PSA-ZERO , yet petscan showed tumor on left clavicle and neck

[GMAN2667]

Hi ALL - I havent posted much on here but my wife Granica4848 has a few post about me - i was 53 when diagnosed with Gleason 9 all mets , prostate removed * radiation that area- had a bone scan 3 months later which found large tumor on my T9 , was so large i was like hunchback - radiation to that spot , i guess it worked - CT scan said it shrunk so started Xtandi , was rough ! side effects - switched to Zytiga /presidone , much much better with luron shot every 3 months -- follow up with my family doctor whom ive been going to since i was 18yr old- I'm now 56 yrs old - him and my urologist cant believe i have never had a pet scan or psma pet scan - so he ordered a reg one since PSA zero **** and wanted a clear scan to help me ---well turns out is showed tumor left clavicle and side of neck -remind u my highest PSA ever was only 4.9 !! yes Gleason 9 ALL METS --SO ........

QUESTION - why do we rely so much on PSA ? i know its the only way to determine if prostate cancer comes back ......or is it ???

[Bret5]

I wonder if the tumor is prostate cancer or possibly some other type of tumor. Maybe a biopsy is in order.

[Izzygirl1]

My husband is at this over a year and hasn't had a pet scan either. They gave him a full body bone scan and xrays which determined it was widespread throughout his skeletal system and told us no pet scan was needed yet. His neck hurts often but the doctor thinks its from being on his devices (phone/ipad). PSA is low but has never been undetectable. I will be interested in the replies you get to your question and I hope your oncologist has a treatment planned that will take care of your neck and clavicle. Sending you ((HUGS)).

[Tall_Allen]

Some kinds of PCa do not produce PSA, or the tumors may be some other kind of cancer. Either way, a biopsy should have been done.

[GMAN2667 in reply to Tall_Allen]

thx TALL !!-- what kind of Prostate cancer DOESNT show in PSA ? nervous , and no biopsy done because Lupron and Zyrtiga started and shrunk this tumor already, so they say - next petscan in 30 days

[Tall_Allen in reply to GMAN2667]

Many types. It showed up on an FDG PET/CT?

[GMAN2667 in reply to Tall_Allen]

yes sir !

[Tall_Allen in reply to GMAN2667]

It's probably not PCa then.

[GMAN2667 in reply to Tall_Allen]

thx - i hope not , it was a standard pet scan i just looked up - thx for the info

[Benkaymel]

I have very low PSA but mets not shrinking and some new appearing. My MO is arranging a biopsy of one.