retireddoc: do you think that most doctors follow the guidelines of nccn.org when they make there suggestions to prostate cancer patients or do you think most doctors, based on their experience, will make decisions outside of those guidelines when they think specific circumstances warrant it? Would you recommend nccn.org as a reasonable choice for valid patient research?

I'm going to agree and disagree with you there.

Agree...
PCa is a heterogenous disease, ergo, we are all "studies of one..." My PCa is not yours, the SEs I experience may not be yours, the skill of my surgeon may not be yours.

What I disagree with is the "complete faith..."

When I had SRT in March 2016 after a very "successful" surgery in 2014, my urologist and radiologist both said they would only radiate the prostate bed. At the time, I had read articles on clinical trials and data emerging from Mayo that in men with my clinical data, BCR was often not confined to the prostate bed and consideration should be given to including the PLNs and short term ADT, six months.

They dismissed my thoughts, no "long term data" they said. Three months after finishing SRT, my radiologist hesitated after looking at my PSA results on her screen, turned and said, it's more than doubled since we started..."

Next, I went to see the Director of Urology at a NCCN Center who was also head of a major US urological association, impressive resume. I laid out my clinical history, asked his thoughts on treatment based on the CHAARTED and STAMPEDE trials, he dismissed my thoughts, said he would treat me with mono-therapy, ADT, lifetime.

I said, thanx, left, never went back. I wen to to Mayo, saw Dr. Kwon who was an early advocate of rather than linear and sequential treatment, each destined to fail, then death, combining them and bringing them forward early in the treatment when it was more "manageable."

That worked, brought 4-1/2 years off treatment.

Flash forward to 2023, rising PSA, I have decision criteria about when to image, PSA between .5-1.0, my urologist supported that. The Plarify scan shows a single PLN. I meet with my radiologist (the same one who dismissed my thoughts on SRT in 2016) who now asked, Kevin, what do you want to do. I said, what do you think about SBRT combined with six months of ADT? She agreed, wanted to write a script for Lupron. I said no, let's do Orgovyx for the reasons:

No flare
Faster to castration
Higher sustained castration rate
Lower CV SE profile
Faster recovery of T when stopping.

She agreed that was a reasonable treatment approach.

Next, I met with my "new" oncologist. He recommend we do 24 months of Orgovyx and add Xtandi, said the objective was curative. I looked at him and said, given my clinical history, not sure a cure is in the cards but I'm open to trying. He thought for a minute and said, yeah, let's do this...SBRT, 12 months of Orgovyx, add Xtandi is PSA does not respond. We meet every three months, labs, consult and decide for the next three months based on the clinical data.

I agreed..

So, my mantra is shared decision making between myself and my medical team. I have responsibilities as a patient, they have responsibilities as member of my medical team I have chosen.

I've developed "rules" for myself and members of my medical team, they've served me well. I've posted them here before.

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. The best leaders 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 Dr. Thrasher and Dr. Emmott 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.

Kevin

@retireddoc "The reason there are different approaches is that there not yet an established treatment protocol for every phase of this disease that is so complex."

Amen to that. IIRC (as a layperson), many of our drugs — like Erleada — were approved for general use only a few years ago, so we don't even have 10 years of data for them yet (sometimes not even 5 years), and the studies that have been run, like TITAN, are fairly broad (e.g. metastatic/non-metastatic, and castrate-sensitive/resistant). The concept of "oligometastatic" is also only just now becoming mainstream.

I'm in the Ironman study/registry (like many of the rest of you, I suspect). We're the generation whose experiences will determine the best practices for treating different kinds of prostate cancer in the future, which is both terrifying and exciting.