Living with metastic prostate cancer: Any positive stories to share?

Sorry Butch that you are experiencing so many side effects. I pray that some how you can win this battle. I am on Eligard and Xtandi, which has given me some nasty side effects too.

Here's my clinical history, nine years since diagnosis. The chart shows a PCa that is aggressive, GS 8, PSADT and PSAV, time to BCR after surgery...

It also shows an aggressive approach I with the support of my medical team have taken.

There is a tendency when first diagnosed both by the patient and their medical team to determine life expectancy and use that as the time frame when making decisions, especially when you're diagnosed at a younger age.

What I have learned is to approach treatment decisions from a five year window. If it works for 3-5 years, great, I've lived and enjoyed that time period, for example, my wife and I are travelling to Iceland in late June this year.

The growth in treatment options and imaging since I was diagnosed in January 2014 have been exponential and more are in the pipeline. With the advances in research, particularly in genetic markers and individual treatment options based on those genetic markers, we are entering an era of tailored treatment vice population based medicine.

Do your homework, seek out a medical team that advocates for you.

Here's "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. 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 myi ndividual 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 an dalways 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.