Ugh, GHS 10, ok, pity party is over, time to get down to work.

Before your meeting, I would consider some heavy reading.

Start with the NCCN guidelines. These are the baseline treatments for you and your medical team to discuss. For example, you say Bomne and CT scans, depending on the results, a newer PSMA scan may be part of collecting clinical data to inform your decision. I've attached them to this message.

Next up, do some reading on doublet or triplet therapy - with the clinical data you provide so far, monotherapy is not a recommended treatment decision. Here's one article to get you started, there are others - https://pubmed.ncbi.nlm.nih.gov/36058809/

You are going to have to set some priorities and parameters for you and your medical team such as, how aggressive do you want treatment to be, that is a mix of quality and quantity of life, are you open to clinical trials...

You want a team - oncologist, radiologist and urologist, preferrable ones who focus on prostate cancer and are experienced. You also want a GP or Primary Care physician, cardiologist and if needed, nutritionist.

You must be your own advocate and the quarterback and play caller for your medical team. When I was doing ADT and Chemotherapy team I made sure the Urologist's office did not try and schedule my next Lupron shot on the day I was sitting in the infusion room. If you expect the doctors and staffs to do that kind of scheduling coordination, well...

Ask for and keep all labs, visit notes, imaging results, etc. Build yourself a chart, I've attached mine. When I brought a new oncologist on boards, I used it to bring him up to speed. I also keep a MS EXcel File with all labs, CBC, Metabolic...procedures, imaging, surgeries, vaccinations...For my blood tests, I graph those...trends are important, single results no so much. When it comes to medical history, a picture is worth...

My doctors know that I am an advocate for shared decision making and their job is to support me with their expertise and capabilities in ensuring I do not die of PCa, rather with it!

If any doctor's ego gets in the way of him or her helping you find the best possible solutions, fire them. My last urologist had his feelings hurt when I went outside his practice to develop and implement a plan. He said, I can't help you....I said no, the correct answer is, how can I help you...? Needless to say, he's no longer on my medical team.,.

Like most things, prostate cancer has its own language. Starting learning the terminology, definitions...

I've posted these before, may be useful as you start your journey:

1. Please know your stuff. 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. 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. Leaders listen to all sides thoughtfully before reaching a conclusion. With patience and finesse, I am sure you can help me to feel confident 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 of fthe 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.

Rules for ME:

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.

Hang in there, the GS 10 is a tough one but the outcome is not necessarily inevitable.

Ok, probably enough for now, others will chime in.

Kevin

Responded to a VERY old post. Oops.