11 anniversaries since diagnosis of stage 4 prostate cancer

Thank you all for the kind words! I'm truly touched by the warm support within our community.

At my initial diagnosis, most metastases were in the pelvic region: adjacent organs, bones, lymph nodes. I remember there's also uptake somewhere in the spine on the bone scan, but it did not seem to impact the treatment plan. About six months into hormone therapy, I decided to receive pelvic IMRT to treat both the primary tumor and metastases. It wasn't standard at the time but is now part of the standard care for low-volume metastasis. I remember experiencing some side effects from radiotherapy, and not sure if my lower than normal hemoglobin level is partly due to that. But I think adding RT has helped in terms of long-term prognosis in my case.

I've never had a PSMA PET, so I can't speak to that from personal experience. My blood tests were done by Labcorp. Undetectable in that assay means < 0.10. My oncologist orders CT for me once a year, but it's also because they want to monitor the lung nodules.

Best to all!

Congrats! As soon as summer changes to fall, I'll be celebrating (??) my third anniversary since I was diagnosed with stage 4b/oligometastatic prostate cancer. I just had my quarterly blood work done yesterday, and my PSA remains below 0.01 on the ultra-sensitive test (in other words, undetectable).

At first, they told me to expect 5–7 years survival with progression perhaps in 18-24 months; now they don't mention a limit, and suggest maybe 10+ years without any progression. It's great to hear your confirmation that that's really possible these days.

Someone else mentioned time to undetectable PSA on ADT and ARSI. I just looked up my first three tests, and they were

October: 67.9
November: 11.6
February: < 0.01 (undetectable)

It's stayed < 0.01 ever since, tested every 3 months.

Here's a study (pretty old now) challenging the then-accepted 0.2 PSA as the threshold for recurrence, and identifying < 0.03 uPSA (ultrasensitive PSA) as the most-reliable predictor. It focused only on patients who'd had radical prostatectomies, so it's not necessarily fully-applicable to people who had only radiation and/or ADT and/or ARSI:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4527538/
That doesn't mean that if your PSA rises back to 0.1 after treatment bad things are happening; just that best practice would be to start monitoring you more closely sooner, BEFORE the PSA climbs to 0.2.

Take heart, stevecando54. My husband was first diagnosed in 2005 and has been Stage 4 since 2011. He has not been bothered physically over these years by the cancer, only by some of the side effects of treatment. He will be 78 in October and looks and feels well except for minor side effects of current Pluvicto treatment.

Diagnosed with 4b last October. PIRADS 5, Gleason 6-9's and 3-7's. Age 69. My oncologist said no guarantees or promises, but usually he can get at least 10 years for someone in my situation. Cancer spread to 3 lymph nodes, pelvic bones and femur bones.
Started docataxel chemotherapy right away, along with Nubeqa and Eligard. After 6 chemo treatments PET scan showed two tiny spots of cancer remaining. Still taking Nubeqa and Eligard, probably for one year. PSA has gone from 40 to .06. I have an MRI and PET scan scheduled for June and my oncologist thinks the two remaining cancer spots may be gone. Fingers crossed. So, no surgery or radiation and I'm feeling good. Thanks to everyone in this group. The information is excellent.

Take care,
Steve

Thanks for the reply and article. Yes the article does seem to refer to the days when surgery is the treatment of choice, if not the only available treatment. So when the prostate is removed, the docs then, and some now would insist that is it. No more cancer. Except that was not it. So the study tried to determine at what PSA level is the surgery safe. Today, practically no doc will say that PSA over 0.2 is good enough, for surgery, radio. hormonal, chemo or any combination. The issue is also between focal and systemic treatment. Surgery and radio are focal, ie they only deal with cancer in one area which is identified by scanning. Systemic seeks to destroy the cancer cell where ever the medication to get to.
So some docs now would prescribe ADT or chemo after surgery or radio to make sure. That begs the question. Why bother with treatments when still have to rely on systemic anyway? The answer for Dr. Scholz is simply does not do surgery.
Those were the good old days. Now we have ultra sensitve PSA < 0.003, and PSMA PET scan. Are we looking at totally different scenarios?
Sorry to get long winded again. I am just another layman trying to make some sense of the whole thing. At first, it seems straight forward enough. But soon as you think you understood something, there is another area you did not see before. What the heck?

Seems you are on the right track.

Thank God! Your story is very encouraging. I am denovo stage 4 prostate cancer high volume to the bone only (spin, ribs, pelvis). I was diagnosed on my birthday 07/27 in 2022. So, I am almost at my 2nd anniversary. Since age 50, I required my PSA to be tested every one to two years. There was never any concern. My highest PSA was 2.9. In March 2021, my last PSA before being diagnosed with cancer 16 months later, my PSA was 2.0 and my prostate was normal and even smaller than expected for my age. My Journey with prostate cancer then started in May 2022 when I contracted COVID after 3 Pfizer vaccines right after my March 2021 PSA of 2.0. While I was ill with Covid in May 2022 and started PaxLovid, I suddenly developed severe back pain. I was in constant agony and was unable to lay on my back for over 2 months. I had to try to sleep sitting up on couch surrounded by pillows to try to keep myself upright. Laying down was impossible. After 3 emergency room visits with no definitive diagnosis, it was determined my gall bladder needed to be removed. By the time that was determined, I was in so much agony that I required hospitalization and emergency surgery to remove my gall bladder. Rather than getting better, I got worse and severe back pain continued. A lumbar MRI that I was in too much pain to lie still for revealed bone metastases throughout the spine. I was rushed back to the emergency department and was hospitalized again. I had no idea what primary cancer could have caused the bone metastases and I requested a PSA upon admission. The PSA was 32 then 25 then 28. I had a bone scan and a bone biopsy from my hip. Testing detected additional metastases to the ribs, hips, collar bone, left knee, femurs, and cranium. Pathology confirmed Adenocarcinoma and primary Prostate Cancer. That was July, 27, 2022, my 60th birthday. I was immediately started on Casodex and radiation to the spine (10 cycles) and ribs (5 cycles) to stop the agony I was in. After radiation and Casodex for 30 days, I was started on Eligard (3 month injection) and Darolutamide (Nubeqa). Oct 11, 2022, I started docetaxal Chemotheropy. My PSA had dropped to down 1.005. My PSA dropped very slowly during Chemotheropy. On my 4th cycle on Chemotherapy my PSA rose from 0.6 to 0.7. I was justifiably concerned. After the 5th cycle, my PSA dropped to 0.53. After my 6th cycle of Chemotherapy my PSA dropped to 0.384. My doctor and I decided to continue to a full 10 cycles of chemotherapy because I had very few side effects other than fatigue. After the 10th cycle, my PSA dropped to 0.234. After chemotherapy, my PSA continued to drop to undetectable. I have remained undetectable ever since. So, it took me between almost a year to get to a PSA < 0.100. When I was going through treatment and my PSA was dropping slowly it frustrated and scared me. One of my oncologists said that PSA's drop for men with prostate cancer in three ways. For some, the PSA drops rapidly, for others it drops and then it starts to rise due to resistance, and the third type drop slow and steady. I am obviously the third type. I read an NIH study from 2017, "Rapidly decreasing level of prostate-specific antigen during initial androgen deprivation therapy is a risk factor for early progression to castration-resistant prostate cancer." Nonetheless, I remain troubled by how rapidly the cancer I am battling emerged seemingly out of nowhere. The literature on denovo metastatic prostate cancer does not explain what happened to me. Denovo metastatic prostate cancer purportedly occurs in men who do not monitor their prostate health and PSA, or have a rising PSA or high PSA and do nothing about it. They are usually older than I am and usually do not have adequate health insurance nor adequate utilization of health professionals. They are usually not financially stable and lack resources for adequate health care. They typically do not go to doctors frequently nor follow the recommendation of doctors when they do. They typically have some form of bad genetic player like BRCA1 or BRCA2 of it's cousins. None of that it true for me. I have no known bad genetic actors and no family history of prostate cancer. I did everything recommended to protect my prostate cancer health. Despite all of that, in a brief 16 month period of time I went from a small prostate with a PSA of 2.0 to a PSAs of 32, 25, 28, agonizing pain, and high volume widespread bone metastases. Because I was in so much pain and denovo metastatic stage 4, I never received a prostate biopsy. I have no Gleason score, nor cancer grade. I have no idea how diseased my prostate was or remains. My gut tells me to do more. To get metastasis directed therapy for the bone mets and to deal directly with the prostate. This is the approach of Eugene Kwon and other prostate cancer researchers. I continue researching and searching for answers. It frustrates me that the approach of systemic and directed therapy is only available for oligometastic PcA, 5 or less metastases. There is an ongoing study SABR COMET 10 that is taking this approach for up to 10 metastases. Hopkins had a study with men with up to 9 metastases upon PSMA PET were allowed to remain in a study for oligometastatic directed treatment. There is not consensus regarding how to define oligometastatic. I hope someday the definition will change to overall volume or the number of treatable metastases increases so I can receive systemic and metastasis directed treatment and treatment of the prostate. I am a man of faith. I could not get through this without my faith. I pray for scientific breakthroughs and miracles. The long time director of NIH's Cancer Institute recently retired after more than 40 years there searching for how to understand and replicate why some with metastatic stage 4 cancer spontaneously are cured. He reports seeing a variety of types of stage 4 cancer suddenly just disappear and he dedicated his career at NIH to find out how this happens and how to make it happen for all cancer patients. His emphasis is powering up the immune system to successfully fight back. There is always hope.

Its morning. I am on my first cup of coffee, checked email, click, best smile in years. Thank you Mcc.
On this page we are all playing on for same team and you just gave us all hope. My Stage 4 Prostate Cancer diagnosis was 3.5 years ago. I was on all night ER visit for pain in my lower back. Test, scans, lots of caring people. Didn't know what an oncologist was until she was standing next to my hospital bed first thing in the morning.

Every posting on this board today today is so hopeful. Thank you Mcc.

Apparently, about 10% or so develop immunity against cancer. As the good cells clean up the dead cancer cells, they learn about their DNA, enzymes etc. They then pass on that to other good cells so they go destroy the cancer.