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3 negative PSMA PET scans with PSA doubling every 4 weeks
Prostatectomy 10 years ago, Gleason 4-3 with 1/3 bladder positive. PSA going up after 1 year then 39 radiation followed by Lupron then Eligard. Took vacation then 1 year later PSA was doubling every 3 months. Started Orgovyx with throat and mouth swelling then Xtandi and had a seizure episode. After 7 years of ADT I’m on vacation again and PSA is doubling every 4 weeks now. Had 3 PSMA PET scans with the highest PSA scan at 3.1. All three scans came back negative and both the F18 and G68 tracers were used. I’m having very uncomfortable pelvic and right femur bone pain especially when I lie down at night. I’m to the point that I want the Drs to find something and just maybe have a target to go after. Bloodwork is way low especially platelet count which is still dropping and now in the 40,000 range. I’m now seeing a hematologist oncologist to help with bloodwork. Does anyone have an idea of how the cancer can be found since I probably don’t express the PSMA protein? I try to stay active but the hormone therapy makes it hard. With all that’s going on I still refuse to let this disease define me. Thanks
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Perhaps Axumin or FDG scan might help. Older tech but as you say PSMA not helpful in your case.
Also, a bone scan might be in order for that pelvic pain.
Phil
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3 ReactionsThanks Phil, my last bone scan was about 2 years ago before the pain started which was negative. I guess after 10 years I want to know more than just it’s there and it’s aggressive but where it is we don’t know. I have full faith in my medical team and they are trying to give me answers but until then all they can do is treat the whole body. I hope I’m not being unreasonable
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3 ReactionsYou're certainly not being unreasonable by any measure. How frustrating. I'm glad you have confidence in your team and I hope they'll find the cause and treat soon. The Bone Scan may be able to locate.
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6 ReactionsAcoope- yes being on ADT and having a PSMA-PET scan can be an issue . Bone scan may be first option. Keep in contact with your Dr's and tell them you want definitive answer where the PSA is coming from . Ask about a MRI with tracer too - I have hear some Dr's do that here in BC, Canada. What is your last 4 PSA tests look like? Any other health issues ? Lots of great experience here . Let us know what Dr's say . James on Vancouver Island .
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1 ReactionA C-11 Choline PET scan is also available to spot active cancer that doesn't express PSMA.
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11 ReactionsPerfect. Hopefully this is the missing link I’ve been searching for. Thanks
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