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Low, But Rising PSA--Wait for Imaging or Act Now?

Posted by bikeman1 @bikeman1, 4 days ago

I watched the entire PCRI conference on 4/25 (https://pcri.org), with two well-known experts: Dr. Epstein (Pathology) and Dr. Kwon (Relapse). Both were very relevant to my situation: 72 years old; RALP on 9/22/25; PSA on 12/30: < .01 (standard); PSA on 4/15: 0.171 (ultra sensitive) (next test on 5/4 to determine trend). My "bad news" and "good news" data are below. I have appointments at Johns Hopkins and MSK in NYC to get their recommendations on next steps.
Dr. Epstein emphasized the greater likelihood of BCR and worse outcomes if Cribriform is present, as this group had discussed before. But he emphasized Intraductal Carcinoma (IDC) as even more important (and flat out said a patient should get a BRAC2 test if he has IDC, which I am scheduling).
Dr. Kwon made a strong case for waiting for imaging results before moving ahead with salvage RT and/or hormone therapy. He argued that in relapse cases prostate cancer frequently does not start in the prostate/pelvic area and spread from there but it can be anywhere in your body and shooting radiation “blind” to the pelvic area carries significant risks. He also cited 3 studies showing better outcomes by waiting for imaging results before proceeding (at 3:54:10). Subsequent Q and A near the end with Dr. Scholz emphasized the value of MR imaging in these situations and how under-utilized it is.
I have emailed Dr Kwon to ask if his general approach still applies to someone like me with a lot of high risk factors (see below), but haven't heard back yet. As this group has discussed, studies show better outcomes in high risk cases by starting treatment with lower PSAs (and thus not waiting for cancer growth large enough to be seen on imaging). I looked at 2 of the 3 studies and didnt see discussion of this issue. I will let you know if I get a response.

"Bad News":
GL 7 (4+3)
IDC
Cribriform
EPE
.89 Decipher score

"Good News":
Clean margins, lymph nodes, seminal vesicles during surgery
Clean CPMSA PET scan on 8/25/25 (pre-surgery)

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for edinmaryland
edinmaryland | @edinmaryland | 15 hours ago
In reply to @brucemobile "@edinmaryland I had the RP August of 2025, after the surgery my Urologist sent me to..." + (show)
Profile picture for brucemobile @brucemobile

@edinmaryland I had the RP August of 2025, after the surgery my Urologist sent me to an RO for a follow up if there was a need for salvage radiation. What he told me is if my PSA got to .1 we would be making plans to treat with radiation. If my PSA went to .2 we would begin treatment. The reason for using PSA as a baseline for treatment was that a PetScan would not see it till it was far beyond when treatment started. Just mine and my doctor’s 2 cents here.

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@brucemobile
Thanks so much Bruce

I am really in the data collection phase and will see a RO at Hopkins in three to four week. All this information is super helpful. She already has me set up for some labs but I do not know what they might be yet, She was recommended by others on this list and luckily I will be able to see her

Does radiation after RARP connect with more incontinence or regression?

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edinmaryland | @edinmaryland | 4 hours ago
In reply to @bikeman1 "I was having a hard time reconciling the two conflicting sets of studies: one shows waiting..." + (show)
Profile picture for bikeman1 @bikeman1

I was having a hard time reconciling the two conflicting sets of studies: one shows waiting is better, the other shows starting treatment sooner is better (and sooner than hitting .025 is best).
I think @dhasper made a really good point--what works from a public health perspective, may not work for me, with my particular characteristics. I couldn't find this when I looked at the "wait" studies, but I bet the people studied were mostly of "average" risk profiles--not people like me and @dhasper with higher risk profiles. And @suftohealth88 put it in better perspective: 2/3 of the men DID benefit from earlier intervention. I haven't yet consulted with my wife to get her perspective, but I am leaning strongly to starting soon. I also am lining up an appointment with Dr. Paller (thank you Jeff).
You all are great!

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@bikeman1
I am seeing Dr Paller as well

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begreat99 | @begreat99 | 2 hours ago
In reply to @dhasper "I am in the exact same situation and decided to act now. The question certainly isn't..." + (show)
Profile picture for dhasper @dhasper

I am in the exact same situation and decided to act now. The question certainly isn't settled and Mayo is 2 months into a long term trial to determine whether waiting to see the cancer is as effective as early treatment with radiation and adt as indicated. So when you recur they present this option and ask if you want to postpone treatment. As you, I have idc , cribiform, early recurrence and a doubling time of three to five months. I personally do not feel comfortable waiting and am proceeding immediately with treatment.

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@dhasper
Agree. Same here. Similar PC diagnosis. 10 months Post RP PSA rose to .2. PSMA PET/CT scan showed 1 lesion in pelvis. Biopsy confirmed cancer. Immediate SBRT in pelvis and started Orgovyx and Nubequa. PSA now undectable and side effects very manageable. Just tired a lot and weak. Still shot 82 last week - just need to adjust swing tempo! lol. Onward.

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gtin723 | @gtin723 | 1 hour ago

I kind of just going through this now, 5 yrs after prostectomy undetectable, then PSA starting to rise and at .5 and PSMA PET/CT showed pelvic leasion small and possible left hip, but may have just been bone growth area absorbing tracer. Treated with radiation and PSA undetectable for 22 months with ADT & Bical, then started rising again .11, then .23, then the 4wks later .47 , so rapidly rising doubling every 4 weeks.

Medical Oncologist willing to wait to .5 to see if PSMA PET/CT with Pylarify could pick up anything. Had the scan when PSA was .47 and it showed nothing at all, the prior lesions were totally gone so both my Radiation Oncologist and 2 Medical Oncologist said start treatment with xzanti and continue ADT.

These are some very smart physicians, Harvard undergrad, Harvard Medical School, Professor of Medicine at Harvard, Dana Farber Cancer Research, another one Penn Medical and Yale so I have to listen to what they are telling me and it is a great way to stop worrying about every PSA tic or if I am doing the right thing, that is the biggest challenge.

So my advise make sure you take the time to assemble a top notch group of physicians that you can believe in and focus on fighting this disease and reduce some of the anxiety that we all have.

Reading many post some patients really don't like or trust their doctors, which is not the best situation IMO, get a good team and live your life to the fullest today none us know what tomorrow will bring.

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