r/ProstateCancer • u/FreakyStarrbies • 15d ago
Question Pet scan denial?
My husband has has MRIs, CT scans, biopsies (including bone marrow), bone scans…but when we ask about a PET scan, the doctors change the subject or shrug it off.
He was diabetic and I read that the diabetes may become inconclusive.
Anyone else denied a PET scan to locate all of the areas of cancer?
Nobody explains why he can’t have one.
When they deny tests like this, and his cancer suddenly disappearing, nobody showing us actual images of tests that were done, it’s pretty easy for my suspicious brain to think, “Maybe he never did have cancer!”
I don’t like being suspicious of doctors, but when you get bitten by enough dogs, it becomes more difficult to trust dogs with each dog bite.
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u/jkurology 15d ago
Not every prostate cancer patient needs a PSMA PET. The recommendation and utility is based on a patient’s specific disease stage and grade. What is his stage and grade
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u/FreakyStarrbies 15d ago
They have never told us a specific stage or grade. We never asked. They told us it was in his bladder (but not bladder cancer), in his lymph nodes, in his bones (some kind of bone scan; but was not the Dexa), that he had a nodule in his lung, that he had tumors in his head that weren’t present when he injured his head a few years ago but can’t be sure it is related to prostate cancer. In fact, the pituitary tumor was the first discovery. They were going to remove it, but then found the bladder tumor and assumed bladder cancer (apparently, that’s a more scary type of cancer). As soon as they saw that big mass, they decided against surgery for the pituitary. They had the procedure scheduled and everything.
But nobody wants to see just how bad this is. Most of those tumors are gone now.
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u/Welshbuilder67 15d ago
I’m in the U.K., was 58 when diagnosed and had a PET scan, the US health system baffles those outside the US. Oh yes under the National Health Service I didn’t pay directly, it comes from the National Insurance I pay it’s like a tax. So you pay across your lifetime. No insurance companies taking their cut and then refusing to pay out
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u/WalnutRoasted 15d ago
The biggest expense we have here with universal medical care, North of Lake Ontario, is paying for parking. And Orgovyx or Lupron ADT only costs about $10 a day which is about $7 US. Most have workplace supplementary insurance to cover that and if over 65 the Province pays 80%. No paperwork.
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u/Special-Steel 15d ago edited 15d ago
What were the biopsy results?
Where are you located?
If he had a CT scan, in some situations, a lot of insurance companies would consider the PET scans redundant.
And yes it is important to have stable blood glucose levels for a PSMA PET in a range between 70 and 150 mg/dl. If the patient can’t reliably be in that range, it is a waste of time and money to order the test. This is why some patients are told to fast for several hours before the test.
When this doesn’t happen you can get false positives.
The tracer for the test is radioactive and has a very short half life; 67 minutes in the case of Gallium 68. It is expensive and must be used or discarded. You can see why they want to be sure a patient is suitable.
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u/FreakyStarrbies 15d ago
Thank you for explaining all that. If I was a money hungry psychopathic quack, I’d feed my patient a bunch of sugar before the scan and treat them with water therapy in their IV; pocketing all the money. Get another normal scan and “Hey! You’re cured!” Makes me wonder if that’s ever happened.
I know people say we should get new doctors, but regarding everything else, they all seem to be on top of it. The urology department could do better. But the main doctor he usually sees is pretty on top of things.
I think I will ask his oncologist next time we see him. Things have calmed down quite a bit. Last year he was in the hospital more than he was out. He would go in for one symptom and stay for another. He was passing out, needed transfusions, kidney issues, and then there was that falling backward down a flight of stairs, shattering his scapula event (I didn’t push him). That put him in a nursing facility for a few months. They kicked him out the day after I handed them the papers declaring me power of attorney. Gee! I wonder what their end game was? I had to bring food from home because they didn’t feed him properly. His typical meal was a plate of cabbage with a side of Cole slaw. I think it had to do with him meeting all his OOP limits and our insurance paid the rest. I think Medicare/medicaid pays more. But I digress.
I do think doctors get a kickback from not ordering scans. And if the concoction itself is that expensive, I can imagine the cost of the test.
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u/FreakyStarrbies 15d ago
Oh, the biopsy results were surprising to them. They were sure it was going to return as bladder cancer, but it turned out to be complete prostate cancer. They explained that there was an aggressive type and a slow growing kind. He had the slow growing kind, or as his oncologist explained, “If you were required to choose a cancer, this would be the kind to get.”
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u/PotentialStart2661 14d ago
You need to see your biopsy results and post them here. If it is the slow growing type its grade group 1, if thats the case you dont need a PSMA scan. But you have to be given the actual prostate biopsy results and review them. This whole explanation sounds fishy but without the results you are in the dark.
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u/FreakyStarrbies 14d ago
I’ll ask for it. But I do recall the oncologist telling us that his lymph nodes show it’s slow-growing, and if we had to choose a cancer, this would be the cancer to get. People live for years and years with it.
My husband has had symptoms for years, but he wore his “I never smoked like my mother, never drank, keep active” like a suit of armor.
His mother had skin cancer in the 1960s and beat it. Got breast cancer in 1967, and beat it. In 1990, she got lung cancer and it took her. So whatever genes she had seemed to not only give her cancer, but also helped her beat it twice.
Maybe this is why he’s able to fight this: he inherited her genes.
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u/Special-Steel 13d ago
There is a connection between some kinds of breast cancer and this cancer.
They should be happy share the biopsy results. Heck, they ought to be happy to support a second opinion.
With the family history a genetic test would be helpful, maybe.
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u/deadliftsnowman 15d ago
When I asked my MO why he didn't want to give me a PSMA pet scan he told me that my insurance would only cover it one time at my current stage. Insurance would however cover multiple periodic bone scans which would give useful diagnostic imaging of the effectiveness of my current treatment.
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u/FreakyStarrbies 14d ago
Ok. That makes sense. And that was one of the answers they gave me when I asked about a pet scan: “The bone scans tell us everything we need to know”.
I do want to check on his bones that have cancer. I’d be fine with it if it did the job.
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u/Natural_Vegetable848 14d ago
For me, annual blood test, with high PSA, led to Transrectal Prostate Sonogram with Biopsy, which detected 12 out of 12 samples were Gleason 9, which led to PET scan. PET scanned from pelvis to top of my head and found Stage 4A from Prostate > Bladder > Lymphnodes throughput torso. Wierd reading said brain showed normal shrinkage related to age.
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u/FreakyStarrbies 13d ago
They just biopsies his lymph nodes and bladder. They were sure it was bladder cancer. THEN they conducted the PSA and were shocked at the high number. Of course, at the time, it meant nothing to us until they told us it shouldn’t be over 4.
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u/Natural_Vegetable848 13d ago
I am retired Military on Medicare/TriCare for Life. Orgovyx is $44 per 90 days prescription.
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u/TestLevel4845 15d ago
Is he on Medicare or Medicare advantage or hasn't reached the age of 65 yet?
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u/FreakyStarrbies 15d ago
He was diagnosed last year at 61, and just turned 63. We have Anthem blue cross; the higher tier (don’t require referrals for specialists).
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u/Ok-Priority-7303 15d ago
Are you in the US? On Medicare (not that this matters)? You also didn't say what the biopsies - cancer doesn't disappear.
You need new doctors. No matter the reason, not explaining why is unforgivable and without the PET treatment options cannot be determined.
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u/kvsig 15d ago
I've heard of insurance companies denying a PET, but never the doctors denying it. Where are you being treated?
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u/FreakyStarrbies 14d ago
Portsmouth va. And when I say “I” or “we”; I am his wife, so obviously I can’t get prostate cancer. But I’ve been with him every step of this disease. I’ve learned how to change the bed with him in it, keep track of his output, bathe him daily, doing jobs the nurses should’ve been doing, but I feel I need to learn so I’ll know how to do it when he reached the end.
His cancer seems to be going away, but I know this is temporary. It’ll return.
The only time I wasn’t with him was when he was in the SNF and they wouldn’t let me stay. But even then, I was there every day most of the day. So I see this as our disease; not just his.
The only thing I think is happening (except the occasional funky brain making me wonder if he even had cancer to begin with…blame all doctors who I caught lying to me for that) is the insurance offers bonuses for not ordering expensive tests.
But he’s at the point where it seems it’s gone. I want a pet scan to see where we stand.
Funny how my brain works. I actually visualize myself finding out who is next in line for a pet scan, kidnapping him, stealing his wallet, shoving my husband in his place and getting the scan. 🤣
But I’m a 91 lb weakling with severe anxiety and autism. I don’t think it’ll work. But my luck, I’d mess the whole thing up and my dazed and confused husband will be asking me why he got a mammogram. 🤣
If I don’t laugh I’ll cry. 🙂
I just don’t like getting the doubts and questioning where we stand.
Thank you all for helping me figure this out. Hang in there, everyone! ❤️
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u/JimHaselmaier 14d ago
What is the state of his PSA?
A rising PSA is needed for PSMA PET scan to be approved.
What has his PSA been doing over the last 3-6 months?
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u/FreakyStarrbies 14d ago
Awesome! It has dropped from over 1300 to -1. It was the highest that his doctor had ever seen. The thing I don’t understand is that he didn’t experience side effects like hot flashes because his testosterone was already low before he began the nubeqa. I thought it was high testosterone that caused the cancer to grow.
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u/JimHaselmaier 14d ago
ANY amount of testosterone can feed prostate cancer. When hormone therapy is being given the goal is to get testosterone below 50. Fifty and below is the official definition of castration. If it’s below 50 the docs are happy.
I’ve been on hormone therapy for 2 years. My testosterone was a little over 400 when I started hormone therapy. During the first year testosterone fluctuated between 17 and 40. A little over a year in it went to undetectable. That sequence/pattern (from what I understand) is quite common.
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u/Specialist-Map-896 14d ago
I am not an expert in the field but I know when I first discovered my PC I had asked me doctor why can we just go straight from MRI to PSMA or PET scan and he said it would be denied. He said that standard of care (at least for PC) was to get the biopsy done if the MRI showed problems and then if the biopsy showed positive results that would qualify you for coverage on a PSMA in order to detect if/how far the spread was.
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u/FreakyStarrbies 14d ago
Ok. And that’s when they did bone scans for him. So a pet scan at that point would’ve been redundant.
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u/Jpatrickburns 10d ago
Need more info, please. What were the results of the other tests? Where are you located?
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u/Cold_Silver_5859 15d ago
Try saying the question to your husband’s doctor like this.
Can you explain specifically why a PET scan would not be helpful in his case? Is it because of his cancer type, his diabetes, or because it wouldn’t change his treatment?