PSMA testing coming to South Florida...if you can get a decent urologist to prescribe it for you...

[sm60]

Guys on the East Coast now have a choice other than flying to California!

Unfortunately, my urologist sternly refuses to allow me any type of imaging whatsoever prior to a random biopsy.

But for those without that particular problem...i.e. with an informed urologist who isn't just interested in stab and fry, there's this notice I received after signing up for their waiting list:

========

To : undisclosed-recipients:;

Subject : PSMA "Pylarify" Update - Coming Soon! Next Steps...

Date : Tue, Jun 08, 2021 06:43 PM

Dear PSMA Priority List Members -

Since Lantheus received FDA approval recently for their PSMA PET Scan Agent, "Pylarify", we have been working non-stop with their agents, employees, producers and distributors to bring PSMA to South Florida as soon as possible.

We expect to bring Pylarify to our facilities in a matter of weeks. As discussed on previous PSMA Priority List Updates, we do not yet know the exact number of doses they will produce per week, nor how frequently. However, we expect to begin by scanning approximately 5-10 patients per week.

In order to obtain your PSMA PET scan, here are the next steps you can take to be sure you are "ready to go" once you are contacted to schedule your scan:

1. Valid prescription: In order to legally order radioactive doses, a valid script is needed. A valid script must have the patient name, date of order, date of birth, the test name ("PSMA PET SCAN"), a valid indication (e.g. "Prostate Cancer restaging", "Prostate cancer suspected biochemical recurrence", "Prostate Cancer Initial Staging," etc.) and the signature of an authorized healthcare provider.

2. Appointments: Initially, PSMA doses will not be produced in South Florida, but they -can- and -will- be flown in and calibrated specifically for your time and appointment. Therefore, we may ask you to arrive a bit earlier than usual for your appointment (as doses may arrive early which could allow us to begin your scan before your scheduled time). Also, flight delays may slightly delay your scan start time. We ask for your understanding in this regard, and as always, we will do everything in our power to deliver what we promise.

3. Â Billing and payment: Insurance companies have not yet established reimbursement codes for Pylarify. Therefore, our policy (as with other new PET scan agents) is to charge our usual $1000 PET scan cash price in addition to -our direct cost- of Pylarify (we do not up-charge). PET Imaging Institute must pay in full for each dose before it is flown in and available to you. Given these factors, we will request payment prior to your scheduled appointment.

Finally, a brief word about our PSMA Priority List and determining the order in which patients will be scanned. Based upon the number of expected weekly available doses, patients will be contacted to be scheduled: (a) In the order in which they joined the PSMA Priority List, (b) based upon patient's availability for pre-determined scheduled time slots and dates, (c) willingness to self-prepay according to #3 above and (d) fulfillment of #1 above.

If you are local to our facilities and are interested in joining our "PSMA Standby List" to potentially fill-in a last minute available PSMA appointment, please email us at: [e-mail] and you will be contacted directly with details.

We are very excited to soon begin scheduling!

As always, if you choose to have your PSMA PET Scan with PET Imaging Institute, begin gathering the information as outlined above.

Thank you all once again for your interest in PSMA PET Scans for Prostate Cancer. If you have any questions, please let us know.

Regards,

Barry L. Charnick, MD

Medical Director, PET Imaging Institute of South Florida - Ft. Lauderdale

======

If anyone knows of a doctor they think may prescribe this for me based on a phone consultation, I would be very grateful. I have very limited medical care options here in rural northern Maine, and everyone seems to be strictly VERY OLD SCHOOL.

[Tall_Allen]

No one would give it to you pre-biopsy. It is not validated or approved for that purpose. In fact, PSMA is not well-expressed in early prostate cancer development.

[sm60 in reply to Tall_Allen]

Thanks for your reply, Allen.

This (re: quote below) is where I have been told "with 90% certainty" that I am at. What logic can there then be in not proceeding directly to a highly accurate imaging system and skipping the invasive and side-effect ridden biopsy...at least for right now?

IMO, a good imaging agent like Galium 68 should soon render having actual tissue to examine largely moot.

---------

"Conducted in Australia, the trial included men diagnosed with localized prostate cancer that was thought to be at high risk of spreading beyond the prostate. In the study, an imaging method known as PSMA PET-CT was substantially more likely to detect metastatic tumors in these men than the standard imaging approach used in many countries, which involves a CT scan and a bone scan."

cancer.gov/news-events/canc...

=======

Yes, all the men in this Australian trial also had already been biopsied, but what would be the real harm in reversing the order to PSMA-biospy, rather than what we are doing now (biopsy-poor imaging?)

If NOTHING shows on the PSMA, then the invasive procedure (and costs, potential serious side effects, time, etc.) would have been saved, right?

[Tall_Allen in reply to sm60]

That's a trial about high risk patients. It detected metastases in them. You are not high risk, as far as you know. It is likely you do not express PSMA. Such a scan would be useless for you. You have to take it one step at a time. Right now, your anxiety is a bigger problem than any prostate cancer you may or may not have.

[sm60 in reply to Tall_Allen]

My younger brother has "high-risk" PC proven, and my dad had it, too. My PSA is 16...my brother is 9. The urologist who told me I was "90%" based on digital exam, PSA, and family history told me I can't have imaging because "not a single urologist anywhere will prescribe it prior to biopsy;" and, "no one will prescribe imaging until you are proven to have cancer via biospy"...which DOES NOT impress me, AT ALL.

I notice you say nothing, really, about my logical argument about PSMA-biopsy v. "biospsy-poor imaging," Allen. Care to explain?

I am very suspicious about a C. Albicans or other fungal causation for my prostate abnormality and urinary symptomology which my urologist will not even discuss with me.

[Tall_Allen in reply to sm60]

I think you should go ahead with the biopsy. I can only repeat that it makes no sense to look for PSMA (or any other metastatic protein) in cancer that may not express PSMA. You can probably pay someone in India or elsewhere if you are determined to get it.

[sm60 in reply to Tall_Allen]

What is PC that "may not express PSMA?" Never heard that before. TIA...

[Tall_Allen in reply to sm60]

PC doesn't express PSMA until it progresses. Perhaps you are confusing it with PSA.

[sm60 in reply to Tall_Allen]

OK. Thanks. No, I was assuming almost any level of mets would show up with PSMA imagining.

[Tall_Allen in reply to sm60]

Metastases would show up but cancer in the prostate might not. Get a "high risk" diagnosis first. You're putting the cart before the horse.

[sm60 in reply to Tall_Allen]

Not sure how I missed this little gem for two days... I am TRULY fascinated by this statement, Alan, and would love to hear more about what mechanism would cause the PSMA test to miss cancer still contained within the prostate while catching it elsewhere.

[Tall_Allen in reply to sm60]

In your settings, you can set responses to be delivered to your inbox.

I already responded " PC doesn't express PSMA until it progresses. Perhaps you are confusing it with PSA."

[sm60 in reply to Tall_Allen]

One of your statements is definitive: "doesn't...until," while the other is indefinite/open-ended: "might not." To which would you like me to assign more weight? TIA...

[Tall_Allen in reply to sm60]

PSMA expression varies with Gleason score, and within Gleason scores. It is inappropriate for the use you are imagining. There are some blood "biopsies" in test, but no one thinks any kind of imaging can replace a biopsy. To boot, the currently approved PSMA radio-indicators (Ga-68-PSMA-11 and Pylarify) are excreted by the urinary tract, masking uptake in the prostate.

[sm60 in reply to Tall_Allen]

Thanks, Alan. Works for me.

I'm not particularly interested in Gleason scores. I'm more interested in healing. If it isn't expressing PSMA, the way I see it, I don't have to worry as long as I keep up the monitoring, the diet, and the helpful supplements. No mets, no worries here.

Sure sounds like a PSMA PET would tell me that...i.e. no mets, no over-reaction or invasive probing (that can cause infection, cause metastasis, and/or incontinence/sexual dysfunction) for this cat.

[Tall_Allen in reply to sm60]

Just because the cancer in your prostate doesn't show up on a PET scan doesn't mean that it isn't there. As I said, currently approved PET scans mask cancer in the prostate, will not show many GS7 cancers, and show no tumors less than about 5 mm. For all those reasons, you cannot avoid a biopsy. It's all moot anyway, since no competent doctor or hospital in the US would agree to give you the PET scan at this point.

if you are more interested in healing, there are no changes in diet and supplements that will do that.

The top institutions are switching to transperineal biopsies that do not cause infections. The other possible side effects that scare you are so rare as to be virtually non-existent. I've had 3 biopsies with none of those. I get it that you are scared, but avoidance is not the solution.

[sm60 in reply to Tall_Allen]

If it's in the prostate and NOT METASTASIZED that's good enough for me to stick with vigilance, monitoring and homeopathy. I am not easily scared. I CAN AND WILL AVOID all unnecessary biopsies, "Gleason scores," AND the resultant fear mongering and hustle.

A negative PSMA PET would be perfect for MY situation and treatment.

This is offensive as written: "no competent doctor or hospital in the US would agree to give you the PET scan at this point." Competence with regard to proper prostate cancer diagnosis and treatment is certainly not that for which our current "slash and burn" medical establishment is known. We can't even prescribe obvious prophylactics such as proper iodine intake and Vitamin D3 levels.

I CAN AND WILL find a competent doctor to prescribe me a sufficient imaging test, or I will do without all that the current corrupt and profit-only-permeated medical establishment has "to offer."

[Tall_Allen in reply to sm60]

Your avoidant behavior is imperilling your life. When I was first diagnosed, I sought the assistance of a psychotherapist to help me work through the crippling anxiety issues I was having.

If you have prostate cancer, and if it's not metastatic now, it will be after you treat yourself. Consider that the reason that you can't get the PET scan may NOT be because you are right and the rest of the world is wrong.

[Hidden in reply to sm60]

There are a few men on this site who took the path you are now considering. I believe they all ended with metastatic pca....Im not sure why you are so cavalier but it you don't change course your future is all but certain for metastatic prostate cancer.

In the mean time, can you kindly move on to another site because this site is for men proactively treating advance prostate cancer.

[sm60 in reply to Hidden]

Are you a moderator giving orders?

[Hidden in reply to sm60]

Nope. Just a guy with stage 4 pca with common sense and common decency.

[Gabby643 in reply to Tall_Allen]

Early on there was a lot of anxiety about my cancer, not so much after 1 1/2 years.

[sm60 in reply to Gabby643]

I’m feeling you, bro. Thanks.

[Justfor_]

The underlying issue here has to do with following the money. 68Ga PSMA isn't attached to any patent, so there isn't any commercial entity behind it distributing "kickbacks". The same holds true for the 18F PSMA 1007. A "new" one had to be invented, thing that took some time! It is currently there approved and ready for general deployment. It is a mere "coincidence" that 68Ga was approved just a notch earlier, but limited to a couple of institutions.

As soon as the commercial interests behind the new entrant find their way with marketing, you will see it prescribed at large. I know I will be flamed for this, but equally well know that this is also part of the whole setup.

[sm60 in reply to Justfor_]

Sure fits my feelings about everything I've seen so far. Thanks. You will get NO flaming from me, my friend.

[addicted2cycling in reply to sm60]

sm60, thank you for posting this information.

Reading that the scan will be available in Ft. Laud. could be fortuitous for myself since my Dr. is in Ft. Laud. and the facility is only 3 hours driving time from my house. Actually it is only minutes from where my mom lived when alive, go figure.

Next PSA in Sept. might indicate a need for another scan and if so I will check with my Dr. to see if he is in agreement. I am 6 years out from GL10 treatment with a minor GL6/7 recurrence in 2018 so????

[sm60 in reply to addicted2cycling]

Glad you found the info helpful.

I'd drive the 18 hours each way from northern Maine if I could get someone willing to write me a script. (I don't do T.S.A.)

Best wishes for good health for you!

[Savoy in reply to sm60]

You and me both, brotha

[dhccpa]

How about seeing an oncologist? Wouldn't he or she order it?

[sm60 in reply to dhccpa]

How does one get to see an oncologist without a referral from an urologist though, or actual proof of cancer (which I still lack?) I'm going to see if my GP will order it. Doubtful, but worth a try.

[dhccpa in reply to sm60]

Good question. I thought you could simply make an appointment, but perhaps not.

[JPOM in reply to sm60]

I've said this before but maybe bears repeating: how is it, with all our technology, the bottom line for diagnosing PCa is biopsy and then a guy looking at tiny pieces of your gland through a microscope? Gotta be a better way. I never found it, so succumbed to the biopsy "procedure" (God forbid they should call it an operation), because I reduced my PSA from 17 only to 14.8 or something, using a sh*t ton of herbs and supplements. Fear. It's all about conquering the fear.

[sm60 in reply to JPOM]

Right. I've reduced mine from 20.3 to 16.2 doing the same... Fear IS a major killer. You're right. AND...succumbing to treatments that are oftentimes worse than the disease is right up there with it.

[JPOM]

Had this been available to me, I NEVER WOULD HAVE GONE THRU THE TORTURE OF A BIOPSY!! some guys claim it was nothing. Some believe the needle could drag PCa cells into the blood stream or lymph vessels. And some of us don't like BEING LIED TO by people who aren't qualified to determine jack sh*t. And some of us don't appreciate doctors who tell us, "We'll only take 6-8 core samples" because they'll use the in-bore live 3T mpMRI scanner... then afterwards, you find out they took 20, and turned your gland into swiss effing cheese!! I'm with you all the way, friend. Do what YOU feel is right, using the data that YOU have collected.

[sm60 in reply to JPOM]

Thanks. Heavy, heavy additional food for thought. God bless.

[addicted2cycling in reply to JPOM]

Saddened to read about your horrendous biopsy procedure.

I've had 2 TRUS procedures, first was a 16 core taken without Lidocaine and second a 12 core taken with Lidocaine both without issues during and after. (just fortunate)

My next 2 biopsies were Saturation Transperineal 3D Prostate MAPPING Biopsies. First provided 100+ core samples and second provided 64 core samples. Following the first I had a Foley Cath. in overnigh, had it removed in early AM then drove 3+ hours home without issues and 2nd did not need the Foley so drove home immediately after and 2 days later bicycled 132 miles during our local Relay For Life 12 hour overnight event. NO RESULTING ISSUES.

As with anything in life results "Could Be Better, Could Be Worse" regarding biopsy procedures and my results were 2nd part being Gleason 10.

[JPOM in reply to addicted2cycling]

everyone's different, brother. as i said, "some guys claim it was nothing." i believe exercise is a huge factor; admittedly, I don't do enough. 10 mins of stretching in the morn, then free weights and 50-70 crunches is about all i can muster. i have bone marrow cancer also, so my red blood cells suck: low hemoglobin, low count, most are enlarged and misshapen. Result? all the exercise in the world won't improve how much oxygen the blood actually holds and delivers to my body. Plus I'm 74 yrs old. Had my fun, time to pay the piper/ Time to get a gun, place it in my diaper. 😜

[sm60 in reply to JPOM]

Oh bro, don’t! This world ain’t worth it compared to the next one. Please just be sure you’re all good with the big guy.

[JPOM in reply to sm60]

i'm never serious with poems, brother-man. But thanks for looking out for me. Much appreciated. 😆

[larry_dammit]

My dad had a pet scan , wasn’t much better than the regular bone scan with contrast. Stage 4 with Mets here .since 16. Get your family doctor to order a CT and MRI both with contrast and you will be able to see almost everything that a pet scan will. Just saying

[sm60 in reply to larry_dammit]

PSMA PET is 24% better (I'm pretty sure I've read) than anything "standard" being used to image across the US now....i.e. standard imaging is MISSING cancer mets for 24% of guys.

Thanks for the reply, and all the best to you and yours.

[sm60]

I'd like to think so, but my urologist has his back up now, and is not listening at all. He is so darned "tunnel visioned" the train is going to smack him right in the kisser any second.

[larry_dammit]

That’s probably true but no good if you can’t get one. Just saying.

[sm60 in reply to larry_dammit]

True, dat!

[luis85715]

I HAD PROSTATE CANCER STAGE 4, I SEE AN ONCOLOGY HERE IN TUCSON ARIZONA BUT THEY DO NOT KNOW ANYTHING ABOUT HOW TO GET THE PSMA SCAN PLUS THE THERAPY, ANY SUGGESTIONS, MY PROSTATE WAS REMOVED IN 2012 BUT NOW METASTASIS TO FEW SPOT ON BONE, BEEN WITH DIFFERENT ANTI ANDROGEN MEDICATION, LUPRON EVERY THREE MONTH, CHEMO, RADIATION, RADIATION 223 TREATMENT, INMUNOLOGY BUT NOW MY PSA IS AROUND 65 LAST TEST. ANY ALTERNATIVES THAT THE NEW TREATMENT PSMA IN ARIZONA.

[sm60 in reply to luis85715]

It is only available, currently, in the Western USA at The University of California, San Fransisco, and at UCLA Medical Center. You can google the details. God bless and good luck to you!

[RCOG2000]

Axumin PetCTis supposed to have high sensitivity and specificity when PSA is above 2.0. I wonder if this could be a consideration for you

[sm60 in reply to RCOG2000]

Haven’t heard of it. Will have a look...

Thanks.

[addicted2cycling in reply to sm60]

sm60 wrote >>> " Haven’t heard of it. Will have a look... "

Take note what text from AXUMIN link reads

axumin.com/patient

Axumin® (fluciclovine F 18) is an advanced diagnostic imaging agent, or radiotracer, that’s used with a positron emission tomography (PET)/computed tomography (CT) scan for men who have had prior treatment for prostate cancer and now have elevated prostate specific antigen (PSA) levels.

[KAgolf in reply to addicted2cycling]

husband's urologist got him approved for Axumin before any treatment except for 1st ADT injection. Axumin is good but the PSMA is supposed to be better. The G68 is only available at UCLA and UCSF but approved for anyone who can mfg. it--apparently not easy. The newest approved imaging (5/27/21) is approved for ANY institution and is apparently easy to mfg. It was developed mostly by Memorial Sloane Kettering; that is what is coming to Ft Lauderdale and hopefully to more of our areas....piflufolastat F 18 or PYLARIFY. This is NOT a trial, it's the real deal. mskcc.org/news/finding-hidd...

[sm60]

Thanks. I haven’t had prior treatment, so I guess that rules me out.

[KAgolf]

I am not sure if there are any qualifiers--know the article mentions recurring and men getting ready to have RP or radiation...mskcc.org/news/finding-hidd...

[sm60 in reply to KAgolf]

Thanks!

[sm60]

From MayoClinic.org:

We are going to see a lot of changes in the pathway for diagnosing prostate cancer in the next decade," says Dr. Lomas. "The first change that we'll see here in the U.S. is likely the use of prostate MRI to help decide if a patient should have a prostate biopsy. With high-quality MRI, such as the MRI technology in use at Mayo Clinic, we may be able to safely avoid prostate biopsy in many men."

Data from the PROMIS trial, published in The Lancet in 2017, indicate that using multiparametric-MRI to triage men might allow 27% of patients to avoid a primary biopsy and reduce the number of clinically insignificant cancers diagnosed by 5%.

———————-

Embrace change people, especially when it reduces risk and increases accuracy.

[sm60 in reply to sm60]

Took the Mayo Clinic to silence our resident slash-and-burn apologists. I wonder if they are still into blood letting and leeches, too?

[sm60 in reply to sm60]

Hello?

[sm60]

I also just spoke with the people at Pylarify and they are telling me the map on their website that currently just lists their manufacturing facilities will begin listing imaging locations “within 3-6 weeks”—which means BOSTON for me, very, very likely instead of Ft. Lauderdale and Galium 68.

He was VERY SYMPATHETIC to my concern about urologists still being resistant to any imaging prior to biopsy, and said they will definitely take a script from a GP.

Guess I’m not so “uppity” after all...