Hello Folks

[earthwindandwater]

New here and tired. Having my Prostate removed in June, pet scan on Tuesday, PSA is 0.1.

[Tall_Allen]

Why are you having a prostatectomy instead of radiation?

[earthwindandwater in reply to Tall_Allen]

Taking part in my private version of the SIMCAP Phase 2.5 clinical global trail. Wish me luck buddy.

[Tall_Allen in reply to earthwindandwater]

Good luck. I hope RP works as well as RT for debulking.

[j-o-h-n]

Greeting EWW,

(Important) Please tell us MORE data and when doing so update your bio. Just a quickie, what was your Gleason score?. All info is voluntary but it will help you and help us too. You've come to the right place for help, information and camaraderie.

Good Luck, Good Health and Good Humor.

j-o-h-n

[earthwindandwater]

No worries, on it John. G9

[Tony666]

so if I understand the simcap trial correctly, it is for people who have metastatic prostate cancer and wants to see if debulking the mother ship with surgery, along with other metastatic treatments such as adt or doxital, can be beneficial. Interesting.

[earthwindandwater in reply to Tony666]

I'm hoping for the same results as you. He did a DRE on me and liked what he felt. I'm hoping for a clear Pet scan in a few days, last years CT came back with six mets in my lungs gone. What was your met situation and how high was your PSA?

[Tony666]

I probably didn’t have Mets. I say probably because the psma scan was ambiguous. It showed a slight uptake (about SUV 2.5) in two ribs but after driving down the psa to near zero with a combo of adt, enza and abi they did a second psma scan and it showed a similar uptake. The docs felt that sometimes things other than pca can cause a false psma positive and if it was pca it would have been impacted by the intense adt. They then did a different psma test (sodium nitrate -NaF - which is a better detector of pca in bone) which didn’t show anything. So they “think” it “probably” wasnt a met.

I was very happy in the end with my protocol. I started with Gleason 9 (5+4) and psa of 9.8 but the mri indicated it he lesion was very small (about 5% of the prostate) and no extensions felt on the Dre. After 6 months of intensive adt my psa was near zero. Then surgery. When they biopsied my removed prostate, there was no evidence of disease! Also, by six months after surgery my T came back. Now 4.5 years after surgery psa is still non-existent. I still get my psa checked every 6 months. I think the protocol of 6 months of intense ADT (adt+enza+abi) followed by surgery makes sense IF the amount of lesion is not too large. It doesn’t work for everyone though so I always felt if it didn’t work I could always do radiation

[earthwindandwater in reply to Tony666]

So, you were or may have been stage 2 or 3 not 4b as me. It is still good news for you. I will still need ADT after surgery for at least 2 more years according to the doctor, but I'm happy to have found someone who is not afraid of the surgery, even though he told me that it is a very difficult job.