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

Hi @olsente, I'd like to add my welcome along with the supportive posts you've received from @proftom2 @melcanada @vjlvpjalways @digger @ringmastr1 @rxharleydude @cynthiac and others.

You may also be interested in this related discussion:
- Metastatic Prostate Cancer: Where do I go from here?: https://connect.mayoclinic.org/discussion/metastatic-prostate-cancer/

Olsente, I also want to welcome your wife. This support group is for patients and their family caregivers.

What chemotherapy are you getting and how often?

Hi @olsente, I'm really sorry for your prostate cancer diagnosis; you are quite young and I wish you, your wife, and family the best of luck throughout this unfortunate journey that you are forced to take. I'm 52 and was diagnosed with prostate cancer last year; I was pretty much diagnosed by accident as I went to ER for abdominal pain and the Dr. ordered an MRI which showed a slightly enlarged prostate so she ordered a PSA test to be sure and turns out I did have prostate cancer. The abdominal pain I was experiencing turned out to be an umbilical hernia which had nothing to do with prostate cancer. I think that because of our age, some doctors tend to not think of prostate cancer which is a mistake especially because they recommend PSA tests at age 45.
I had a radical prostatectomy in August of 2022 and so far doing alright, dealing with all the side effects, etc. but I can't complain especially knowing that you're going through a tougher time right now.
I'm glad you finally made it somewhere where you were correctly diagnosed; You are young and still have a lot of fight left in you. I wish you the best of luck; I'll be thinking of you and you and your family will be in my prayers.

God bless you and all the very best for your treatment.

Hi my guy was also diagnosed with stage 4 metastasis prostate cancer Nov 30 ! Theists showed it moved to bones spine schoulders ! Also taking casex abieritone ! Done chemo 4 times ! He also had a tumor blocking his kidney ! So he was wearing a netrausty bag ! Lots of infection s with it ! I believe the meds he has been taking has shrunk his tumor !😊 got his tube out today ! Bone cancer is dormant ! He takes Lupron shots every 3 months ! Bless u

My best to you. Your history sounds very similar to mine except that I'm 82. I'm taking Abiraterone and Elligard (quarterly injections) and Prednisone to mitigate some of the side effects. I feel great and my oncologist says that it's "asleep" (another word for dormant, I suppose). Need to live a day at a time and enjoy my good quality of life for as long as possible. I hear age being discussed in this thread and 54 is certainly young. My son-in-law has a friend who battled PC in his 30's, but was successfully treated.

I was diagnosed in Feb of 2022 at 75. Every test, scan, and doctor visit delivered a more gloomy prognosis. I ended up taking Xanax. After IMRT (local provider), I went to Mayo Phoenix and found hope. No more Xanax!
Abiraterone and Lupron dropped PSA to undetectable. I am now looking to the future. A cruise maybe and grandkids graduations and all of life's landmark events.
Best of luck to all you guy
PS: Check your VA benefits. My PC was deemed "service related". I am now receiving "Disability Payments " and other advantages. RECENT passage of PACT ACT changed a lot. Particularly in the cancer arena.

Very nice and encouraging post Sptguy. I just turned 76, diagnosed 20 months ago, lupron, Erleada, RP, and I lived in Phoenix until recently and for 50 years. I have personal experience with Mayo and several of their staff members in Phoenix. They are excellent and you lucky to have for your care. Best of luck to you and all of us!

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. 

I feel your pain and helplessness and frustration. Have they/you considered Pluvicto? If he CAN get out of bed, and uses the bathroom himself he should be eligible…

Look am now on Enzalutamide ( Xtandi ) and Zolodex injections
https://www.healthline.com/health-news/advanced-prostate-cancer-experts-say-this-double-therapy-can-help?slot_pos=article_2&utm_source=Sailthru%20Email&utm_medium=Email&utm_campaign=cancercare&utm_content=2023-04-04&utm_term=s:hl_n:cancercare&apid=&rvid=bb1eae2f35916c1f0f383cc46053ca8a110a0657e125948dea0d990208a5d64d