New to the brotherhood, is my event timeline reasonable?

One thing you don’t mention is that you have cribriform found. That can be very aggressive, You should ask them whether it was small or large cribriform. The fact that it is found in the tissue left after surgery is quite negative. For that as well as the other issues, Bladder, neck invasion, and EPE.

Finding extraprostatic extension (EPE) indicates that prostate cancer has spread beyond the prostate's bound-aries, which is a sign of aggressive, locally advanced disease and a negative prognostic factor. The fact that it’s found in your margins is not good.

You should realize that the cancer is almost always in the bloodstream with all the issues you have. That means it can come back anywhere. Being on ADT for at least 18 months is recommended by the NCCN For someone with a Gleason eight. With all the other issues you have most doctors would put you on an ARPI as well (Zytiga or a Lutamide). Your urologist is out of his depths and should’ve probably had you on ADT already after finding all of the negative things.

You really would be better served to get a second opinion at least at a center of excellence. Mayo Clinic or John Hopkins Would be good choices. You anre left with aggressive cancer that has not been stopped you want a team of people looking at it not just a urologist. You are now way beyond a urologists expertise. The first thing you need to do is find a really good radiation oncologist, but going to a COE Will cover that.

You don’t want to monitor your PSA for a year or two you need to monitor your PSA for years probably. You should also get a decipher test to find out How likely you are to have a reoccurrence. With all the combination of things you have found in your treatment the chance of reoccurrence is very high. It would be good to know from the decipher test, how high.

Hello Jeff,
Thankyou very much for your comments, going back to refer to the pathology report, the comments with regard to the Cribriform Glands & EPE were under a heading of "Prostate Tumor Synopsis", does that mean it pertains only to the tumor within the prostate which was removed?
I've read many conversations since discovering this group, and have wondered why something wasn't administered to arrest the growth temporarily months ago until a decision was made regarding radiation/surgery, it may have saved my margin.
I have read about decipher in the group here, but have not seen that referenced anywhere in my test results, I will ask for it.
I agree about a second opinion, and will be moving forward quickly on that front.
Appreciate your thoughts, thankyou.

Hey Logan

You are new to this forum. When you see a message you want to reply to, hit the reply button under the message and that way the person you replied to will get a message that you replied to them.

Jeff

Logan, Jeff makes excellent points; you have a more aggressive case. You absolutely should get to a large center where a team approach - radiologist, oncologist, or any combo thereof, can treat you appropriately.
You should ask about adjuvant radiation, which is administered about 90 days after surgery. ADT is, of course, in the picture. I feel you need to hit this hard NOW before any further spread occurs. DO NOT WAIT for 0.2 PSA, as most urologists/surgeons recommend. That’s old time thinking with the pathological features you present. Best,
Phil

Hello Phil,
Appreciate your comments, especially the recommendations that yourself and Jeff both have given.
I will reach out to Mayo, perhaps Duke as well to find out which can work me in sooner.
I'll also request our urologist to provide cribriform gland size (small/large) since pathology merely mentioned "present", I'll also request a Decipher test on tumor tissue removed during surgery or earlier biopsy if any remains.
Feel overwhelmed at times but fully agree that time is of the essence and need to move onto radiologist/oncologist type care at this stage and not wait for rising PSA.
thanks again

I can't really add to what @heavyphil and @jeffmarc say,,,

With that clinical data, adjuvant therapy is a discussion you should be having with a multi-disciplinary team at a major NCCN Center.

You say - "Urologist spoke of monitoring PSA, at some point in 1-2 years or more I would be referred for intermodal therapy with a radiation oncologist." Hmm, if he said that to me with that clinical data, I would walk away (aka, fire him) , either he's woefully not current in managing prostate cancer or he's perfunctory and seems not to have looked at your clinical data prior to or during the consult. He violates several of my rules for my medical team...

1. Know your stuff. As part of my medical team, you must have a thorough knowledge of my cancer and of the latest developments in research and be ready to formulate a plan of attack. If what I ask about based on my research is not familiar with you, then admit it, say you will look into it and discuss on my next consult. Better yet, you will call me!

2. Do your homework. I expect you to have reviewed my medical records prior to my appointment, talked with other doctors I have seen that day.... You’ve looked at my x-rays; you have my pathology report, labs. I can tell when you're looking at my clinical data from tests for the first time !

4. Don’t close your mind to new hypotheses and don’t ignore clues that might lead you toward the best results. Rid yourself of the temptation to make your day easier by delivering perfunctory care.

If you have not already, read through the guidelines - NCCN and AUA, as a minimum, they may serve as a starting point for treatment discussions with your medical team. Granted, they can bea bit dated due to the rigorous process in establishing them and they are population based so your clinical data may not fit exactly. There are organizations such as PCRI and PCF which have invaluable patient centered informative resources,

Do your homework, you have a responsibility to drive the conversation with your medical team. That requires you to be informed, know the terms, definitions and reviewed literature, the guidelines and data emerging from clinica trails that is making its way into mainstream clinical practice.

Rules I have for myself:

Once I make an informed decision and carried it out, I never look back. Well, that is not entirely true, I look for lessons learned from that decision. The path is always forward: I continue to learn about PCa and always look ahead. What counts is today and what lies in the future.

Yesterday is gone, so forget it, well, learn from it.

I educate myself as completely as possible and take the time I need, I always know that no matter the outcome of a particular choice, I made the best possible decision. That knowledge that I have thought my decisions through carefully is what is really important—and may be more important than the decision itself.

I am in charge. Not my doctor. They need to be consulted, and their opinions and ideas should carry weight as I make my decisions. But I never forget it is my life, my today, and my future. I have made the best possible, fully educated decisions that makes sense for me, with the focus on long life.

Don’t walk in cold to an appointment. To make sure I do the best thing for my individual prostate cancer, I need to educate myself.

Knowledge will empower my BS detector. When two urologists told me ADT monotherapy is what I need and did not want to talk about imagining and combining other therapies such as radiation and chemotherapy, I didn’t just have to accept their advice on faith.

I walk in the door ready to start the conversation at a different level. I don’t have to spend time talking about the basics, things like Gleason grade and clinical stage and what they mean. I already know. I can have an intelligent discussion about the merits of a particular treatment for my cancer, my likelihood of being cured, and risk of side effects.

I won’t blindly accept the opinion of a non-specialist – I know that my cancer requires a team approach.

Kevin

Hello Kevin,
Thankyou for your comments, many good rules presented that I need to adopt and make my own going forward. Today already informed my urologist of our intentions to move toward team-concept and reaching out to Mayo/Duke today & tomorrow. I requested further detailed information of cribriform size and requested Decipher test on tumor tissue from surgery or biopsy that might remain at the lab....these will save my future team time to request now.
Working hard to eliminate things that I don't know going forward, agreed that lessons are learned in hindsight, but the path is forward.
Your comments are heard and appreciated.
thankyou again,
Terry