Getting a prostate PSA test directly

[bjorn2bwild]

Um, that's a 3:45 HOUR video. Do you have a summary?

I agree as I see it is 3:45 hours, can you recommend a specific time in this video to tune in?

I understand it is long,
my recommendation is to listen to the whole thing at least once, twice if you have prostate issues, it's quite comprehensive.
Members can get the show notes along with a transcript if they prefer to read.

 

[joesxm3]

I recently had a PSMA PET/CT and I asked a similar question. I was told that the PSMA shows that there is cancer, but it is not very detailed. That is why the MRI is used to get a detailed picture of the lesion locations.

In my case, my doctor started tracking my PSA a while ago when it was 2. In 2019 it rose to 4 and he did PSA and free PSA and told me that per the standards I had a 25% chance of having prostate cancer.

I had just rescued my 92 year old mother from the covid nursing home and did not want to get involved in some big project so I chose to wait and see.

The PSA got a bit worse and hit 10 early in 2022. I should mention that the scale for the PSA only and PSA+free seems to be different with PSA number being lower.

I went to a local urologist and saw the APRN. She seemed like she was pushing me right into an old fashioned 12 core grid biopsy. At that time, my friend who works for GE on MRI gave me a podcast with Dr. Busch in GA who is a proponent of the TULSA PRO procedure. Listening to that podcast made me aware to the overtreatment of prostate problems.

I switched to a urologist at a major teaching hospital that was running TULSA clinical trials. He agreed with me that I should have a multi-focal MRI to see if there was a reason to go further. The MRI showed two lesions, one likely to be clinically significant cancer.

I had a biopsy that blended the MRI with US imaging and targeted the suspicious areas and also did the 12 grid. That is said to have a detection rate around 97%.

I had only a couple cores positive and was declared grade group 2 (gleason 3+4). He sent the tissue out for a Decipher genomic test that looks for 22 mRNA biomarkers and it said I was in the low risk category.

Based on that we decided to watch and wait. He said 50% chance of needing a procedure in five years.

This summer I had another MRI and biopsy. There were a few more cores than the first time and the cells were worse. I was declared grade group 3 (gleason 4+3) and told that I need a procedure. I had the PSMA PET/CT to look for metastatic cells and to confirm that the cancer is localized to the prostate.

We met last week and decided that of the various treatment options the TULSA procedure met my criteria the best. My priorities were to stay alive and minimize side effects as well as avoid a long treatment like radiotherapy.

I am having my TULSA next week and will probably make a thread on my adventure once it is over.

For those who might be wondering trans-urethral ultrasound procedure is an incision less process where ultrasound emitters are threaded up the urethra and use heat to kill the cells in the target area. The process is done inside an MRI machine and aside from the margin mapping is completely under robot and computer control. It is a one day visit to the hospital.

This is from Profound Medical (PROF) and seems likely to become a popular for of treatment. If all goes well I will buy some more shares of PROF


P.S. My personal opinion is that people should monitor their PSA but be cautious to avoid over treatment. There are also some genomic tests coming out that could be done prior to biopsy or even MRI that might be better than PSA level.

 

[Car-Guy]

As I understand it, the new gold standard for detecting any PC is a PSMA PET/CT scan. Both in the prostate and anywhere that it may have migrated to in the body.

I recently had a PSMA PET/CT and I asked a similar question. I was told that the PSMA shows that there is cancer, but it is not very detailed.

Yep.

 

[joesxm3]

One other thing about PSMA PET/CT is that the radiation dose is too high to do it over and over. My followup will be PSA at 3 and 6 months and a MRI and biopsy at 1 year.

That may also argue against using PSMA as a general screening tool. Tests like Oncotype DX will probably be better for screening. Some are based on blood, others on urine.

They are starting to use this "liquid biopsy" type tests to assess progress treating other types of cancer as well.

 

[RetMD21]

Yes. It seems very odd to consult SGOTI when the posters (apparently) don't trust their own doctors. The logical solution is a different doc or at least a second opinion, not a bunch of random anecdotes from random SGOTIs.

I agree if your doctor won't answer your questions or you don't trust him/her why not switch.

 

[Trooper]

Are these PSA tests mentioned in this thread (Quest, Ulta) covered by traditionally Medicare? I think not if not ordered by a doctor, but I'm a Medicare noob.

BTW my urologist told me the current thinking on PSA is to test every two years now, not annually.

 

[braumeister]

Are these PSA tests mentioned in this thread (Quest, Ulta) covered by traditionally Medicare? I think not if not ordered by a doctor, but I'm a Medicare noob.

BTW my urologist told me the current thinking on PSA is to test every two years now, not annually.

I have certainly had PSA tests covered when ordered by my doctor, but going to one of those places on your own would be at your own expense. They don't cost much.

Opinions on the value of PSA testing vary all over the place, so there is no real standard these days.

 

[connor77]

...I am having my TULSA next week and will probably make a thread on my adventure once it is over....

joesxm3 - Please do and thank you.

 

[grasshopper]

Are these PSA tests mentioned in this thread (Quest, Ulta) covered by traditionally Medicare? I think not if not ordered by a doctor, but I'm a Medicare noob.

BTW my urologist told me the current thinking on PSA is to test every two years now, not annually.

This is from Medicares.

PSA blood test: You pay nothing for a yearly PSA blood test. If you get the test from a doctor that doesn’t accept assignment, you may have to pay an additional fee for the doctor's services, but not for the test itself.

I am on 11 years of active surveillance have a PSA test every 6 months and have never had to pay for the test. Latest was 2.53 that was 6 months after my HoLEP procedure.

 

[Car-Guy]

Are these PSA tests mentioned in this thread (Quest, Ulta) covered by traditionally Medicare? I think not if not ordered by a doctor, but I'm a Medicare noob.

BTW my urologist told me the current thinking on PSA is to test every two years now, not annually.

I've been on Medicare (MC), well actually a Medicare Advantage (MA) plan, for 7+ years now and have never paid anything for any blood test. (PSA included) Sometimes I get several blood test a year both from my PCP and from a specialist I see. Insurance has always paid 100%. Even at the first of each year, no deductibles are applied. Now with that said, I have no idea if those costs are being covered by MC or MA.

 

[Trooper]

I am having my TULSA next week and will probably make a thread on my adventure once it is over.

Best of luck Joe and thanks for this post and sharing your TULSA experience in the future.

 

[Healthy Lifestyle]

...I am having my TULSA next week and will probably make a thread on my adventure once it is over....

Thanks for sharing your personal prostate issues and plans going forward.
I look forward to following your progress and offer my best wishes for a quick recovery.

 

[bjorn2bwild]

..............
I am on 11 years of active surveillance have a PSA test every 6 months and have never had to pay for the test. Latest was 2.53 that was 6 months after my HoLEP procedure.

If you don’t mind sharing, what was your PSA pre-surgery?
The expectation is for a higher reading post surgery followed by a gradual decline to a new base level after a year or so.
Given that a full HoLEP procedure removes all of the transitional tissue (the pulp), leaving just the peripheral tissue (the peel), where cancer occurs, any subsequent PSA values will be much more accurate.
I am on the same trajectory as you with my HoLEP surgery a few days after you.
I was 1.69 pre-surgery, and will get my next reading sometime this month.

 

[Time2]

This is from Medicares.

I'm not convinced they do!

PSA blood test: You pay nothing for a yearly PSA blood test. If you get the test from a doctor that doesn’t accept assignment, you may have to pay an additional fee for the doctor's services, but not for the test itself.

That's good to know, however, I'm starting to think my doc is not a believer in 6 mo or yearly tests, as in, what does he do with the data. I would like to know if my PSA is rising, if it does, then we will figure out what to do. Before I was on Medicare I had BCBS, they would only pay once a year, and don't make it 363 days or they would deny it. I don't know if they have relaxed that or not. Seems like once a calendar year test should be allowed.

I am on 11 years of active surveillance have a PSA test every 6 months and have never had to pay for the test. Latest was 2.53 that was 6 months after my HoLEP procedure.

I just reviewed my record, A high of 1.8, 5 yrs ago and low of 0.8 more recently.But, the more recently is while taking Finesteride.

 

[grasshopper]

If you don’t mind sharing, what was your PSA pre-surgery?
The expectation is for a higher reading post surgery followed by a gradual decline to a new base level after a year or so.
Given that a full HoLEP procedure removes all of the transitional tissue (the pulp), leaving just the peripheral tissue (the peel), where cancer occurs, any subsequent PSA values will be much more accurate.
I am on the same trajectory as you with my HoLEP surgery a few days after you.
I was 1.69 pre-surgery, and will get my next reading sometime this month.

As of 2/2023 on Finasteride 3 months before HoLep I was 2.4. Pre Finasteride I was always around 4.

 

[bjorn2bwild]

As of 2/2023 on Finasteride 3 months before HoLep I was 2.4. Pre Finasteride I was always around 4.

Interesting, thanks.
Yes, being on a 5 alpha reductase inhibitor certainly muddies the water a bit.

 

[Midpack]

just found out I can order a PSA test directly on Quest Diagnostic on my own without a doc's order. any downside to this?

I've had to order my own from Quest twice, as two PCPs (and a nurse) refused to order it - 'you need to see a urologist right now!' I went to a urologist the first time, and he ordered a needle biopsy. When I suggested we retest for $50, he was insulted. I asked how much a needle biopsy cost, and he got even madder telling me 'I don't have any idea, but what to you care your insurance will pay for it.' Then I was mad...

In both cases, my retest was fine.

In the first case it was caused by the PCP himself doing a DRE on me minutes before they drew blood which included the PSA test. After a little research I found that a DRE can cause an elevated PSA. My PCP quit doing DRE's, and didn't really want to talk about my findings, so I didn't press it.

Doing your own research is a very good idea, but you should definitely listen to and respect what your doctors tell you.

 

[RetMD21]

I've had to order my own from Quest twice, as two PCPs (and a nurse) refused to order it - 'you need to see a urologist right now!' I went to a urologist the first time, and he ordered a needle biopsy. When I suggested we retest for $50, he was insulted. I asked how much a needle biopsy cost, and he got even madder telling me 'I don't have any idea, but what to you care your insurance will pay for it.' Then I was mad...

He could have looked smarter by agreeing with the idea for a retest.

Medicare and most insurance will pay for screening once a year and apparently unlimited tests for other reasons but only if ordered by some sort of health care provider.

Probably I have better success than most at getting people to listen.

 

[Ronstar]

^^ I had 2 PsA tests last year and either Medicare or supplemental insurance paid for both.

 

[RetMD21]

^^ I had 2 PsA tests last year and either Medicare or supplemental insurance paid for both.

As I said you can get nearly unlimited PSA tests if coded correctly

 

[Trooper]

As I said you can get nearly unlimited PSA tests if coded correctly

I think that's the key. "I want a PSA test cuz I'm curious" likely wont be covered if I understand correctly.

 

[RetMD21]

I think that's the key. "I want a PSA test cuz I'm curious" likely wont be covered if I understand correctly.

The patient's curiosity doesn't count unless he can get a medical professional to submit an order.

 

[ChrisC]

I recently had a PSMA PET/CT and I asked a similar question. I was told that the PSMA shows that there is cancer, but it is not very detailed. That is why the MRI is used to get a detailed picture of the lesion locations.

In my case, my doctor started tracking my PSA a while ago when it was 2. In 2019 it rose to 4 and he did PSA and free PSA and told me that per the standards I had a 25% chance of having prostate cancer.

I had just rescued my 92 year old mother from the covid nursing home and did not want to get involved in some big project so I chose to wait and see.

The PSA got a bit worse and hit 10 early in 2022. I should mention that the scale for the PSA only and PSA+free seems to be different with PSA number being lower.

I went to a local urologist and saw the APRN. She seemed like she was pushing me right into an old fashioned 12 core grid biopsy. At that time, my friend who works for GE on MRI gave me a podcast with Dr. Busch in GA who is a proponent of the TULSA PRO procedure. Listening to that podcast made me aware to the overtreatment of prostate problems.

I switched to a urologist at a major teaching hospital that was running TULSA clinical trials. He agreed with me that I should have a multi-focal MRI to see if there was a reason to go further. The MRI showed two lesions, one likely to be clinically significant cancer.

I had a biopsy that blended the MRI with US imaging and targeted the suspicious areas and also did the 12 grid. That is said to have a detection rate around 97%.

I had only a couple cores positive and was declared grade group 2 (gleason 3+4). He sent the tissue out for a Decipher genomic test that looks for 22 mRNA biomarkers and it said I was in the low risk category.

Based on that we decided to watch and wait. He said 50% chance of needing a procedure in five years.

This summer I had another MRI and biopsy. There were a few more cores than the first time and the cells were worse. I was declared grade group 3 (gleason 4+3) and told that I need a procedure. I had the PSMA PET/CT to look for metastatic cells and to confirm that the cancer is localized to the prostate.

We met last week and decided that of the various treatment options the TULSA procedure met my criteria the best. My priorities were to stay alive and minimize side effects as well as avoid a long treatment like radiotherapy.

I am having my TULSA next week and will probably make a thread on my adventure once it is over.

For those who might be wondering trans-urethral ultrasound procedure is an incision less process where ultrasound emitters are threaded up the urethra and use heat to kill the cells in the target area. The process is done inside an MRI machine and aside from the margin mapping is completely under robot and computer control. It is a one day visit to the hospital.

This is from Profound Medical (PROF) and seems likely to become a popular for of treatment. If all goes well I will buy some more shares of PROF


P.S. My personal opinion is that people should monitor their PSA but be cautious to avoid over treatment. There are also some genomic tests coming out that could be done prior to biopsy or even MRI that might be better than PSA level.

Your journey seems very similar to mine this summer, except we used a different genetic test (Oncotype DX, known as Genomic Prostate Score or GPS) and my treatment will likely be hormonal therapy with radiation EBRT, which is likely to be my best chance for controlling the localized prostate cancer -- I'm really concerned about microscopic traces of prostate cancer beyond the margins or just outside the shell.

I started tracking PSA in 2019 with a baseline score of 2.6 at age 66, with known prostate cancer and other cancer in my family. It started trending upwards, very slowly but I started seeing a Urologist when it hit 5.0 in 2022. The urologist suggested a biopsy and I said let's wait for that until we get an MRI (and you really have to be an advocate for yourself and know exactly what standard of medical care is appropriate). I didn't think a "blind" biopsy with him poking all around was appropriate and I read that fusion-biopsies, with MRI and ultrasound guided directed biopsy tissue sampling appears to be the evolving state of the art -- it just so happened that my urologist's office did not have the equipment or the facilities, which are expensive, to perform the fusion biopsy, though he stated that his office was working on getting insurance clearance, equipment and facility authorization.
So, we kept on monitoring the situation.

In May of this year, PSA hit 6.9 and we ordered an MRI, which read suspected cancer in 2 areas -- meanwhile, I consulted with
Duke Cancer Center, and the specialist there recommended a molecular urine test, EXoDX (which is experimental and not covered by my insurance), which revealed very low grade traces of cancer, but the specialist said this was very favorable findings -- just wait a year for a biopsy.

In August of this year, my urologist had received the necessary equipment and authorization for a fusion biopsy, which we did and the biopsy revealed cancer in 5 cores, one of which was significant but I was scored Gleason immediate favorable 7, 3+4 and I was leaning toward radiation seed therapy, after consultants basically ruled out surgery or ablation type treatment like HIFU or Cryotherapy. (I never heard of your Tulsa procedure.) Surgery is always an option but the problem with that is if the cancer is beyond the shell -- and MRIs and PET-SCans cannot discern microscopic prostate cancer outside of the prostate shell, then that slow growth cancer will continue to grow and you might wind up with "salvage cancer treatment", which a friend of mine had 10 years after surgery! And I had the PET-Scan with no spread beyond the shell, which is very favorable for now.

What has steered me to hormonal treatment and EBRT is the genetic testing results for me, which disclose a highly aggressive cancer in my case. The test scores moved my status for Gleason 7 intermediate favorable to Gleason 7 intermediate unfavorable.

Good luck with your treatment and thanks for sharing your journey. I'll likely begin my drug treatment by the end of the year.

PS. I'm not understanding the reluctance shown by some here over the PSA screening -- it's painless and should be a part of every male's blood work and annual exam after 50 years old! And for those who are African-American (like me) which have a proven occurrence of this cancer in greater levels than other ethnic or racial groups or have the cancer in their family (like me) -- PSA screening should be a no-brainer -- my son will get his PSA screening level next year at age 40.

PSS. I found resources at the Prostate Cancer Foundation and Patrick Walsh's "Guide to Surviving Prostate Cancer" very, very helpful. https://www.amazon.com/Patrick-Walshs-Surviving-Prostate-Cancer/dp/1538726866

 

[Time2]

PS. I'm not understanding the reluctance shown by some here over the PSA screening -- it's painless and should be a part of every male's blood work and annual exam after 50 years old! And for those who are African-American (like me) which have a proven occurrence of this cancer in greater levels than other ethnic or racial groups or have the cancer in their family (like me) -- PSA screening should be a no-brainer -- my son will get his PSA screening level next year at age 40.

Part of the problem is, they don't know what to do when you have a high PSA, well actually they know what to do, more tests! False positives are high, so 70 out of 10 men may be given tests or even biopsies that are unneeded and with risks and complications..


"PSA has a false positive rate of about 70% and a false negative rate of about 20%. Although screening for prostate cancer with PSA can reduce mortality from prostate cancer, the absolute risk reduction is very small"


And even worse 2 out of 10 men that have cancer will not have a high PSA.


Even so, it is comforting to get PSA tested once a year and find it is within bounds.

 

[joesxm3]

ChriC,

Thanks for the detailed post.

I have been taking care of my 90 year old parents so the idea of going for multiple doses of EBRT would have been a problem. Plus it is over an hour drive to my center.

You are right about the micro-metastasis. I saw one doctor talking about it and he said that almost all prostate cancer patients have some amount of micro cells escaping.

My Decipher test last year ranked me as low risk but this year it put me at the 85% spot, confirming my doctor's assessment. It said that I would be a candidate for multi-modal therapy which I take to me some sort of radiation in addition. My doctor has not mentioned this.

TULSA is a new procedure approved in 2018 but not yet by insurance. It stands for trans-urethral ultrasound ablation. The go up the urethra with an array of 10 ultrasound emitters and control the ultrasound beams to heat up and kill the target cells. This is done inside an MR machine that also measures temperature in real-time, all under computer control.

It is a one day visit, but with heavy anesthesia and a 7 day catheter afterwards.

I don't want to get too off topic in this thread. After have the procedure I will make a separate thread.