Best Scan for low PSA: Had robotic... - Advanced Prostate...

Advanced Prostate Cancer

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Best Scan for low PSA

Davidl3940 profile image
27 Replies

Had robotic surgery at Mayo 2/7/16. Gleason 4+3. 2 years after surgery PSA 0.12. Had F18 Auxium Scan on 1/30/18. Everything showed negative. Looking at PSMA Scan.

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Davidl3940 profile image
Davidl3940
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27 Replies
middlejoel profile image
middlejoel

Why?

Davidl3940 profile image
Davidl3940 in reply to middlejoel

Wanted to see if local cure could be found before enlarging.

Tall_Allen profile image
Tall_Allen

You are wasting your money getting PET scans while your PSA is so low. If you are trying to decide on salvage radiation, you will have to make that decision without a PET scan. You didn't mention any adverse pathology or the pattern of your PSA, which would help you decide.

Davidl3940 profile image
Davidl3940 in reply to Tall_Allen

The cancer was graded as PT2c. All margins negative, semi vesicles negative, 16 lymph node were also negative.

Tall_Allen profile image
Tall_Allen in reply to Davidl3940

That's all very favorable. What about the PSA pattern? Did you have a Decipher test on your prostate?

Davidl3940 profile image
Davidl3940 in reply to Tall_Allen

No decipher test. Gleason pattern 4+3. No tertiary patterns.

Tall_Allen profile image
Tall_Allen

No PSA pattern - just the one reading at 0.12?

cfrees1 profile image
cfrees1

If my memory serves (and it often does not as of late), the PET Choline needs PSA above 2.0 and they believe the Axumin might read as low as 1.0. Anything below 1.0 will not be read I don't think. So scans at that level are a waste. I had an Axumin scan when I was below 2.0 and it came back negative, but I think it was a new test and the hospital wanted to provide some training to their staff. That is my theory anyway. My PSA was too low, but I was the 6th person in the state of MN to get the scan.

Tjc1 profile image
Tjc1 in reply to cfrees1

I was the fourth at Baltimore university

What's your PSA history, that would help.

Davidl3940 profile image
Davidl3940 in reply to

3 months after surgery 0.04. It gradually went up over 2 years to 0.12. I thought it was going to line out at 0.08. There was some non cancerous prostate tissue left on bladder. The prostate was fused to the bladder. The surgeon said he spent allot of time trying to remove the tissue. This could give some OSA but PSA level should level out.

Tall_Allen profile image
Tall_Allen in reply to Davidl3940

You are right that PSA from benign tissue would have disappeared long ago. Here's a study that suggests SRT in men with favorable pathology if the PSA shows a consistent growth pattern, as yours has:

pcnrv.blogspot.com/2016/08/...

tango65 profile image
tango65

UCLA does the GA 68 PSMA with a PSA of 0.2 or higher. They have an ongoing clinical trial. At Munich TUM they do the same test at a PSA of 0.4 or higher. Best sensitivity for this test is around PSA 1 or higher.

E2-Guy profile image
E2-Guy in reply to tango65

When my PSA had risen to 1.1, I wanted to go to UCLA for the 68Ga PSMA scan and my insurance would not cover the $2650 charge since as of 8/2017 it was not approved in the US. Had the scan done in Melbourne, AU for $600 US and it only identified three sacra LNs. I had those three along with five other suspicious looking ones removed via robotic surgery at UCI (8/2017) which reduced my PSA to 0.57. I was told that the 68Ga PSMA scan had poor validity at PSAs below 0.7. Since my last PSA (about two months ago) was 0.64, I assume that the scan didn't pick up everything.

cesanon profile image
cesanon in reply to E2-Guy

ronronHU

Can you tell me where in Melbourne, AU you got the Gallium 68 PSMA scan?

Do you have contact information for the facility at which you received it? Such as a name, phone number and/or email address?

And any tips for how a U.S. Citizen might go about getting the test there?

E2-Guy profile image
E2-Guy in reply to cesanon

Cesanon,

Dr. Declan Murphy made the appointment for me at the Peter MacCallum Cancer Centre in Melbourne. His contact info is:

CONTACT DETAILS

Level 1, 84 Bridge Rd, Richmond VIC 3121

Phone (03) 9421 6425

Fax (03) 9421 6372

Email info@cancerspecialists.com.au.

I applied for my AU Visa on line ($20 US). I am an American (74 years young) living in Thailand so the trip for me to Melbourne was a no-brainer ($800 US). Dr. Thomas Ahlering at UCI in CA performed the surgery robotically on a Tuesday afternoon (five hour surgery). They had awakened me at midnight and made me walk the halls, home Wednesday afternoon, flew to Phoenix Thursday evening (3 hour layover in Vegas) and attended the Diamondback's ball game on Sunday. Other than what the hospital gave me during my one night stay, I took no pain meds and experienced zero discomfort. I was told not to lift anything heavier than 5 lb. for three weeks...didn't listen and toted my two overseas check-in bags plus my 15 lb. carry-on bag to the airport; even put my carry-on bag in the overhead compartment by myself since I didn't want to look like a sissy in the eyes of the flight attendants! The surgery was a 'piece of cake'. You can read my history in previous posts if you are interested.

Wishing you my very best,

Ron

jdm3 profile image
jdm3

Here is a comparison of different scans...

pcnrv.blogspot.com/2016/12/...

I had a PSMA scan at Johns Hopkins through a clinical trial. There are many around the country. You can search clinicaltrials.gov with the key words you want.

hadleycash profile image
hadleycash

I got a psma pet at NIH in Maryland in Sept. Of 2016. My psa doubling has always been like lightening. Leading up to the scan the previous three months I went from .6 to 1.4 to 2.88... my Gleason from post prostatectomy pathology is 5/4. My doctor was dubious that with my psa, still considered quite low for imaging detection, would find anything. It did... some right retroperotoneal lymph nodes lit up. I decided, after much research to go after the cancer directly via retroperotoneal lymph node dissection (RPLND). As soon as the scans were done, I started on Lupron just over two months prior to surgery. The RPLND is major surgery! Basically couldn't eat for nearly two weeks... ANYTHING, couldn't keep anything down so the cut me off until I could. Went from 155 pounds at 6 feet tall, to 130! Now the good news. Within 6 months post op, I was fully recovered and up to 160 pounds. Better yet, I have had an undetectable psa since post surgery... nearing the 1 1/2 year mark! Hey... maybe they got it all! We just keep playing "kick the can", until, maybe one day, we can't even find the can!

George71 profile image
George71 in reply to hadleycash

Hadleycash,

I am trying to decide whether to go for the RPLND when it shows up on scan -- or blind radiation of the pelvic nymph nodes in the pelvic area -- what do you think -- I had 4 of 10 lymph nodes with micro -- PCa in final pathology report, prior to surgery they thought I was clear of any PCa outside the prostate

Davidl3940 profile image
Davidl3940 in reply to George71

google.com/url?sa=t&source=...

Davidl3940 profile image
Davidl3940 in reply to George71

youtu.be/NkqizmvqJPo

Dr. Kwon has done interesting work on curative cute outside prostate. He is at Mayo.

cesanon profile image
cesanon in reply to George71

Radiation treatment of certain of my lymph nodes killed almost all of my non-replaceable B4 type t-cells. My t-cell tests now look like that of an Aids patient.

So radiation treatment of lymph nodes would not be my first choice of treatment. I think they chose radiation because these nodes are hard to reach with surgery and near important arteries.

Still, I would try something else first.

SUPERHEAT12 profile image
SUPERHEAT12

This stuff is tricky. At a Gleason 9, 5+4, my psa was almost 0 for several years after IMRT radiation and ADT plus supplements with Dr. Myers. Thought I was cured and quit taking Avodart when I lost my insurance more than 10 years after diagnosis. PSA started gradually doubling. Went back to Dr. Myers, he put me back on Avodart and PSA came down but he wanted scans. Scans showed spots that my local MO thought were more arthritis than mets. However, although psa is still very low, he ordered new scans. Confirmed bone mets throughout the skeleton and now am on Xgeva as well as continuing with Avodart and Metformin (which Dr. Myers found to help with cancer). New MO read some study that some patients with high Gleason numbers that psa does not reflect the extent of the disease. Sneaky stuff.

Superheat 12

Davidl3940 profile image
Davidl3940

I have followed this guy at Mayo. Interesting work. youtu.be/NkqizmvqJPo

larry_dammit profile image
larry_dammit

Congrats. Wishin* you continued success

Break60 profile image
Break60

I think your Psa was too low to reveal anything. I was instructed to wait til 2.0 before getting the scan and it worked.

Bob

Break60 profile image
Break60

I was told to wait til Psa hit 2.0 and it was effective for me.

Bob

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