Went in T2a, came out T3a — anyone else blindsided by post-op path?

Well, you sure have come up with a mouthful of issues. This sure shows a biopsy can’t find everything, Can’t find anything sometimes it seems.

I don’t know if you noticed us talking about this earlier, but when somebody has cribriform and intraductal There doesn’t seem to be any treatment that really works fully. I’ve been searching all over for this, this year, and have not been able to find a solution to tell people. Nonfocal extraprostatic extension, and multifocal positive margins shows that the cancer is outside the capsule in multiple sites.

Over the last five years, I’ve heard from dozens of people that have had surgery and none of them had the multiplicity of issues you have.

This sure sounds like a case where adjunct radiation would make sense, Not waiting for salvage radiation.

I would think that, even though you are a 4+3 a Genito Urinary Oncologist Would want you on ADT and an ARPI as soon as possible. And that’s the situation you are in you need to find yourself a top notch GU Oncologist To guide your treatment. Having both cribriform and intraductal Would put a five in your Gleason score according to UCSF.

If I knew where you lived I Might be able to give you the names of some doctors in that area. This is not something you can just let go. This needs to be addressed immediately by the right oncologist, and not just a medical oncologist.

Have you had hereditary, genetic testing?

Did you get a PSMA PET scan? That is something you really need to get immediately to find out if that cancer has spread outside the prostate bed. Salvage radiation treats the prostate bed, not tumors, found elsewhere.

You definitely need some expert advice. Tomorrow at 5 PM Pacific time Ancan.Org has their Weekly advanced prostate cancer meeting. They’ve been helping prostate cancer patients for 15 years to resolve treatment of prostate cancer. If you got there 10 minutes early, they would talk with you first and give you advice. You need to install GoTo meeting in order to attend these conferences. You put in answercancer for the name of the meeting, to join.

My husband went from T2 with 4+3 unfavorable to 4+5 , T3a after they examined the whole gland. He had "iffy" margin on one tiny spot where 3+3 was present and unifocal EPE that had negative margin but it pushed him into T3a category.
His tumor burden was very small, I forgot the %, but it was really one single small spot with cribriform and IDC. His post op uPSA was 0.014 and all looked promising but now 7 mos post op his uPSA rose to 0.026 . It is still early to know what is going on but I am not holding my breath : (.

Unfortunately with cribriform and IDC there is no telling what is in the future. Those are very aggressive features and one has to be extra vigilant with follow-ups . We do uPSA every month. Cribriform and IDC can cause shorter progression free periods BUT everybody is different and I am sure that there are patients with all those bad findings who have 10 or more BCR free years in spite of it all , and I am wishing you with all my heart to be one of those < 3.

@jeffmarc super helpful information. I will track down the ongoing cribriform + intraductal conversation. Had not seen it. Thanks for putting it on the radar. I'll talk to the team about ADT/ ARPI. My case is coming up before the tumor board on Thursday and then I'll have a conversation with the oncologist Friday. I am in the UC system, SoCal.

I had the PSMA PET scan in December and it came back clean, so I suppose nothing too large is out lurking beyond the prostate bed. Although, it's been a fun game of, "you never really know what you think you know."

@surftohealth88 Thanks for the note and well wishes. I'm going to be aggressive in my vigilance. Like for like. Rooting for you and your husband. We'll get there, even if we have to take the scenic route. Game on.

I had RARP last June at age 50, Prior to surgery, I ran 5-6 days per week and lifted weights 2-3 times per week. Excellent overall health, minus cancer, of course!

Pre-Op: T1C based on biopsy (6.68 PSA), 3+4 in 6/12 cores, 0.56 decipher, PSMA negative for bone/lymph metastasis, no BRCA1/2 mutations, not likely to react negatively to short or long course radiation (can't remember test name).

Post-Op: T3b, 3+4, EPE shown in MRI day the before surgery, SVI, large cribriform present (< 10%), 15 lymph nodes negative, negative surgical margins, IDC is iffy - one section of the report said "no" but another section said "Intraductal carcinoma: Atypical intraductal proliferation, suspicious."

I was definitely blindsided by post-op pathology, however my recovery before and after receiving the report has been incredibly smooth. I started walking the night of surgery, had no incontinence issues following catheter removal, was back to running at three weeks, and began light workouts at three months. I was extra cautious with weights because I did NOT want a hernia but was back to pre-op workout levels by 6-8 months. I've had three post-op PSA tests and so far it's been undetectable. I'll continue getting tested every three months for now.

My husband was in the same boat in 2021. Went in 2Ta but ended up with 3Tb after surgery: very tiny trace of cancerous cells in the right seminal vesicle (about 0.1 mm). We got three second-opinion after surgery. All specialists said that the cells were so small that they weren't picked up on the scan. Since my husband was only 47 at the time, all specialists we saw agreed to do "wait-and-see," which his PSA had been undetectable for almost 5 years. He currently has recurrence with one PSMA-positive lymph node on right external iliac. He's now on Orgovyx and will get radiation as soon as we get the pre-authorization on the procedure.

@prettypass2000 appreciate the commentary. While it might not seem it, it does provide some comfort. Still, sorry you are going through this. Sounds like a plan is in the works. Onward.

@psychometric blindsided brothers, indeed. Still path provides comfort and hope. I hope to be on a similar trajectory--starting with catheter removal later today. Surgery went as well as I could expect. Been walking each day, more and more. Can't wait to get back to trail running. Hope to be out there with you soon.

Wow...so many relatively encouraging signs at the time of your biopsy report. Agree - I would not have expected the news that your pathology report delivered.

My PSA was 8.1. I was Gleason 4+3=7 after my biopsy with 9 of 15 cores positive. Like you I also had a clean PSMA PET scan. I opted for SBRT rather than surgery because my MRI indicated PCa along the perimeter of my prostate (meaning I was concerned with possible microscopic extraprostatic extension). Makes me wonder what my pathology results might have been if I had selected the surgery route.

Well...I'm cheering for you buddy.

@runvertr2r2r Thank you! Sending you best wishes. I am glad my husband story provide some comfort. I wake up every day, feeling thankful to see a new day. Some days can be rough, but that too shall pass. 🙂 I must admit that I didn't have this way of thinking when we first dealt with cancer. I was a big mess; however, time and researching on all aspects of PC really helps me change my perspectives.

We just submitted all of the required paperwork to our clinical case manager, whom the insurance company assigned to help us navigating through the recurrence (she helped us 5 years ago too). I hope it'll be approved quickly so that we could schedule the appointment for planning soon.