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Profile picture for kujhawk1978 @kujhawk1978

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

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Replies to "I can't really add to what @heavyphil and @jeffmarc say,,, With that clinical data, adjuvant therapy..."

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

Very helpful for others on this journey!! Thank you!