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

Posted by bikeman1 @bikeman1, 6 hours 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.

lag | @lag | 6 hours ago

My husband has been a patient of Dr.Kwon since his first recurrence in 2011. In that time, Dr. Kwon has always insisted that my husband have imaging before any treatment decisions or the start of treatment. He also requires a wait of three months after any treatment for imaging to occur. We are scheduled to see Dr, Kwon soon, on May 6, with imaging the day before--three months after my husband's last radiation treatment. As you can see, the doctor is following that protocol to this day.

I would also caution you that Dr.Kwon does not answer email, even from current patients. The members of his team monitor incoming email messages from patients and answer the messages, after consulting with Dr. Kwon if necessary. His team is terrific--but I don't know if they will answer you if you are not a current patient.

Hope this helps.

Jeff Marchi | @jeffmarc | 3 hours ago

Yours is the case where aggressive treatment may be the best treatment. You shouldn’t be seeing a doctor like Doctor Kwon, You have a very serious case with both Cribriform and IDC. You need to be monitored for the rest of your life so you can get the best treatment. I don’t know if you’ve done any searches about treatments for IDC plus Cribriform, I’ve done some research into treatments for it and there are none that are really showing positive long-term results.

This was discussed at one of the Online ancan.org Advanced prostate cancer meetings, a couple of months ago. There was a lot of frustration by the guys leading the meetings about the fact that they could not recommend any specific treatment they knew would work. There are always a few few doctors in the meetings. They were not able to come up with anything either..

You also have EPE which says that it has likely spread outside the prostate.

Dr. Kwon Was asked how prostate cancer spreads is it like a pebble being dropped into a body of water where the waves spread out and would prostate cancer would propagate the same way. He said no, it is a stochastic spread of prostate cancer that goes everywhere (Like dormant cells spreading before the cancer is even detected).

Dorman cells spread out throughout your body before they even have detected that you have prostate cancer. They hide in a way they cannot be seen by any known diagnostics today. If you have stress on your body, they can pop up and cause your cancer to reappear.

Dr. Kwon’s explanation about how cancer spreads throughout the body makes it even more likely that your EPE has allowed cells to get away from the prostate.

While a normal case of prostate cancer, that’s not too aggressive, can put off salvage radiation to see if metastasis show up. I’m not sure that’s really applicable in your case. Speak to some doctors about this, but not urologists maybe radiation oncologists but you probably need a GU oncologist to work with you?.

surftohealth88 | @surftohealth88 | 2 hours ago

My husband has IDC and no BRAC 2 or any other inherited mutations. To be honest this is the first time I am hearing of this connection.
Also - there are 2 types of IDC with different aggressiveness and nobody is looking into that - one type has loose cribriform around IDC and the other more dangerous had a dense cribriform tissue.

All in all, any study I found suggests early salvage for high risk PC regardless of negative PSMA so my husband and me will stick with that recommendation.

I never found a single study that even looked into "wait and see" in this stage of cancer treatment - if you have any links could you please attach them here ? Thanks so much in advance . 🌺