Dazed and Confused

Posted by s00nerzfan @s00nerzfan, 10 hours ago

I met with my surgeon 8 days after prostatectomy for catheter removal. Discussed pathology report. Margins clear, seminal vesicles clear, lymph nodes clear. Gleason 7 3+4 (Grade 2). Also mentioned extra prostatic tumor invasion and intra ductal carcinoma but didn’t elaborate. The surgeon ordered a Decipher test (6weeks) and said he would see me in 90 days to check PSA and review Decipher results. Once we got home we took a closer look at the pathology report and researched the pathology Stage pT3a and intra-ductal carcinoma. We’re finding this to be very alarming and warrants an aggressive treatment strategy. We’re at a loss as to why they recommended a 90 follow up vs an urgent “all hands on deck” approach immediately upon receipt of Decipher results. Am I over thinking this? What am I missing?

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

I had surgery two weeks ago yesterday at Mayo and am the same as you except t3A with cribriform, IDC and Extra Capsular extension. I am on a Q3 surveillance plan just like you. I also have questions but I don't know if there is really anything else to do at his time. You have a shot at a total cure and they will monitor by PSA and be ready to go with salvage radiation and ADT, if deemed necessary. I am using this time to focus on a diet that help with preventing recurrence, but especially focusing on exercise to be in excellent shape for further treatment if needed.

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Your doctor is not taking the major issues you have into account.

A recent article discusses the problems with having intraductal (IDC-P)

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.

Here’s a link to the full article
https://www.mdpi.com/2072-6694/16/9/1650#:~:text=Emerging%20evidence%20underscores%20the%20association,risk%20stratification%20and%20therapeutic%20interventions
Extraprostatic tumor invasion, also known as extraprostatic extension (EPE), is the presence of prostate cancer beyond the confines of the prostate gland's outer capsule. This cancerous growth often extends into the surrounding periprostatic fat and surrounding tissues. EPE is a significant indicator of locally advanced prostate cancer, a poor prognostic factor associated with a higher risk of disease progression and recurrence after treatment, and is classified as a pT3a stage in the TNM cancer staging system

You may want to get adjunct radiation as soon as possible. Your decipher score is really important to find out how much of a difference it can make. Here is a graph that shows how much more Metastasis you can have if you have a decipher score of .4 or more, and you wait for salvage radiation. Adjunct Radiation is one good answer to this problem.

Unfortunately, I don’t have a link to the article that I got this graph from. If I find it, I will add it to a message.

Found the link
https://www.urotoday.com/conference-highlights/apccc-2024/151546-apccc-2024-debate-how-to-best-manage-a-fit-patient-with-high-risk-localised-and-locally-advanced-prostate-cancer-how-to-select-patients-for-adjuvant-therapy-after-radical-prostatectomy-and-how-to-treat-them.html?tmpl=component&print=1

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Thanks for the information this is helpful. It's difficult to get local urology team to have the required sense of urgency. They told me 6 weeks for the Decipher results but no mention of need for radiation or ADT yet. putting off next contact until December 11th seemed fine until I realized how serious the pT3a and the IDC-P are

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Yes, The thanks Jeff, I am in same situation and wondering if the standard guidelines meet the situation. Additionally, my PSA prior to surgery was 2.5 so I have the additional the surveillance PSA limit should be modified.

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Hi, I thought you would both find this interesting. I ran our forum board discussion and Jeff's links through ChatGPT. "Thanks for sharing the whole thread, Dave. Here’s a cohesive response pulling together the Mayo forum discussion, Jeff’s points, and the MDPI/urotoday references into one balanced interpretation:

1. What Jeff is flagging

IDC-P and cribriform: Emerging evidence links these to aggressive disease and poor outcomes. The MDPI review you linked makes that clear, but also admits the evidence base for “what to do differently” is still weak. There’s interest in adjuvant or intensified therapy, but this is not standardized or backed by large randomized trials yet .

Extraprostatic extension (pT3a): Another adverse factor, which by itself increases recurrence risk.

Decipher: Jeff is right that genomic classifiers can stratify risk further; in some analyses, a Decipher ≥0.4 correlates with higher metastasis risk if salvage is delayed .

2. Why your Mayo team (and most guidelines) still favor surveillance

Level 1 evidence: Three major RCTs (RADICALS-RT, GETUG-AFU 17, RAVES) compared adjuvant RT vs early salvage RT. Result: no survival advantage to immediate adjuvant, but more toxicity.

Guidelines (AUA/ASTRO/NCCN, EAU): Strong consensus is not to give adjuvant RT routinely, even in adverse pathology, but instead to monitor closely with ultrasensitive PSA and deliver salvage RT early if recurrence appears.

IDC-P/cribriform weren’t stratified in those RCTs. So we know these variants are bad actors, but we don’t yet have proof that treating before PSA rise changes survival.

3. Where nuance is needed (your concern is valid)

For men like you and s00nerzfan, it’s natural to feel the “standard cookie-cutter” plan may underserve aggressive biology. Jeff’s concern is rooted in real biology, but the evidence gap makes most top centers reluctant to expose every patient to RT up front.

A reasonable “middle ground” is exactly what Mayo has you on:

q3-month ultrasensitive PSA (much tighter than community follow-up).

Return visit >0.1 ng/mL — already a lower threshold than traditional 0.2.

Readiness to escalate with salvage RT ± ADT if PSA changes, with imaging layered in.

4. The role of Decipher

For low/intermediate risk, Decipher helps decide if you can avoid treatment.

In high-risk, its role is less about “if you need treatment” (you likely do if recurrence happens) and more about how soon and how intense salvage should be.

If your Decipher is high (>0.4–0.6), Mayo may shorten the leash further (e.g., act at 0.1 confirmed, add ADT with salvage RT).

5. Bottom line for you

You’re not missing the boat by not doing adjuvant therapy now. Your plan matches best evidence: heal, monitor closely, strike early if PSA rises.

IDC-P and cribriform do justify heightened vigilance — and Mayo has already lowered your PSA trigger compared to standard.

Future options: If salvage is ever needed and standard PSMA PET under-performs, you’ve got alternatives in reserve (Axumin, C-11 choline, pelvic MRI, investigational Zr-89 PSMA).

Your strategy of recovery (diet, exercise, strength) is not just quality-of-life; it’s medically smart. It makes you stronger for whatever next step may come.

👉 If you want, I can turn this into a forum reply draft that validates Jeff’s points but also reassures folks (like s00nerzfan) that the Mayo/early salvage approach is evidence-based, not complacency. Would you like me to sketch that reply in your “voice”?

REPLY
Profile picture for dhasper @dhasper

Hi, I thought you would both find this interesting. I ran our forum board discussion and Jeff's links through ChatGPT. "Thanks for sharing the whole thread, Dave. Here’s a cohesive response pulling together the Mayo forum discussion, Jeff’s points, and the MDPI/urotoday references into one balanced interpretation:

1. What Jeff is flagging

IDC-P and cribriform: Emerging evidence links these to aggressive disease and poor outcomes. The MDPI review you linked makes that clear, but also admits the evidence base for “what to do differently” is still weak. There’s interest in adjuvant or intensified therapy, but this is not standardized or backed by large randomized trials yet .

Extraprostatic extension (pT3a): Another adverse factor, which by itself increases recurrence risk.

Decipher: Jeff is right that genomic classifiers can stratify risk further; in some analyses, a Decipher ≥0.4 correlates with higher metastasis risk if salvage is delayed .

2. Why your Mayo team (and most guidelines) still favor surveillance

Level 1 evidence: Three major RCTs (RADICALS-RT, GETUG-AFU 17, RAVES) compared adjuvant RT vs early salvage RT. Result: no survival advantage to immediate adjuvant, but more toxicity.

Guidelines (AUA/ASTRO/NCCN, EAU): Strong consensus is not to give adjuvant RT routinely, even in adverse pathology, but instead to monitor closely with ultrasensitive PSA and deliver salvage RT early if recurrence appears.

IDC-P/cribriform weren’t stratified in those RCTs. So we know these variants are bad actors, but we don’t yet have proof that treating before PSA rise changes survival.

3. Where nuance is needed (your concern is valid)

For men like you and s00nerzfan, it’s natural to feel the “standard cookie-cutter” plan may underserve aggressive biology. Jeff’s concern is rooted in real biology, but the evidence gap makes most top centers reluctant to expose every patient to RT up front.

A reasonable “middle ground” is exactly what Mayo has you on:

q3-month ultrasensitive PSA (much tighter than community follow-up).

Return visit >0.1 ng/mL — already a lower threshold than traditional 0.2.

Readiness to escalate with salvage RT ± ADT if PSA changes, with imaging layered in.

4. The role of Decipher

For low/intermediate risk, Decipher helps decide if you can avoid treatment.

In high-risk, its role is less about “if you need treatment” (you likely do if recurrence happens) and more about how soon and how intense salvage should be.

If your Decipher is high (>0.4–0.6), Mayo may shorten the leash further (e.g., act at 0.1 confirmed, add ADT with salvage RT).

5. Bottom line for you

You’re not missing the boat by not doing adjuvant therapy now. Your plan matches best evidence: heal, monitor closely, strike early if PSA rises.

IDC-P and cribriform do justify heightened vigilance — and Mayo has already lowered your PSA trigger compared to standard.

Future options: If salvage is ever needed and standard PSMA PET under-performs, you’ve got alternatives in reserve (Axumin, C-11 choline, pelvic MRI, investigational Zr-89 PSMA).

Your strategy of recovery (diet, exercise, strength) is not just quality-of-life; it’s medically smart. It makes you stronger for whatever next step may come.

👉 If you want, I can turn this into a forum reply draft that validates Jeff’s points but also reassures folks (like s00nerzfan) that the Mayo/early salvage approach is evidence-based, not complacency. Would you like me to sketch that reply in your “voice”?

Jump to this post

FWIW: I’m a Gleason 4+5=9 pt3b with Cribriform and intraductal. I have asked my medical team for the most aggressive treatment I can have. My prostatectomy was 3 months ago, started Firmagon 2 weeks ago, Xytiga 2 weeks from now, and 39 sessions of radiation later in September. I will be on Firmagon for 3 years (unless I switch to Orgovyx) and Xytiga for 2 years. Once the radiation is done, I am going to try and persuade my MO to put me on Carboplatin or some other Chemo. I am 50 yo and trying to last 5-10 years. Let me know if you have any questions. Thanks!

REPLY
Profile picture for dhasper @dhasper

Hi, I thought you would both find this interesting. I ran our forum board discussion and Jeff's links through ChatGPT. "Thanks for sharing the whole thread, Dave. Here’s a cohesive response pulling together the Mayo forum discussion, Jeff’s points, and the MDPI/urotoday references into one balanced interpretation:

1. What Jeff is flagging

IDC-P and cribriform: Emerging evidence links these to aggressive disease and poor outcomes. The MDPI review you linked makes that clear, but also admits the evidence base for “what to do differently” is still weak. There’s interest in adjuvant or intensified therapy, but this is not standardized or backed by large randomized trials yet .

Extraprostatic extension (pT3a): Another adverse factor, which by itself increases recurrence risk.

Decipher: Jeff is right that genomic classifiers can stratify risk further; in some analyses, a Decipher ≥0.4 correlates with higher metastasis risk if salvage is delayed .

2. Why your Mayo team (and most guidelines) still favor surveillance

Level 1 evidence: Three major RCTs (RADICALS-RT, GETUG-AFU 17, RAVES) compared adjuvant RT vs early salvage RT. Result: no survival advantage to immediate adjuvant, but more toxicity.

Guidelines (AUA/ASTRO/NCCN, EAU): Strong consensus is not to give adjuvant RT routinely, even in adverse pathology, but instead to monitor closely with ultrasensitive PSA and deliver salvage RT early if recurrence appears.

IDC-P/cribriform weren’t stratified in those RCTs. So we know these variants are bad actors, but we don’t yet have proof that treating before PSA rise changes survival.

3. Where nuance is needed (your concern is valid)

For men like you and s00nerzfan, it’s natural to feel the “standard cookie-cutter” plan may underserve aggressive biology. Jeff’s concern is rooted in real biology, but the evidence gap makes most top centers reluctant to expose every patient to RT up front.

A reasonable “middle ground” is exactly what Mayo has you on:

q3-month ultrasensitive PSA (much tighter than community follow-up).

Return visit >0.1 ng/mL — already a lower threshold than traditional 0.2.

Readiness to escalate with salvage RT ± ADT if PSA changes, with imaging layered in.

4. The role of Decipher

For low/intermediate risk, Decipher helps decide if you can avoid treatment.

In high-risk, its role is less about “if you need treatment” (you likely do if recurrence happens) and more about how soon and how intense salvage should be.

If your Decipher is high (>0.4–0.6), Mayo may shorten the leash further (e.g., act at 0.1 confirmed, add ADT with salvage RT).

5. Bottom line for you

You’re not missing the boat by not doing adjuvant therapy now. Your plan matches best evidence: heal, monitor closely, strike early if PSA rises.

IDC-P and cribriform do justify heightened vigilance — and Mayo has already lowered your PSA trigger compared to standard.

Future options: If salvage is ever needed and standard PSMA PET under-performs, you’ve got alternatives in reserve (Axumin, C-11 choline, pelvic MRI, investigational Zr-89 PSMA).

Your strategy of recovery (diet, exercise, strength) is not just quality-of-life; it’s medically smart. It makes you stronger for whatever next step may come.

👉 If you want, I can turn this into a forum reply draft that validates Jeff’s points but also reassures folks (like s00nerzfan) that the Mayo/early salvage approach is evidence-based, not complacency. Would you like me to sketch that reply in your “voice”?

Jump to this post

Thank you. This is very informative and helpful. If only my urologist here in San Antonio would have explained his reasoning. We were still trying to process what they were saying with the good news as well. It wasn’t until I started researching pT3a and IDC-P that the panic set in.

REPLY
Profile picture for dhasper @dhasper

I had surgery two weeks ago yesterday at Mayo and am the same as you except t3A with cribriform, IDC and Extra Capsular extension. I am on a Q3 surveillance plan just like you. I also have questions but I don't know if there is really anything else to do at his time. You have a shot at a total cure and they will monitor by PSA and be ready to go with salvage radiation and ADT, if deemed necessary. I am using this time to focus on a diet that help with preventing recurrence, but especially focusing on exercise to be in excellent shape for further treatment if needed.

Jump to this post

Your focus on exercise and being in your best shape is a very smart plan!

REPLY

This one graph makes one think that waiting for a salvage radiation can be a big mistake. Both of these people that have this Aggressive prostate cancer are almost definitely going to come in With deciphers over .8.

There is a significant difference between getting adjunct radiation versus salvage radiation with a decipher >.3.

There is almost a 25% increase in metastasis, according to the graph, if you get a salvage versus adjunct when you have a high decipher.

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