Any hope for aggressive metastatic prostate cancer?

Recently had CT scans with and without contrast of my pelvis, abdomen and chest. Haven’t seen oncologist yet. Curious to the severity or positive outlook of finding innumerable sclerotic foci in the visualized chest, abdomen and pelvis osseous structures. Mild compression deformity of T8-T10 vertebral body superior end plates suggestive of mild chronic insufficiency fractures.

How concerned should I be?

There is hope and jumping to conclusions without sufficient knowledge is not productive. Your medical team needs to tell you what you now have to do and you need to be good listeners and doers, but also write down your questions that you want answered. It is a battle that is worth fighting. We have all had or will have something similar to what you are now fighting. Don’t give up. Good luck to you and us all.

Thank you for the awesome response. I will definitely do that.

There is hope and lots of hope. Just hold on and do what the docs tell you.

No reason to hit the panic button. I remember my diagnosis, the shock, the angst...as I say, that's ok, then, the pity party is over, time to face and deal with the diagnosis.

Starting point may be to build a multi-disciplinary team, urologist, radiologist and oncologist. They should have as a focus, treating prostate cancer. As time marches on, you my want to add others, cardiologist, diet and nutrition, a physical fitness trainer

Next up, inform yourself, While you want to listen to your medical team, it is you who is the best advocate based on the outcomes you want. These forums have members who medical team are behind the times, some through their own styles, others just too darn busy to stay abreast. Read the NCCN Guidelines and gather every scrap of clinical data - imaging, labs, biopsies. I would look into triplet therapy and discuss with your multi-disciplinary team.

Yes there is hope, odds are it's not just going to fall into your lap, you're going to have to go get it. The rate of change in imaging and treatments since I was diagnosed in 2014 have been exponential with more following.

I've posted "my rules" before on this forum but they may be food for thought as you begin your journey.

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 my individual prostate cancer, I need to educate myself. *Knowledge will empower my BS detector. When Dr. Thrasher and Dr. Emmott told me monotherapy 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 (I just fired my urologist when his ego got in the way of his ability to help in my treatment decision). 

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.

Finally, lower you horizon. Your medical may talk about life expectancy and if that's long, 15-20 years, may not be the lens you look through in making treatment decisions.. Perhaps the next five years, will this work for the next five years, if so, more treatment options will be on the decision pallette.

Kevin

Thanks

Thank you, Kevin. I learned some things.

John

Yes! There is always hope! I was diagnosed with Stage 4 metastic PC in January 2023. It had spread to my lymph nodes, hip, L4, and sacrum. I also have a 3cm lesion on my liver. My PSA was 359. I'm 54. My initial reaction was complete panic and I expected to be dead within months. My doctors at Phelps Hospital in Tarrytown came up with a plan and started treating me. Standard ADT of Abiraterone, prednisone and Lupron. Xgeva shots every month for bone strength. 5 radiation treatments for my affected bones. My PSA is down to 2.6 and my doctors are talking about me being around for more than 10 years at this point. I know there are no guarantees with PC, but I'm happy with the hope that my doctors have given me. I actually feel great. No side affects from any treatment or the PC (except for the lower libido). Talk to your doctors. Make sure you get a second opinion too. I went to Memorial Sloan Kettering in Westchester for my second opinion. I have confidence in my doctors and I continue to have lots of hope. Hang in there and continue to chat with people here. It's a great form of group therapy. Best wishes to you and your husband.

Jojoteacher18: good advice from all. One more thing. Take one small step at a time. The amount of information can be overwhelming and at times confusing but keep moving and coming back here. Real live experiences with patients gives you an idea of options that can be discussed with experts.

That is very encouraging. Thank you for the information.