Prognosis for Stage 4 Metastatic Prostate Cancer

Phil,
I am sorry to hear you are now struggling. This is a tough disease. Everyone responds differently. Can you please give a short history of your diagnosis? Were you diagnosed Metastatic? If so, are you high volume or low volume and where are your metastases? What type of cancer was found, Adenocarcinoma, Small cell, or Neuroendocrine? Did you have Genetic and Genomic testing? Was anything found like BRAC1 or BRAC2? What was your PSA at diagnosis and what is it now? What treatments have you had up to this point (i.e., ADT, Nubeqa, Xdandi, Apalutamide etc). Did you get any radiation or Chemo -how much? Have your doctors offered Pluvicto?

The reason I ask is I also asked that same question and I received varied answers. The first answer was I cannot be cured, but we can treat the cancer like a chronic illness and I will probably dies of something else as long as the cancer does not mutate into something worse.

With triplet therapy the percentage of those who are still alive after 5 or 10+ years has drastically increased. The ARSENS study continuous to produce positive post results too. Of coarse, this depends on ones overall health, diet, and co-morbidities.

I'm in also in a group that has several men that are stage 4 like me and they are at 7, 8, and 9 years into this disease.

Three years ago I got the same advise, 4-5 years. It is extremely difficult not to ask, and the doctors might have liability in not giving this advise. The advise caused me to update my estate plan with more thought and detail than before. When you have cancer, how long is a big issue. Many cancers have a much shorter life expectancy than PC.

You are right. Unfortunately, there are grey areas in prostate cancer treatment, as in any branch if science. New discoveries are made. Sometimes they create their own grey areas. According to practitioners who treat thousands of men every year for decades, triple does work. It works better than the studies indicate. Those necessary have limited time frame and parameters. But at the same time this form of treatment may not have been long enough, and widespread enough to provide the data for positive conclusion. For example, UK only approve of the use of triplet in 2022 or there abouts.
So when you press a doctor, he or she would just have to go back to what they learned at Med School.
On the other hand, it is the experience of practicing doctors that those who reach the PSA level < 0.1 is cured or in long term remission. But their opinion seems to be based on RT and Homo only.
What if the PSA falls below 0.1, or even 0.003 undetectable on triplet, without radiation or surgery? It seems even the doctors of the big clinics in USA has not yet come up with an answer. The presumption is they must be the same as the others. Who knows?
In some ways, that is where forum like this is most helpful. Apart from mutual encouragement, we have real examples of long term recovery, or perhaps even cure.
Sorry to get rather long winded, again! I am just another layman trying to make some sense of the whole thing.

2017 radiated prostate out 2020 radiated L2 lumbar put on Xtandi Now on Radium 223 injection plus Xgeva Feel great

I was stage PC stage 4 with a Gleeson score of 9-10 when diagnosed 2 years ago. I went to Mayo-Rochester and underwent ADT (Lupron) and chemo (6 rounds of Docetaxel) followed by 20 fractions of radiation. I have been clear for a year now. During my treatment, I met a gentleman with a PSA of 3400 (yes) who went through my same therapy, had a hip replaced, was stage 4 and had a second round of chemo with Lutetium. Although only a third of patients respond well to that treatment, he did and is now clear.
It’s not a fun journey but you’re not on it alone. Thoughts and prayers are with you and your father.

Yes Lu 177 may become the standard of care I am on 4th injection but of Radium 223 or Xofigio as my cancer in in bones only he spine It works same as 177 but no hair loss and few symptoms not like chemo.

Hello. My husband was diagnosed in 2021. He was 52 at the time of diagnosis. He has always been one of the most active and healthy individuals I have ever known. He ran many marathons, including Boston so he was fast, never ate anything unhealthy, never smoked, rarely drank and exercised daily, but has a family history of prostate cancer - both brothers, his dad and uncle all had prostate cancer and one brother at the age of 40.

Nobody in his family ever had prostate cancer spread outside of the prostate, except my husband. And all family members who had prostate cancer had their prostate removed.

At diagnosis my husband’s Gleason was a ten and he was informed he has an aggressive form of prostate cancer.

After he had his prostate removed we were informed that the cancer had spread to his lymph nodes.

This was devastating. Stage 4 metastatic prostate cancer at age 52. We have three children and have been married now for 25 years.

He underwent radiation for 33 days and then two years of hormone therapy. aberaterone, daily steroid and lupron. He felt bad. Not himself, very limited energy and frankly depressed. It was a very difficult time for him and our family.

Fast forward and he is now three years out from initial diagnosis. He has been off the hormone therapy for one year. His PSA is undetectable. He has more energy now than he did during treatment and we are thankful that so far his cancer has not come back.

This diagnosis has forced us to live life by the day. Nobody knows how long we all will have. We have good days and then some days are full of worry and asking what if.

We are thankful for the time we have now. My husband has plans to do some things he would otherwise put off for later on in his life had he not been diagnosed with cancer.

He’s going to run the Grand Canyon from rim to rim, in the fall. Even if the definition of run may include several breaks in between to stop and rest.

I read these posts weekly and it helps me to hear your stories.

Enjoy the day today. The present is really all anyone has.

I like where you’re going with this. Presently I’m stage 4 on Lupron X4 months and Erleada 120 mg daily. My psa is 0.02 and I will ask for triplet therapy. Thanks

Yes. I have had that treatment (triplet therapy). I have high volume de novo stage 4 metastatic Prostate Cancer (PC) with metastases in the spin, hips, and ribs (i.e, bone only). I started with 10 radiation treatments to my spin followed by 5 to the ribs. Oncologist first started me on Casodex for 30 days and then I started 3 month injections of Eligard along with 600 mg daily of Darolutamide (Nubeqa). I immediately started chemotherapy (docetaxel) 10 cycles. My PSA dropped from 32 down to 1.005 at the start of chemo and then slowly dropped to undetectable (i.e., < 0.100) 2 months after chemo ended. I continue to stay undetectable. If you have PC in the bone, Alkaline Phosphatase is another important biomarker. Mine was around 180 when I was diagnosed. I consistently stay down between 38-40 now. Alkaline Phosphatase is raised when the PC destroys the bone. It is up to you, but I would request additional cycles of chemo beyond 6. The 6 cycles was arbitrarily chosen to reduce side effects. Your Overall survival goes up dramatically when you increase upfront chemo to 8 or 10 cycles. You need to ice your head, hands, and feet during chemo to reduce neuropathy. Triple therapy is the standard of treatment now and based on the results from ARSENS trial. The trial was 4.2 years and those men who got Darolutamide (Nubeqa), ADT, and 6 chemo's are still alive and are still Castrate Sensitive. Matter of fact, new ARSENS data has been recently been released, and at now 5.5 years, the results for these men are the same. Note that everyone responds differently to treatment. If you can handle more chemo, talk to your doctors about continuing if you have the resolve. Also be aware that it may take longer to recover from chemo if you do extended cycles. Darolutamide does not break the blood Brain barrier so you will not experience much brain fog. But you will get chemo brain. It will pass over time. Lastly, ask your doctor for genetic and genomic testing to make sure you do not have any genetic markers such as BRAC1 or BRAC2. If you have pain from bone metastases ask for palliative radiation to shrink to tumors. No matter what any one says, radiation kills the cancer - even palliative radiation. The idea is to kill the cancer up front and any micro metastases left behind. Think of triplet therapy as carpet bombing the cancer. Let no cancer be left behind and bite you in the butt years later. Do not give it a chance. God Bless you.

Thank you. I will talk to my Dr. about you recommendations. Sounds like you know from experience.