4 years and counting

[Skippy3]

I've updated my profile which pretty well reports my history of dealing with PC. This summer, July 2024, a second PSMA PET scan confirmed that the cancer noted on my first PSMA PET scan, November 2021, was alive, well, and growing. Note that this fact runs counter to the idea that my PSA values report a lessening of activity. I think PSA is at best, a marker for some PC, but not all. I received 20 days of IBRT and SBRT radiation, this summer, that went after these hot spots. I was especially concerned about PC in the clivus bone found in my head. In 6 months I get another PSMA PET scan that shows how well the radiation worked.

The problem, with me, is that the normal PSA tests doesn't accurately report what is going on. I have had several DNA blood marker tests to determine if circulating DNA is at all related to the other prostate cancer. So far, nothing is definitive. I will report here if it does.

Before I left Mayo I asked a radiation oncologist about my prognosis. I'm going to paraphrase. If something bad happens in 1 to 2 years I would be surprised, if 5 to 7 years, not so much. Time is obviously limited.

I am relatively pissed off, pun intended, that urination urgency and variation in holding power affects my sleep and my life. I guess, depending on estimated life span, I'm wondering about attacking my BPH problem. Flomax is not getting it done. I have a lot of choices:

TURP, TUIP, TUMT, PAE, laser surgery, electro-vaporization, ultrasound, steam ablation, water jet, HoLep, PVP etc, etc. I have not researched any of these in any great degree. Any comments appreciated.

[Tall_Allen]

A whole-gland TURP may relieve your urinary frequency but may cause incontinence - caught between a rock and a hard place!

Your low PSA prostate cancer is difficult to track. The problem is that low PSA subtypes often do not show up on PSMA PET scans. You might try an ordinary FDG PET scan and track progression with that.

Blood genomic analysis may not be the best either. You may be better off with a full analysis of biopsied tumor tissue (histology, IHC, and genomics).

Docetaxel+carboplatin may work better than abiraterone.

[Skippy3 in reply to Tall_Allen]

Thanks. I'd rather live with the BHP I have than risk making the symptoms worse. I'll ask about FDG PET. You can never have too many scans. I've gone thru a series of genomic tests but no smoking gun shows up.

[Tall_Allen in reply to Skippy3]

Histology and IHC may be more informative than genomics

[Yzinger]

Have you heard of urolift? Sounds awesome from a urination standpoint. Take paint off walls again 😀

[Skippy3 in reply to Yzinger]

I’ve heard of it but know nothing. I would like to chase a cigarette butt around the urinal. 🙂

[Yzinger in reply to Skippy3]

Hahaha. Love this reply

[Hopeful4Cure in reply to Skippy3]

Hey Skippy. I am a member in MBC. I searched for clivus and only you came up. I had a ct last week because of tingling pain and numbness on my left side of face. Radiologist described my clivus as a rare case of destruction. My head hurts on the left side above ear too. WTH? Read your other post from 2 yrs ago. Has your doc said anything recently or what has caused your clivus issue? Thanks in advance

[Skippy3 in reply to Hopeful4Cure]

Sorry you are feeling ill effects. Please keep in touch!!! The clivus bone is a bone and PC loves bone. It showed up glowing in my first PSMA scan. Four doctors basically said don't worry about it and let the standard of care, i.e. ADT do it's work. 1st scan was about a year after diagnosis. The second scan was about 2-1/2 years after that. It was worse than the 1st. My doctor agreed that radiation was be best course of action to go after these hot spots. The clivus bone got 3 treatments of SBRT over 3, really 4 days at Mayo Clinic in Rochester MN. After the first treatment I had a headache and was nauseous. Dexamethasone and some pain killer solved that problem. Treatment 2 and 3 were not an issue. My radiation oncologist promised that I had a 90% chance of this problem being taken care of. I will get another PSMA PET scan in April or sooner. Am happy to let you know how it went.

I have been more worried about the clivus bone problem more than anything else. Things I've read about it were not good. Radiation might be the best near term treatment. Good luck.

[Hopeful4Cure in reply to Skippy3]

Thanks so much Skippy for your reply. I see doc on wed. Since Xmas left lip and gums left side numb. Ct scan from rad stated destruction of clivus. Anything with clivus is rare. I just hope it's fixable. I'll keep you posted too.

[SillyUserName2]

I have come across some research showing that some forms of castration resistant strains barely express PSA.

[Skippy3 in reply to SillyUserName2]

Yeah I know. Dr Sartor has been ordering circulating DNA tests to see if anything can alert us to PC growth. So far nothing positive there. The best thing we got going is the PSMA PET scan. Does that scan cover everything, who knows? Probably not.