Waiting for biopsy: Should I get a PSMA Scan?

Posted by stew80 @stew80, Dec 15, 2024

I have a long wait for a biopsy (9 weeks). My MRI shows 2 lesions and I'm wondering if paying for a PSMA Pet scan now might help to get answers and if the scan can replace the biopsy (or help) in terms of information about staging.

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@jeffmarc

Well, I live in the USA and at Kaiser in Northern California. It takes 6 to 7 months to get a knee replaced same thing with hip replacement. I was able to get my knee replaced in three months in March because people had canceled and I was able to get into their spot. Last year, hip replacement took six months to get it done. If I wasn’t at Kaiser, I could get it done quicker, But they have much better free treatment after that surgery. A PT shows up at your house within Two days and you get biweekly visits. Something you don’t get, if you get treatment outside of Kaiser

I needed to have surgery on a cyst on my face and it was a 2.5 month wait. It started getting bigger, so I finally decided to get it removed, not so fast dude!!!!

One major difference Is that there are many more treatments for cancer than in Canada? There are also tests that are approved here that are not approved in Canada.

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Yes, Canada also lags in drug approvals, but that's unrelated to universal vs private healthcare.

Pharma companies put all their resources into pursuing approvals in the big markets first (especially the U.S. and European Union), then they go for the mid-sized markets like Canada a couple of years later. We'd be in the same situation if we had a private healthcare system; it's just global economics at work.

For example, Orgovyx wasn't approved in Canada until fall 2023, and didn't become widely available until early 2024 (I was one of the first patients on it; my pharmacy hadn't even heard of it yet when I brought in my prescription). Likewise, I needed special authorisation from the Ontario Ministry of Health to start on Apalutamide in fall 2021 — it was already approved by Health Canada, but didn't make it into the Ontario formulary until early 2022.

To make up for that, the drug manufacturers generally offer "patient-access programmes" that provide critical, life-saving cancer drugs for free during the gap between Health Canada approval and when they show up in the provincial formularies.

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@gently

stew80, 9 weeks of anxiety: cruel. Maybe you could get in on a cancellation. Ask to be put on a cancellation list. Or MRI in hand you could find another specialist for the biopsy. The new contrast agent is making the PSMA /PET very expensive for a cash payer. Close to $5000.

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Got a call today that there was a biopsy cancellation, so my date moved up a month! Its now 21 Jan instead of 20 Feb. May not make much difference in the long term but it sure helps to ease the waiting anxiety.

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stew80, sometimes people cancel around the holidays. You might even have more luck. Thanks for letting me know. A month sooner is a lot better.

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Post Prostatectomy in Dec. 2022 and SBR in early 2023.... I had a PET scan (PSMA-Pylarify) at PSA level .44 in June 2024 and 1.06 in December 2024. Scans detected nothing. Not sure if I'm disappointed or relieved. Levels keep rising and tests keep being ordered. They put me on Xtandi for 9 months, which is costing me $675 monthly.

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@aed22655

Post Prostatectomy in Dec. 2022 and SBR in early 2023.... I had a PET scan (PSMA-Pylarify) at PSA level .44 in June 2024 and 1.06 in December 2024. Scans detected nothing. Not sure if I'm disappointed or relieved. Levels keep rising and tests keep being ordered. They put me on Xtandi for 9 months, which is costing me $675 monthly.

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You might consider asking for an FDG Pet scan. Some people have prostate cancer that doesn’t produce PSMA, In those cases, the PSMA pet scan does no good?

I guess you’re not over 65 otherwise your Xtandi Would be free by now. You might consider a different insurance plan, You can change right now.

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@jeffmarc

You might consider asking for an FDG Pet scan. Some people have prostate cancer that doesn’t produce PSMA, In those cases, the PSMA pet scan does no good?

I guess you’re not over 65 otherwise your Xtandi Would be free by now. You might consider a different insurance plan, You can change right now.

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You are correct.... I'm 64...65 in about 5 months. Also did not know about FDG and Xtandi cost after 65. Thank you. May be some light, for a little while, after all. Not sure what treatment options are left besides Chemo.

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Pluvicto is a possibility, They now take people who have not had chemo. It is radiation And you don’t want to stay close to someone for too long for at least three days.

It Works well on 1/3 of people works OK on 1/3 of people and doesn’t work at all on 1/3 of people. If you have BRCA2 it works better according to statistics. If you have PTEN or RB1 it doesn’t work well.

Even though you’ve had a genetic test and it doesn’t show anything you should get a Somatic test on blood or recent Tissue to see if you do have one of those genetic problems. In some people the BRCA2 Genetic error shows up in their somatic test, not their hereditary test. This allows them to take a PARP Inhibitor as the next step in treatment, holding off on any other treatment for now?

If you have not had the hereditary test, you can get it here for free.

Prostatecancerpromise.org

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I have a friend who had prostate Cryotherapy several years ago. He told me what he endured and that his prostate is 'dead'. I assume no cancer recurrence but he didn't confirm that. Is this still a treatment type or are there better ways to treat now?

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@stew80
Are you under Medicare? If so Medicare will pay for treatments including PSMAs.
You won't know if you have cancer until your biopsies. And those biopsies will give you a Gleason Score.

The Gleason score will give your urologist and/or R/O treatment options. When you get the Gleason then asked about not only PSMA (to show if spread outside of prostate) but Decipher which will give a much better diagnosis of the risk of your cancer. Those are the test to asked about after you get a Gleason score.

I know when I got my MRI there were two areas that were suspicious and urologist ordered biopsies. I asked about what % of chance it was cancer or something else. I was told 70% chance was cancer. I was hoping it would not but did come back cancer intermediate risk but follow up Decipher showed low risk and I had radiation only no hormone recommendation if at intermediate.

When I post I only mentioned tests I have gotten and why I got them. I do not feel comfortable recommending tests or procedures I have not personally done or suggest doing them. Every person on MCC who has prostate cancer his cancer is unique to him and what works for another or what is best for another may not be for you.

Do research, asked questions of your medical providers, and if any doubt get a second opinion (I did so I do recommend as helped me mentally know I had same diagnosis and treatments options). The PSMA will allow your medical providers to directly know which treatments are for you.

Good luck and I hope your biopsies come back negative. Just know in today's world there are outstanding treatments now and if caught early (cancer) great outcomes.

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@stew80

I have a friend who had prostate Cryotherapy several years ago. He told me what he endured and that his prostate is 'dead'. I assume no cancer recurrence but he didn't confirm that. Is this still a treatment type or are there better ways to treat now?

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I knew a man who had it and his cancer came back. He lingered 5 more years on different forms of ADT until he passed about a year ago.
They are still doing it - it’s just another “focal” therapy along with heat and ultrasound techniques marketed under different names.
I guess you can treat the whole gland as well, but from what I’ve heard some of the side effects (in some men) are no better than surgery or radiation.

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