Biopsy results: I'm very scared and afraid

@perrychristopher said....." be sure to get a surgeon with at least a 1000 surgeries under his belt using the DaVinci system. "

Quoted for agreement!

I also wish I had enough knowledge to ask for the therapy prior to surgery. I was VERY lucky in that dept however. Best of Luck!

Well, that sucks, I still remember getting the phone call in January 2013 at the age of 57 from my urologist saying my biopsy was positive for prostate cancer...and pretty aggressive! Heck, like many men, I didn't even know what a prostate was! It was not but a few months before that where my GP and I had discussed aging, part genetics, part chance and part how one took care of themselves. Since I saw my medical team routinely for annual exams, labs, diagnostics tests, ate a reasonable diet, exercise frequently, lead an active lifestyle, was relatively stress free in my life, I envisioned a long, active and healthy life. So my diagnosis was showed the wisdom of my never going to Vegas to gamble.

So, consider doing as I did, have your moment of pity for what you have then pick yourself up off the floor and fight.

The first thing you need to consider is informing yourself about the dizzying array of treatments. To say that the rate of change in treatment options since I was diagnosed was exponential, may be an understatement. You may want to consider starting with the NCCN Guidelines, the Prostate Cancer Foundation has an informative guide too, there are others. Your discussion with your medical team need to be at the graduate, not undergraduate level of discussion about what the clinical data means and how it informs a treatment decision and what those treatment decisions are and why..

Some other things which helped me:
Your medical team may talk about treatment outcomes in the long term, 10-15 years. Maybe ask them, will this work for the next 3-5 years, if so, new treatments will undoubtedly come into play. We, the patient and medical community have made tremendous strides in managing this disease, living with it for a large number of us vice dying from it. Though let's be real, many are each year.
Develop some rules for yourself and your medical team. When I saw the Director of Urology at a major NCCN Center and he was out of sync with the treatment path I wanted to take based on my clinical data, not the population based standard of care, I left, went elsewhere. Here are the rules I developed for myself and my medical team:

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 bes cutinized 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 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.

So, "pity party" is over, time to get to work!

Kevin

As always, good solid advice, Kevin. Knowledge is power. We need to educate ourselves well, build a solid medical team in whom we have trust
Keep reading so we know current options, not just options from a few years ago (we need to know them as well because they can still be valid). Understand our labs and clinical data and if we don't. Ask questions until we do.

Staying educated, staying positive and staying patient are essential for this long and often difficult journey.

@thomasalm : do your best to stay positive and patient. Keep doing what you find rewarding. Rely on your family and friends. Go to your coffee club, engage in your favorite activities. Your disease will always ca

Well, that sucks, I still remember getting the phone call in January 2013 at the age of 57 from my urologist saying my biopsy was positive for prostate cancer...and pretty aggressive! Heck, like many men, I didn't even know what a prostate was! It was not but a few months before that where my GP and I had discussed aging, part genetics, part chance and part how one took care of themselves. Since I saw my medical team routinely for annual exams, labs, diagnostics tests, ate a reasonable diet, exercise frequently, lead an active lifestyle, was relatively stress free in my life, I envisioned a long, active and healthy life. So my diagnosis was showed the wisdom of my never going to Vegas to gamble.

So, consider doing as I did, have your moment of pity for what you have then pick yourself up off the floor and fight.

The first thing you need to consider is informing yourself about the dizzying array of treatments. To say that the rate of change in treatment options since I was diagnosed was exponential, may be an understatement. You may want to consider starting with the NCCN Guidelines, the Prostate Cancer Foundation has an informative guide too, there are others. Your discussion with your medical team need to be at the graduate, not undergraduate level of discussion about what the clinical data means and how it informs a treatment decision and what those treatment decisions are and why..

Some other things which helped me:
Your medical team may talk about treatment outcomes in the long term, 10-15 years. Maybe ask them, will this work for the next 3-5 years, if so, new treatments will undoubtedly come into play. We, the patient and medical community have made tremendous strides in managing this disease, living with it for a large number of us vice dying from it. Though let's be real, many are each year.
Develop some rules for yourself and your medical team. When I saw the Director of Urology at a major NCCN Center and he was out of sync with the treatment path I wanted to take based on my clinical data, not the population based standard of care, I left, went elsewhere. Here are the rules I developed for myself and my medical team:

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 bes cutinized 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 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.

So, "pity party" is over, time to get to work!

Kevin

Hi Kevin,
Just wanted to comment on your postings and personal research. Thank you so much for sharing your findings, thoughts, and knowledge. Your attention to detail and analysis is easy to understand. I am sure there are many who appreciate it as much as we do.
Be well,
Dee

Thanx, these forums are designed to share our experiences so that the knowledge, experience and lessons from our own journey can be shared.

I appreciate anyone trying to give me feedback.
I'm really concerned about survival of these conditions after treatment.