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PSA 9.4 Active Surveillance

ArtIntel profile image
17 Replies

I'm 64. My PSA gradually increased from 5.1 in 2016 to 5.8 in February 2021; now, one year later, it's up to 9.4, in February 2022. For many years prior to 2016, my PSA was in the 3's; it has been very gradual up until recently.

Everything down there seems to be working,...I have no symptoms except for an enlarged prostate and frequent urination but only during the day, and I account that to taking a handful of supplements and drinking a lot of water. I requested my primary doctor to order an ExoDx Prostate (urine test); it's supposed to determine if a biopsy is necessary and a Cytokine blood panel, which measures inflammation. I have been doing active surveillance. I have another follow-up with my doctor in about 30 days, and we will decide on a direction.

I posted this on an Active Prostate Cancer Group, so please disregard if you have already viewed or replied.

I would appreciate any advice!

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ArtIntel profile image
ArtIntel
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17 Replies
redonthehead profile image
redonthehead

I am not well versed on it, but wonder if favorable EcoDx/Cytokine results are sufficient to rule out having a biopsy based on your PSA change. Inquire about having a 3TmpMRI to look for possible lesions

edit: I am assuming you have never had a biopsy.

Tall_Allen profile image
Tall_Allen

You say you are on active surveillance but you didn't post any of your biopsy results that would have put you on active surveillance. What was your Gleason score? Stage? how many positive cores? What % cancer? Who is your active surveillance program with?

leach234 profile image
leach234 in reply to Tall_Allen

Doesn’t sound like he’s had a biopsy.

dentaltwin profile image
dentaltwin in reply to leach234

As surveillance goes, that ain't very "active".

AlanMeyer profile image
AlanMeyerModerator

Hello ArtIntel,

I don't know anything about the ExoDx test and can't offer you any advice about that. My reading of your posting is that you have not yet had a biopsy and are reluctant to get one unless you really need it, and that you are looking for other forms of testing to try first. In addition to ExoDx, here are a couple of other ideas:

1) You could get another PSA test.

PSA testing can be off for a variety of reasons ranging from errors in the testing lab (mixing up samples, failing to properly clean equipment leading to contamination, inaccurate calibration, errors in reporting results either in the lab or at the doctor's office)) to conditions in your body other than cancer that are affecting the results. Here is the URL of a web page that identifies some of those conditions universityhealthnews.com/da... . If you get another test, be sure that you haven't had sex, a digital rectal exam, heavy exercise or bike riding, certain supplements, etc., for a couple of days before the test.

2) An MRI test.

This is not as sensitive as a biopsy and is largely used to help identify questionable areas that should be used in a "fusion biopsy" to ensure that the biopsy needles are inserted into the most likely cancerous spots. If it reports nothing and if the repeat PSA is lower, and the ExoDx test is negative, then you might ask the doc about holding off on a biopsy. If it does report suspicious spots, it can help you to get a more accurate biopsy.

Best of luck.

Alan

cesces profile image
cesces

You seem to be missing a lot of potential tests.

Something is wrong.

You need to get some second opinions from some major medical centers.

And change your current treating doctor while you are at it.

For some strange reason either he is avoiding some real testing, or you are and he is enabling that avoidance.

If I were to hazard a guess, it would be the second as opposed to the first.

gordee09 profile image
gordee09

5 years ago I had similar numbers but was concerned about the sudden increase. Demanded a 3T MRI and they found a tumour (4 3 ) on the anterior portion of my prostate. I had 2 sets of biopsies prior to the MRI and they only found a low grade tumour in one core. I got the tumour removed using HIFU (Dr Stephen Scionti) in Florida… (partial abalation)… I am 4 plus years and my PSA is stable around 1.14-1.29… good luck

leach234 profile image
leach234

Don’t be a fool. Get a biopsy tomorrow! 9.4 is high and the tumor may have already escaped the prostate. Should have gotten the biopsy like I did in the 5’s. Ended up being an aggressive Gleason 8! Contained but with positive margins. I was lucky. I was going to wait another 3 months and get PSA checked again but decided against it at the last moment and went ahead with the biopsy. Saved 3 months plus got into surgery 2 months early due to a last minute surgery cancelation. Saved 5 months! That tumor would have been outside the prostate if I had waited. Remember if you pick a good surgeon theres’s going to be a line in front of you!

Currumpaw profile image
Currumpaw

Hey Artintel,

Having been there before you I would suggest you read about and consider a mp 3.0 T MRI with a real time biopsy, preferably a trans-perineal biopsy. The trans-perineal virtually eliminates the chances of sepsis that the trans rectal is known for and also allows biopsy of areas of the prostate that the trans rectal can't reach. This type of biopsy can be likened to a sniper with a scope who has his target in the cross hairs as opposed to a farmer with a shotgun that hears a noise and sees a shadow yet pulls the trigger--just to be sure.

You need to know what you are dealing with.

TRUS biopsies and Artemis biopsies should, in my opinion, be in the past.

Currumpaw

Adf2529 profile image
Adf2529

Active surveillance does not mean sitting on uncomfortable or incomplete information. Did your doc ever suggest you should get a MRI and biopsy?

tallguy86 profile image
tallguy86

Every person and Pca is rather unique. However, there are similar characteristics. You mention your PCP however, if you haven't seen a urologist I suggest you do so asap. You said, "Everything down there seems to be working,...I have no symptoms except for an enlarged prostate and frequent urination..." Well everything down there isn't working is it? Your body is trying to tell you something. Some diseases and cancers can often present silent symptoms. The jump in your PSA would be very concerning to me. There are some individuals who discount symptoms; others are in denial about the possibility of Pca. When my PSA reached 4.29 in 2014 my PCP suggested it was time to see a urologist. I did. A biopsy was done and I had Pca. T1c. Low grade, GS 6. Three cores positive 20-40% ca. I chose AS. My PSA continued to rise slowly. I had another biopsy and then genomic testing indicating a GPS of 40-Intermediate Risk. In 10/2019 my PSA was 11.90. I chose SBRT and in July 2020 had 5 fractions. I had no side-effects from TX. My libido is great and so are my erections. I now experience dry orgasms. That has been MY Pca journey. Those were MY decisions. My point is I spoke with lots of experts in their fields, did lots of reading on valid and reliable research, explored and carefully weighed all options.

WilsonPickett profile image
WilsonPickett

You’ve gotten a lot of good advice here, what are you doing does not appear to be active surveillance. Follow the advice for an MRI to first see if there’s a lesion, if so there’s no escaping a biopsy, as it’s the only way to know for sure.

leach234 profile image
leach234

I don’t understand peoples reluctance to get a biopsy. Simple in office procedure that takes 10 minutes and can save your life!

GeoffNoLongerAS profile image
GeoffNoLongerAS

I also would encourage you to see a urologist ASAP. You do not provide any information about your location or prior testing. It would be helpful to post the information.

I was diagnosed in November 2008 from a biopsy. Through a fortunate series of events I was able to join an AS study at a local research hospital. I had done quite a bit of research on AS studies being done at the time. All had the requirement of a positive biopsy with Gleason less than or equal to 6 (some accepted 3+4=7) in order to enter the study as well as a PSA under 10. All had specific protocols regarding testing, imaging, biopsies and visits with the urologist on a regular basis.

I lasted on AS until early 2020. My PSA was steady at 3 early on, then slowly climb to about 7 at the end. I had biopsies about every 2 years. Not the most pleasant experience (one put me in the hospital with a blood infection). At the end an the pathology report from an MRI guided biopsy raised my Gleason to 4+3=7 and required treatment.

If you have not yet found a urologist, I would urge you to do so. Currently, the only way to determine a Gleason score is with eyes on the tumor by a pathologist.

Good luck going forward and I hope you receive good news.

ArtIntel profile image
ArtIntel

I'd like to thank everyone for their knowledge, information, suggestions, and experience! I will keep you updated over the next few months on my decisions and progress. If anyone has recommendations or referrals for doctors, hospitals, etc., I live in Los Angeles. Thanks!

Cetma profile image
Cetma

X2 with Leach and all the others on moving on this asap, the mri then biopsy then treatment needs to happen sooner not later😁

ArtIntel profile image
ArtIntel

Just following up: I made an appointment with a prominent Prostate Oncology doctor in Los Angeles who wasn't very concerned about the rise in PSA or the fact that it had doubled. He ordered an MRI with UCLA and also suggested I get a cardiac calcium CT. He also wasn't too concerned about me being on testosterone for about the past 10yrs which my primary integrative medical doctor prescribes. My cardiac calcium score came back as a zero which is down from 7.2 in 2001. The MRI revealed an enlarged prostate which he commented was about double the size it should be (I don't have the exact number yet), which would account for the elevated PSA, which was down to 7.1 from the 9.2 a couple of months earlier but showed no signs of prostate cancer. His recommendation was to test my PSA again in 6 months and repeat the MRI in one year.

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