Dazed and Confused

Jeff, I really appreciate you taking the time to share this graph and the articles. They highlight concerns that are very real for those of us with IDC and cribriform features. Seeing the numbers laid out visually makes the risks you’ve been pointing to much clearer, and I’m grateful you’ve brought that perspective here.

At the same time, I remind myself that the graph comes from retrospective studies — looking back at patients rather than assigning treatment randomly. That makes the results valuable as a warning signal, but also subject to confounding factors (for example, salvage radiation was often given much later in the past, when PSA was already higher). That difference alone could explain much of the gap. This is why the randomized controlled trials are so important: when men were randomly assigned to adjuvant or early salvage radiation, outcomes were the same. The limitation, of course, is that those trials didn’t single out men with IDC or cribriform disease, so we don’t know if our subgroup behaves differently.

To me, this doesn’t change the path I’m on, but it does reinforce your main point: with our biology, we need to keep the leash very short. That means ultrasensitive PSA every 3 months, being ready to act on a confirmed rise, and making sure tools like Decipher and advanced imaging are in the discussion with our doctors. I’ll definitely revisit some of this with my Mayo team at my next follow-up.

Thanks again for putting this information out there. It helps me think through the trade-offs more clearly, and I hope we can keep this conversation going.

Yes, please keep us posted 🙏.

I found that article couple of days ago and am still trying to come to terms with pathology findings after my husband's RARP .

Wishing you all the best and a good and productive meeting with your doctor with more answers and a clear direction 🍀

I am 76 y/o 11 years left, obese. G9 80% core in one peripheral zone lesion DNI only, two others 5, 15% core G7 in another zone. Decipher and ArterraAI INTERMEDIATE risk level and no need for abiraterone. Orgovyx for 5 months. preparing for RT. Size of gland 120 before. Presumably 35% less ( 77% ) now. Before ADT PSA 6.0 (PSAV 0.05) MRI & PPSMA PET CT scan negative for any outside of gland. 1st lesion SUV 15, the other 2 SUV about 3, 4,

ArterraAI, (if NCCN protocol) 10 year risk of DM (distal mets) 3%, There is 1.4% 10 year risk of PCSM (prostate specific cancer mortality), this 94% better than everyone else on this reference scale.

Question ONE:
Does recommended "preventive" pelvic lymph node (PLN) radiation added to RT make any sense?

Pre widespread use of MRI, certainly pre PSMA PET CT scans G9 discovered post RAPR concluded that the chance of extra glandular disease (mets) would be about 20% over 5 years, or 80% NO METS. [ BTW If mets 60% one pelvic lymph node, =12% 1/8th, 20% 2 pelvic lymph nodes =4% 1/25 overall,. Spot SBRT would reset the cure clock for the 80% of the escaped cancer cells. Add that 16% (80% of 20 %) of initial non mets 80 we are approaching 96% This is in the context that "prevented" RT only benefitted biochemical resistance (BCR) in those with a starting PSA >40. [OS, PCSM, and DM were unaffected]

Question TWO:
It appears that 6 months of short term (ST-ADT [STADT]) is about 82% as effective as the 88% who have long term ADT (LT-ADT, [LTADT]). High dose (gy)?

If you are having IMRT you might as well treat the nodes as well. NO scan can pick up a single cell or clump of cells which may be outside the gland.
I mean, you’re already on the table - there’s no extra treatment days involved and you really won’t notice any difference. Just my opinion, you really should ask your RO - and another one to be sure.

You are a Gleeson nine which is a very aggressive prostate cancer. It appears your doctors are treating it like it’s not aggressive. Any other Gleason numbers are irrelevant, the highest number is your Gleason .

It would be useful to know exactly what the decipher score was.

Radiating anything that does not have cancer Has to be done carefully. That is what salvage radiation does as well as initial RT.. It would prevent you from radiating the lymph nodes again if Cancer appears. They frequently do radiate some lymph nodes, Discuss this with the doctors.

The NCCN standard for ADT is 24 months with a Gleason nine. The latest ASCO guidelines say that you should also have an ARSI (Zytiga or a lutamide) If you want the best long-term survival.

Combinations of ADT with ARSI and/or DOC (docetaxel have been a consensus guideline recommendation from ASCO and the American Urological Association since 2018 (2020 and 2023 for triplet combinations). These guidelines are based on phase III clinical trial findings demonstrating improved clinical outcomes, including progression-free survival and overall survival, with ADT combination therapy compared with ADT alone.

There is no cure clock. You can get remission you never can get a cure with Gleason nine. I know people with Gleason nine that have come back 30 years and 20 years later with recurrence.

Are you going to a center of excellence for treatment? It sounds like you really need to get a second opinion from a center of excellence or a Genito Urinary Oncologist. With a Gleason nine you need to be very careful.

Are you sure the biopsy didn’t find any of these things? Intraductal, cribriform, Seminal vesicle invasion or ECE. If any of these were found it makes your cancer much more aggressive

13 August. RARP
Gleason 7(3+4) Grade 2
Lymph Nodes removed snd clear
Margins clear
pT3a + IDC-P
Waiting for Decipher and new PSA (6-8 weeks).

I don’t like waiting around but I guess things need to heal and takes time for PSA to reset after surgery.

I’m considering going to a center of excellence (MD Anderson) but I’m VA so probably not covered.

Frustrating not knowing if I’m getting the best care available

Jeff,
Do you think it’s worth $730 for a second opinion at City Of Hope Irvine to go over treatments thus far and possible further treatments? Kaiser has me lined up for a new pet scan on Thursday and Zytiga as soon as I’m ready. I have an appointment on 9/5 with COH. If you don’t remember I’m 3tb and undetectable.
Opinions welcome.
Thanks!

You might want to check with Dr. Mark Scholz In Marina del Rey. I know people that have been going to Kaiser in the Bay Area and also UCSF, that have gone to him for a second opinion. He doesn’t charge as much as City of Hope, but then he’s not a center like COH and offer As many options. He is one of the heads of PCRI. You could check out his videos on YouTube if you’re not familiar with him.

The thing is, if you are on Medicare And Kaiser is your Medicare advantage center, you’re not going to switch to city of Hope unless you change your medical plan. So you’re just looking for a second opinion in that case.

Are you in the Bay Area or Sacramento? If so, Kaiser has a Genito Urinary Oncologist Who could really benefit you. Dr. Andrea Harzstark is pretty incredible. She was trained at UCSF and I have never found a question she couldn’t answer. I’ve been mentoring a guy who had some serious problems after Zytiga. He spoke to her last week and he called me and said she was fantastic. She made appointments for him that nobody else had even considered and he now feels he has a chance of getting back to normal. I had the luck of her becoming my oncologist eight years ago when I went on Lupron. You can ask your doctor to get a second opinion from her and you could even switch to her as your oncologist.

if you are in Kaiser in LA then it won’t work. She is the only GU oncologist in the Kaiser system.

After an RARP Your PSA should drop to undetectable. The problem is apparently your cancer has spread outside your prostate capsule. The IDC-P is a big problem. I’m surprised they didn’t change your Gleason score to at least a 4+3.

If you want to know how you can get care at other places, you should go to ancan.org and Attend one of their veterans groups. It meets twice a month. The guy running at knows everything about how to get Around the VA and get treatment from other places. They’ve been doing this for many years and are extremely experienced. The leaders are a colonel and a general (retired).

Now for more information about IDC-P.

There’s a study about it here
https://www.mdpi.com/2072-6694/16/9/1650#:~:text=Emerging%20evidence%20underscores%20the%20association,risk%20stratification%20and%20therapeutic%20interventions
From that study
Emerging evidence underscores the association of IDC-P with aggressive disease and poor clinical outcomes across various PCa stages. However, standardized management guidelines for IDC-P are lacking. Recent studies suggest considering adjuvant and neoadjuvant therapies in specific patient cohorts to improve outcomes and tailor treatment strategies based on the IDC-P status. However, the current level of evidence regarding this is low. Moving forward, a deeper understanding of the pathogenesis of IDC-P and its interaction with conventional PCa subtypes is crucial for refining risk stratification and therapeutic interventions.

Going to a center of excellence may be your best chance at how long progression free survival.

Thanks Jeff, this too is very helpful