← Return to 11 anniversaries since diagnosis of stage 4 prostate cancer

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@wooldridgec

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.

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Replies to "Thank God! Your story is very encouraging. I am denovo stage 4 prostate cancer high volume..."

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.

"The literature on denovo metastatic prostate cancer does not explain what happened to me."

I'm so sorry you have to deal with that, too.

Advanced prostate cancer cases for men in their 50s and early 60s are rising now — the myths you referenced (prostate cancer is an elderly disease, it progresses slowly, advanced cases mainly occur in poor people who don't take care of their health, etc) encouraged health authorities around the world to recommend stopping routine PSA screening from age 50, and we're paying the price.

My onco team told me that about 5% of prostate cancer cases strike young (from late 40s to early 60s) and move fast — even with annual PSA screening, that kind often metastasises before it's detected.

Some well-known people with the early, aggressive type of PC:

Johnny Ramon
Stephen Fry
Robert DeNiro
Jack Layton (Canadian politician)
Colin Powell
Roger Moore
John Kerry
Mandy Patinkin

So yeah, there are lots of us, and having people ask "isn't that mainly for old people?" or "it's really slow, isn't it?" doesn't help.

Sorry to hear about the ordeals you went through. Thank God you were able to complete the triplet therapy. The fact that your PSA dropped to undetectable should be a very good sign.
I was probably not oligometastatic by definition: 5-6 pelvic bone metastases plus lymph nodes. But in 2013, drugs like darolutamide were not available (abiraterone was only approved for castration-resistant stage). My pre-RT PSA was about 0.5 and it looked unlikely to reach undetectable with ADT alone. It felt like a gamble to go for a treatment before there is consensus, but reasoning and checking published studies can help.

That's quite an intimidating experience with PCa. Glad to see you had the perseverance to get to where you are and understand your frustration with future treatment outlook.

You could get a readout on the buffet of PCa cell types you currently have by requesting a wet biopsy. This simply looks for DNA mutations of cancer cells circulating in your blood. The pathology of the original cancer in your prostate may not be all that relevant now given that you've had multiple mets.

Based on your description I don't think I'd be going all "tin hat" on everyone by being suspicious of the timing of the vaccines, viral infection and your PCa diagnosis.

Best of luck to you sir!