PSA test didn't detect my cancer. Wh... - Advanced Prostate...

Advanced Prostate Cancer

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PSA test didn't detect my cancer. What about post treatment monitoring?

45RPM profile image
22 Replies

Hi there, just diagnosed, however PSA testing test did not detect my cancer. Levels were rising slowly for three years: 0.4, 0.5, 0.7. So according to conventional threshold of <4, it was not detected. So this raises a concern that post treatment, the standard monitoring test may not work for me.

Anyone have any experience with this?

If PSA doesn't work for me, are there other tests that can be used?

Could it have been that the small but steady rise WAS actually indicative, but Dr's missed it due to conventional wisdom?

Best regards, 45rpm.

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45RPM
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22 Replies
Tall_Allen profile image
Tall_Allen

Did you get a second opinion from Epstein on your biopsy? If not, it's worth the $275 cost.

pathology.jhu.edu/departmen...

The reason for your low PSA is probably because you do not have much prostate cancer (I'm not sure why you're posting on the advanced prostate cancer site). The microscopic amount of pattern 4 (2% of a core that only has 30% cancer) means that you are still an appropriate candidate for active surveillance. The PNI is a minor risk factor. If you decide to go on active surveillance, you may want to get a genomic analysis (Decipher or Prolaris - whichever your insurance will cover) of your biopsy cores to assure that your risk of progression is low.

45RPM profile image
45RPM in reply to Tall_Allen

Thank you so much. those are great suggestions.

As for posting on this site, thank you for pointing this out, I didn't clue in it was only for advanced cases, wonder if you know of a more suitable site for my case?

Tall_Allen profile image
Tall_Allen in reply to 45RPM

Try the prostate cancer network site:

healthunlocked.com/prostate...

Magnus1964 profile image
Magnus1964

The biopsy is what determines prostate cancer. Your PSA readings are very low but rising. Now might be the time surgery. At this point it would be a good shot complete irradiation.

45RPM profile image
45RPM

Thank you Nalakrats. Yes found by a nodule with DRE. I will look into the T.

Don't know biopsy technique - it was 12 cores, is there a way to tell on the pathology report?

45RPM profile image
45RPM

Thanks for your reply Magnus

Actually those levels of psa can and do mean cancer. My tumor was out of the prostate at less than 4. Very soon get an mri and if you can afford it a Psma pet scan. Bone scans don’t show anything until a psa of 10 so they are useless. If you get a biopsy do it mri guided in a hospital not a office. Mine at psa of 1 was completely missed and blown off because I was 65 and it’s normal. Pick a good cancer center and oncologist. Tall Allen will have a recommendation in your area.

45RPM profile image
45RPM

Thanks Carlo, wondering still if you have any insights then to my original question - how do you monitor if PSA doesn't indicate? Or did that not apply to you?

in reply to 45RPM

Only way that The drs found out what was going on was to do an mri. I was scheduled for surgery and a few days before they scheduled the mri. Found it to be inoperable. They have no idea from psa readings until the scans prove what they think. They still say 0 to 4 psa is ok. When I asked my family dr about it he had no answer and told me his father had the disease. See an oncologist ASAP and demand the mri.

j-o-h-n profile image
j-o-h-n

From Dr. Google:

If Your PSA is Low

In general, a low PSA is a good result. However, there are several reasons a PSA screening level may be artificially low including taking statins to lower cholesterol, anti-inflammatory drugs and obesity (body fat decreases the amount of PSA circulating in the blood stream). Be sure to discuss these with your doctor.

Additional Testing

The Prostate Health Index was recently approved for the detection of prostate cancer. The PHI is a simple blood test that combines three tests in one. Research has shown that the test is better at detecting prostate cancer than the traditional PSA screening. The test also predicts the likelihood of progression during active surveillance.

Because this test is very new, it is possible your physician has not heard of it yet. If you are interested in the test, talk with your doctor and discuss your risk, the test, and how to use the information from the test.

While none of these tests are conclusive on their own, when performed in addition to a PSA test, DRE (Digital Rectal Exam), and a biopsy, they can provide each patient with more information about their specific cancer and can aid in both the diagnosis and decision on treatment. Read more on this and further additional testing.

Maybe by slowing down to 78RPM they'll be able to check you out and you'll also sound better to Victor....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/09/2020 11:09 PM DST

45RPM profile image
45RPM

thank you john. Great info, and bonus rpm schtick to boot :)

ron_bucher profile image
ron_bucher

After prostatectomy, PSA becomes a pretty reliable indicator of whether you have prostate cancer. What is your Gleason score?

45RPM profile image
45RPM in reply to ron_bucher

3+4

ron_bucher profile image
ron_bucher in reply to 45RPM

My biopsy was 3+4 when diagnosed in 2006. Pathology on prostatectomy was 4+3. Have had two recurrences, and am in remission again after radiation in 2008, and Taxotere and more radiation in 2017. My only regret has been not getting diagnosed sooner when my PSA was <4 but doubling.

45RPM profile image
45RPM in reply to ron_bucher

Thank you for sharing this Ron, I am glad to hear you are in remission. Re: regret... what would you have done differently?

ron_bucher profile image
ron_bucher in reply to 45RPM

Knowing what I know now, I would have gotten PSA tests every three months instead of waiting another year. My PSA went from 1.2 to 2.4 to 5.8 over about 3 years. The 2.4 was a red flag that I was too uninformed to take seriously.

in reply to ron_bucher

Me too

addicted2cycling profile image
addicted2cycling in reply to 45RPM

Another Helllooo 45RPM from a 33 1/3 guy ;0)

IMO, I would question the accuracy of the results from a 12 core TRUS since the method is outdated because very little of the prostate is sampled. The 3TmpMRI can reveal "HOT SPOTS" missed by a TRUS thus allowing a better "TARGETED BIOPSY" via the perineum reducing infection and sampling areas unable to be reached by a TRUS. Second and even 3rd review of your samples is a very good idea.

My saturation transperineal 3D Prostate MAPPING Biopsy is the closest to a post prostatectomy biopsy because in my case 100+ core samples were read from 95% of my prostate all while it was still in its original position.

When PSa levels are within set parameters the 18F-DCFPyL PSMA PET and Ga-68 PSMA PET scans can show what's outside the prostate if cancer cells have decided to congregate in remote areas of the body.

sciencedirect.com/science/a...

45RPM profile image
45RPM in reply to addicted2cycling

Thanks a2c. I will look into that.

SUPERHEAT12 profile image
SUPERHEAT12

My psa was realtively low but rising and I had a Gleason 5+4 (9) with it out of the box....Pay attention to it and look for other markers than psa

You may want to consider having genetic testing. It can determine viable effective treatment options via precision medicine.

mperloe profile image
mperloe

PSMA PET scan might be helpful. Not sure the other scans are too helpful. Some MDs have consider CEA, CA19-9, CA15-3 and CA 125 may be helpful. I'd check with you med on.

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