What should I expect moving forward

You definitely have a serious case. Usually, they will put you on ADT and ARSI plus chemotherapy.

ADT and the ARSI can reduce your PSA dramatically. The chemotherapy can stop the pain in your Back.

The problem is that ADT and the ARSI can aggravate your Blood count problems. It definitely sounds like Zytiga Would not be good for you. Nubeqa is the ARSI With the least side effects, so it may be the best thing for you.

The one thing I do not have with my ADT and Nubeqa is white blood cell counts, They have been normal. Red blood cells have been low, But I have been on ADT for nine years. My hemoglobin has also been low.

There’s no knowing how well treatment is going to work for you. For some people that gives them many years of remission.

You really need to speak to your doctor about the side effects that can occur if you do go on ADT plus an ARSI. No, where is my pen?

Thank you for your information.

Back in February I, too, was diagnosed with metastatic prostate cancer: my PSA has gone from 43 to 67 in two weeks, my Gleason score was 4+5 (9) and my oncologist said my disease was too advanced for surgery. A pet scan showed intrusion of the pelvic lymph nodes and I was prescribed Abirtiga and prednisone then scheduled for 30 sessions of radiation in starting July - the doctor wanted to start sooner but I had planned a bike tour of Finland so she agreed to postpone the radiation until I was back in country.
At the time of diagnosis, the urology nurse recommended:
*I update my will
*I join Gilda’s Club
*I apply for a spot in hospice care
And she recommended that my wife start shopping for funeral homes - she had a list of ones she thought were fair.
Needless to say, my wife burst out in tears.
I am an athlete and I have suffered from back pain ever since I crashed my bicycle at 40 mph on a training session some five years ago so any change related to cancer would not be noticed. (The bike, my favorite, didn’t survive the crash).
So, despite the dire diagnosis, I continued to ice speed skate, winning a silver medal the following month while skating against five men decades younger than my 67 years. At the same time, I also began training for an endurance bike race scheduled for June but I purchased insurance in case the cancer made it impossible to ride. I did finish the 67 mile ride and, while I wasn’t as fast as the year before, at no point did I feel like giving up.
I continued to train during the radiation sessions with an eye on riding the Peninsula Century - 100 miles - two weeks after the radiation treatment ended … and I DID ride it, finishing in 6h13m.
This week I started training for the speed skating season. Radiation has slowed me so I have trouble sprinting but I’m a hard core competitor and I’m not going to let the cancer win.

take heart! Jeff is right on..the ADT will slow the cancer spread down dramatically ( it brought my PSA down from 70 to .05 in less than 2 months) after 3 months of ADT, you will prob start radiation for 45 or so sessions ( 5 day/wk) .. you maybe need couple of shots of chemo with your beer ! start exercising as much as you can, drink water, Alpha Lipoic Acid..rest relax, start a very healthy diet...

Dont give up ! I believe you will be around 5 yrs longer AT LEAST !

@madisonman0326
What you describe looks awfully familiar, did you post this in another place?

With what you have, it’s not time to throw in the towel. Your oncologist has you on ADT and an ARSI. I see you’re already on Zytiga (abiraterone) which can be pretty hard on the body and cause fatigue for a lot of people. If you’re handling it well it’s a great choice. If it becomes a problem, you should ask for Nubeqa To replace it. It is much easier on the body and doesn’t pass the blood brain barrier. I know a number of people in their 80s taking it because it’s Side effects are easy to manage. I’ve been on Zytiga and it wasn’t too bad, but it gave me a lot of heart issues, I am now on Nubeqa An after 15 years of PC, and four reoccurrences, I’ve been undetectable for almost 2 years. Side effects are not even noticeable, I’m 77.

It sounds like you have less than five metastasis, Which would make radiation sensible. The thing is radiation. Will probably give you some more time and then you have a choice of Pluvicto or chemotherapy If it comes back. Those treatments can give you more time.

I know a number of people who had Gleason nine and many metastasis issues and are still around five and 10 and more years later. A few of them were given five year or shorter Life expectancy by their doctors and blew by those.

My oncologist said 2 yrs of chemo and they doing whole pelvic radiation along with hormone suppression thery to get testosterone level to zero.

@timoppermann
Something strange

Chemo is usually done in six sessions. I’ve never heard of it going more than 6 months much less than two years. Sounds like there is some confusion.

They would have you on ADT for two years but do radiation after a couple of months of ADT. ADT will get your testosterone down to near zero, and also keep your PSA low.

@madisonman0326 I wish YOU could be in a TV commercial for PCa!! Those old farts playing shuffleboard and doing swim aerobics got nothing on you, man!! You ROCK!
Phil

Well, there is likely much living in your future, albeit with treatment, its side effects, labs, consults...

As you can tell from other answers from members of this forum, it is possible to live with this. cancer. While not perhaps as high risk as you, my journey has lasted 11+ years

First thing I would consider doing is learning all I can about the terms, definitions, treatment guidelines...This disease, like others, has its own language. Learning that language can make your consultations with your medical team much more beneficial, a dialogue vice a monologue where shared decision making is in play.

There are various organizations with invaluable patient resources. Two I'll suggest are:

Prostate Cancer Research Institute - https://pcri.org/
Prostate Cancer Foundation - -https://www.pcf.org/

The guidelines form a starting point for discussions with your medical team. They are the science of PCa, based on clinical trials, peer reviews...keep in mind because they are rigorous, they can lag behind data from clinical rails making its way into mainstream clinical practice. Another consideration is they are population based, so, may not exactly fit your clinical data when making a treatment decision in concert with your medical team.

NCCN - https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients/guidelines-for-patients-details?patientGuidelineId=50
AUA - https://www.auanet.org/guidelines-and-quality/guidelines/advanced-prostate-cancer

Next up, get a multi-disciplinary team, you can certainly have a urologist on that team but a radiologist and oncologist as a minimum, preferably with a background and experience in prostate cancer.

Your likely first treatment for synchronous metastatic PCA is doublet or triplet therapy, here's one link, you can find others- https://dailynews.ascopubs.org/do/would-you-use-doublet-therapy-and-not-triplet-therapy-patient-newly-diagnosed-mhspc

There are a number of "rock stars" out there with aggressive approaches to treating high risk cases such as yours. My personal favorite is Dr. Kwon, others may chime in with theirs. Consider taking some time to view his videos, fair warning though, it helps to have an understanding of the terminology and definitions for prostate cancer, here's a link - https://www.youtube.com/playlist?list=PLHj3V3RB2V-gMK9TMMGa-OwKp9K4D7TEB

You will face decisions, understand there are a plethora of choices and there may not be an exactly right decision, but, there will be good decisions based on the guidelines, your specific clinical data and discussion with your medical team.

Some of the "rules" I have developed over time:

I educate myself as completely as possible and take the time I need to make a treatment decision, I always know that no matter the outcome of a particular choice, I made 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 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.

For my medical team...

Know your stuff. As part of my medical team, you must have a thorough knowledge of my cancer and of the latest developments in research and be ready to formulate a plan of attack. If what I ask about based on my research is not familiar with you, then admit it, say you will look into it and discuss on my next consult. Better yet, you will call me!

Do your homework. I expect you to have reviewed my medical records prior to my appointment, talked with other doctors I have seen that day.... You’ve looked at my x-rays; you have my pathology report, labs. I can tell when you're looking at my clinical data from tests for the first time !

Respect my point of view. Listen to all sides thoughtfully before reaching a conclusion. With patience and finesse, I’m sure you can help me to feel confident about the plan you and I have shaped for me.

Don’t close your mind to new hypotheses and don’t ignore clues that might lead you toward the best results. Rid yourself of the temptation to make your day easier by delivering perfunctory care.

When it’s decision time, please decide! Care for me with a dogged determination to get me healthy

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.

Please 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?

And yes, the front desk is key, sets the tone, pleasant, efficient on check-in and scheduling on the way out...a kind word, smile...and don't call me "honey." You have my records, I am ok with you calling me by my first name or Mr.___

Kevin