a cure. But, you can also be almost sure you will have significant long-term side effects, which often increase over time. I have had 7 1/2 years of excellent quality of life, with no symptoms and no treatable lesions, even with the most modern diagnostic scans. I'm going to continue the "serial" scans every year or so, until they find something that can be treated, and have a full life in the mean time without radiation or drug side effects. If they do eventually find lesions that can't be treated directly with surgery or radiation, and I need to start ADT or other drugs (all of which typically only work for a limited period of time), I won't have "used up" those treatments before the lesions are detected. Good luck.
Thank you for your thoughtful answer.I had a PSMA PET #1 ordered by my urologist after my Prostatectomy, when my PSA at 30 days and 40 days post-surgery was 6.95 and then 7.7.
The purpose was for staging of metastasis. The PSMA PET confirmed PSA was located in "tiny spots": 1 on C1, 1 L5, 1 on sacrum; 1 on each of 3 right ribs, and 1 on each of 5+ lymphs. nodes.
Referred then to an oncologist, I was repeatedly informed that I could NOT receive any additional PSMA PETs to establish evidence of metastasis leading to the PSA doubling status. Why? The reasons given included: PSMA PET is used only to diagnose, not to monitor, not be used to establish recurrence. The only permissible tests fo monitor are full body CT and NM whole body bone imagery.
The problem: the diagnostic accuracy of the NM whole body bone imagery is extremely unreliable. All that glitters or glows is not evidence of areas of bone cancer, but can glow for areas of arthritis, old fractures, or missing teeth.
In my case for a January, 2023 NM bone imagery test, the radiologist was adamant that I had evidence of extensive bone cancer and ignored the fact I had multiple areas of joint arthritis and 2 missing or damaged teeth on both sides of my jawbone.
Monday of this week, I received a 2nd Opinion from a well-respected radiologist, who totally disagreed with the first radiologist's diagnostic report, stating there was no conclusive evidence that any of the "glows" was evidence of areas of bone cancer in this NM Whole Body Bone Imagery.
Last week, durinf the same call, I talked to 3 extremely helpful Medicare claims specialists at Medicare, who all stated that Medicare WILL pay for the PSMA PET if the ordering doctor states that the test is "medically necessary".
Last week, I talked to a billing expert from Pylarify who stated that Medicare has no written limitations for ordering repeated PSMA PETs as long as the ordering doctor states the specific test is "medically necessary".
I am currently in the process of seeking a 2nd Opinion from another oncologist.
So...my questions to you:
Has your oncologist informed you that you cannot receive a "series" of PSMA PETs that are not related to your participation in various Trials?
If yes, did your oncologist state the reason why you could not receive a "series" of PSMA PETs if you were not participating in a Trial?
Like you, I have no intention of consenting to systemic hormonal therapy (ADT) and chemo therapy before I can be considered for targeted radiation (Pluvicto), but only AFTER evidence of failure for hormonal therapy and then failure for chemo therapy.
Thank you for your concern for my current prostate cancer situation. You are truly a good friend.
No one has told me about a limitation on PSMA PET/CTs. Maybe that is because my rising PSA says I have a recurrence, but so far they haven't found any lesions for them to treat.
1.9 is not a low PSA after prostatectomy. Get a Decipher test. It probably is low (better) because it has taken 7-8 years to get to 1.9. PSMA PET/CT does not pick up small lesions. Multiple PET tests add radiation to your body that could produce secondary cancers later in your life. Your approach makes a lot of sense. Once you get salvage radiation, the QOL "down there" never recovers naturally.
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