Conflicted/Confused, any Guidance/Advice out there?

WHATS AN RP? I had 28 RT treatments. Correct on PSMA PET SCAN- shows nothing if PSA is below 2.0, per my medical oncologist.

Absolutely, TWO POINT ZERO after RP is pretty high; I can't imagine the MD's would let it get that high with regular testing, as we all have regular bloodwork. But even if it is 2.0 it could be coming from a focal lesion which can be addressed.

I have looked into as much information as I possibly could. I was stressed trying to make the decision. Since making the choice, I feel relieved and looking forward to getting on with my life. Thank you for your kindness and prayers. I wish you the very best as well.

Take care.

@ecurb , RP stands for radical Prostractemy (where they remove the prostrate). The removal of the prostrate should bring levels of PSA to undetectable. A PSA 2.0 would be a concern if had RP.

I think your medical oncologist meant .02 for undetectable. A PSA of 2.0 would be an issue after RP. However depending on how high your starting PSA level was a 2.0 after radiation would be good if high to start with. Radiation treatments that are successful will cause PSA levels to go down over time. According to UFPTI oncologist their goal is below 1.0. I was told it can take up to 1-2 years to bring down the PSA to the sustained lowest level.

When you still have a prostrate your PSA can still rise for non cancer related things and thus monitoring it to see if continues to rise is important. Should not have a rise of PSA if had RP and if so needs attention.

Most of those who have RP will also have hormone treatments which also reduce the PSA levels drastically as they hinder testororne which feeds cancer cells. Did you have hormone treatment (usually called ADT) along with your radiation treatments? I did not because my PSMA was negative, bones scan negative, and my Decipher test came back low risk where my biopsies rated me at intermediate.

That is why I and many others really suggest not only second opinions but the PSMA, bone, and Decipher test to give you the best overall diagnosis of your prostrate cancer, your risk level, and treatment options that are out there.

UFTPI=? Asked my wife to verify the doctor said- > 2.0 is when a PSMA pet scan is done. Not .02. My cause was agent Orange. My PSA never exceeded 14. , but the cancer was stage 4 Gleason 9-10. Said it had meta sized to pelvic lymph nodes so RT was done last year at this time along with Arbiterone/ Prednidone.-ADT. It’s been below 0.01 until I had in incontensnce causing anal fissure/ hemorrhoids. Went to 0.28 PSA. Now I m taking medicine to soften stool so I m back below .01. Told medical oncologist that I eat lots of MUSHROOMS too to keep PSA down. Also getting Zytiga/Trelstar butt shot every 3 months. Thanks for your long response to me. I m on contact with Mayo and Dr. Eugene quon don’t take patients unless their over 1.5 PSA. My records are on Epic- they can see my test results all over America. Also had a stent put in my heart too a hear and a half ago- RCA 95% plugged. On blood thinners. Can walk the treadmill (mile) in 18.00 min. Hope you enjoyed all this BS reading. Take care. Bruce

@ecurb
Bruce, don't consider BS at all. Sounds like you keep up to date on PSA information and treatments. I think I see above you put a ? for UFPTI.

In Jacksonville Florida UFPTI is University of Florida Proton Therapy Institute. It is a huge modern treatment facility using proton radiaton. Has 5 different gantries and all have been udated to latest technology. They have been doing proton radiation treatments since 2006 and paitents from every state and I think over 50 countries have come there. I went there because Mayo Jacksonville (I live close to) does not have proton radiation just photon but are building a new cancer center that will have proton.

That EPIC system is great for doctors to be able to see records and tests.
Take care and good luck!

Thanks for the update on that acronym. I don’t even know what type RT I received last year. I eat mushrooms 4-5x/ week to help keep my PSA down. Lol. Let ya go for now. We can talk later as this disease keeps people chatting, comparing notes daily. Bruce

Slightly different question. What is definition of a 'cure'? And what for that matter is zero PSA? It used to be < 0.1. Now there are people who has < 0.003. Who is right?
Dont mind me. I am just another layman trying to make some sense of the whole thing.

I think different treatment centers use different levels of non detectable score. What my PCP said was it gets to a point where it is considered non detectable and I was told that number was .02.

PSA numbers when you have had a RP are worrisome as they (per my PCP) should be at the undectable level as you don't have a prostrate. Those who kept prostrate you will most likely have PSA levels that still go up and down based in irritations, activity, and hopefully not returning cancer. It is why the follow up PSA checks are so important.

I am not sure of definiton of cure. When you have cancer the possibilities of it recurring are much higher than an non cancer diagnosis. So my definition is what my oncologist/radiologist and PCP advises if should worry or not worry about a level or sign.

I don't believe you can use the term "cure" in reference to a specific PSA level. Cancer may still be lurking for years with an undetectable PSA, even ultra sensitive PSA. Different oncologists use different time frames to use the word "cure" in reference to various cancers. Five years, 10 ? Who really knows? In my medical career I have seen various cancers return after as much as a 20 year remission. With prostate cancer if it was high grade (Gleason 8-10) you are never off the hook.