That sounds great in theory, I do respect the training, education and experience of my medical team...but, here's my rules, both for myself and my medical team...why did I put these together over time? After surgery and BCR failed, the latter because my medical team dismissed what I thought based on literature I reviewed from NCCN Center of Excellence which resulted in failure of SRT, I met with a Director of Urology at a NCCN Center where I live. I laid out my clinical history, pointed to various CTs and explained why I felt they were pertinent to a treatment decision for me.

He looked at me dismissively, said he would not image, put me on ADT and asked if I had any questions. I left, never went back, went to Mayo, had the 11 Choline scan, triplet therapy, sucked for 18 months but brought 4-1/2 years off treatment.

In March 23 when it came back, my urologist was off vacationing in Europe, not an issue, I saw my radiologist who had been part of that group when I did SRT but left to discuss SBRT. She asked if I would like to see an oncologist, I said yes, saw him, after discussion, we settled on 12 months of Orgovyx, add a ARI if PSA did not drop to undetectable within three months.

My urologist was back and I had a scheduled appointment with him. WHen I laid out what I was doing and asked for his thoughts, his response was, "I can't help you as your care is with another practice..." I looked at him and said, that's the wrong answer, the right answer is here are my thoughts on your treatment plan and how can I help you...!

I think by and large member of the forum follow the guiding principles that we are all not trained, educated and certified medical personnel, rather, members of the club we did not ask to join, sharing our experiences, thoughts, and links to literature which may be relevant.

I'm going to try and say this without offending anyone but in my ten years, prayer has never entered my decision making process as one of my "best options." facts have.

So, my rules:

1. Please know your stuff. As a member of my medical team, you should have a thorough knowledge of my cancer and of the latest developments in research, and be ready to formulate a plan of attack.

2. Please do your homework.I expect you to have reviewed my medical records prior to my appointment. You have looked at my x-rays; you have my pathology report; you know how many children I have. In the world of cancer care, every scrap of data must be scrutinized for its significance.

3. Respect my point. of view. listen to all sides thoughtfully before reaching a conclusion. With patience and finesse, I am sure you can help me to feel confident about the plan you have shaped for me.

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

5. When it's decision time, decide! If you think treating my cancer is not worth it; if you think I am at the point where I should stop chemotherapy; if I have veered off the path you have cleared for me—then speak up! Care for me with a dogged determination to get me healthy and do not keep any secrets that might lead to regret. I want an oncologist who knows what is best for me and doesn’t chicken out in difficult times.

6. Be responsible. Follow up on promises and follow through on tasks. I can tell you with absolute certainty that there is no greater disappointment than realizing that you cannot rely on your doctor.

7. Talk to me. I need your advice, comfort, and expertise; I am scared and discouraged—are you willing to take a seat, look me in the face, and answer my questions? Leaders welcome scrutiny of their communication skills. No one cares if a flunky is curt.

My Rules:

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 my urologist told me ADT 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.

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 particularly 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.

Once I make an informed decision and carry 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 make 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.