Anyone had the same? PC - Micrometastatic recurrence | PSMA PET neg

.09 is still considered undetectable, Though it may not be for much longer. The big question is what is the doubling rate. The medical community considers < .1 To be undetectable, you are still there.

If you had IMRT, that usually means the prostate bed was radiated. I had a prostatectomy followed 3 1/2 years later by IMRT radiation because the cancer came back. My PSA hit .2. That radiation is considered the lifetime radiation for that area of the body. My cancer came back again, 2 1/2 years later, and I went on Lupron full time. I do have BRCA2 and that is one reason it keeps coming back.

If you truly had weeks of IMRT radiation after your prostate cancer surgery then you cannot do it again.. At this point, you can use SBRT to zap metastasis that show up. I had that done to one of them on my spine. Seems to have worked, And it works quite well for a lot of people I know.

Do get genetic testing to find out if it could be a factor. Does anybody else in your family have cancer? You can get it here for free, takes 2 to 3 weeks to get the results and a genetic counselor will call you. They will send you a kit that you return in the mail. You have to live in the United States for this.

Prostatecancerpromise.org

2 1/2 years after I started Lupron, my cancer came back again (became castrate resistant) and I was put on abiraterone. That drug gave me high blood pressure for which I have to take three pills twice a day even now, six years later. It gave me four Afib events. It made my hot flashes a lot worse. But it kept my PSA low for 2 1/2 years, though it was only undetectable one month. It is recommended as the first ARPI drug to go to. After 2 1/2 years, I switched to Nubeqa I have been undetectable for the last 24 months. Abiraterone Was not a lot of fun but gave me 2 1/2 years. I know people that were on it for five years and it worked well for them.

@jeffmarc
Thank you, Jeff - much appreciated and thanks for sharing some of your story. Yes, my Dr has requested a new germline test to see what the biology of my PC is. We don't know the doubling rate yet, as my PSA just began elevating about a month ago (after 1.5 years of undetectable).
We did radiation to the prostate fossa after detecting SV invasion after RP. I am constantly wondering if we should have done RT to the whole pelvis with salvage RT and IF that would have benefitted me...but its too late now. I'm going to see what the Drs at MSK say about RT to entire pelvis/lymph nodes or if the SBRT. I believe IMRT can still be done (outside of the P fossa that was previously radiated).
The problem is, its now micrometastatic and not showing up on PET...so it could be anywhere. RO strongly believes it is small nodal.
I want the most aggressive treatment plan now to give me the best shot of long-term remission.

@jeffmarc HAPPY THANKSGIVING Jeff, we’re still here. Just a comment: nines/darolutamide works for you , but it’s contra indicated for those with HEART ISSUES. I had a stent put in the RCA-95% blockage. So I m on eliquis/metopropolol. Also AMIODARONE-as an A fib prophlactic3x/week. Take care. Bruce/ecurb.

@darrenh05 Hey Darren, I used Dr Andrew Barsky at Sloan in Commack. He’s young and damned smart too.
The RO’s in NYC are no slouches either so you are in good hands.
I just had SRT and the new protocol is prostate bed PLUS pelvic lymph nodes since 30% of all recurrence comes from the nodes.
Not entirely sure if they can target the nodes only, without hitting the bed a second time; maybe (MAYBE!) with proton but probably not with photon.
I would want exactly what you want: aggressive treatment now…but it is tricky at this point. Number one, You really don’t know where the cancer is; secondly, ADT will probably stop proliferation and suppress your PSA but for how long?
Or, you can wait (which is agonizing as we all know) for the cancer to grow until it becomes visible on PSMA and then hit it with SBRT as Jeff suggested…but what about possible micrometastases that PSMA can’t detect??
Yes, I have more questions than answers and I totally empathize with your situation. My suggestion, FWIW, is to get at least two opinions. All RO’s are different in their approach, the way they think and their treatments.
My first RO at Sloan was an older, set in his ways kind of guy who was going at his comfort level of treatment no matter what…success or failure didn’t seem to matter cause this is the way I do it dammit!
But thank goodness he left Sloan before my treatment began and I was assigned to Dr Barsky. Less treatments, different ADT, and a whole lot nicer human being; and being young he is really up on the latest research and in fact, has co-authored various studies as well. I would certainly consult with him if you need a second opinion. Same hospital, but different person…Best,
Phil

As Jeff pointed out, they need to determine the velocity. I was treated once I hit .2 with a negative PSMA PET. PSMA is usually negative at your level and a and I would personally view it a waste of time for myself. I know mine will want to do a psma pet if I BCR again at .2 if for no other reason than they recently purchased a PET scan machine and will want to generate billing. Second opinion GU at a respected CCC suggested wait until 2.0 on my PSA and they will be able to find it and get it. In my area the monopoly private practice loves to over treat for revenue. I don't take this lightly as I was Gleason 9, Grade 5, stage 3a, T2, 10% 1 pin Crib. and if I BRC again will have some decisions to make. Currently undetectable post tx.

@ecurb
I am on metoprolol, Diltiazem and Losartan twice daily. Have had multiple Afib Events one landed me in the hospital for four days. I am on pradaxa for a blood thinner.

When I had surgery about a month ago, some doctors were worried about my being on Nubeqa, My oncologist told me and them, don’t worry about it it’s not a problem. She is really knowledgeable about just about everything related to prostate cancer and would not have me risk it if there was a problem.

I have never had a stent put in, Arteries are blocked, but not too bad.

Just another point of view.

@jeffmarc thanks for that info Jeff. I ll have to research two of the heart drugs your on. Last May I passed the Echo/stress test of my ticker with no ischemia found on a real treadmill. My other s in my heart were 65% plugged. But I still had no issues with the testing of cardiovascular system. Did my drugs make the blockages go away. I don’t think so. Had no symptoms during this testing.