Posted 12/10/2020 2:13 PM (GMT -6)
There seems to be pretty minimal information, both on this forum and, to lessor degree, in the published medical/research field. What is there is pretty ominous. Most of the medical pares start out pretty much the same way.
Small Cell Prostate Cancer SCPC) is a rather rare, very aggressive sub-type of PCa. There is presently no standard treatment for care and a very poor prognosis. The Overall Survival Rates in published texts range from a low of about 3.9 months to a high of 59 months.
A few years ago, Tall Allen, a fellow forum member here did a very nice job of publishing a review of then- available SCLC information in his excellent blog. Link here:
https://pcnrv.blogspot.com/2016/12/small-cell-prostate-cancer-clinical.html
Please accept my apologies when my links don't work. it is something I just always struggle with.
SCLC, also sometimes referred to as Neuroendocrine Prostate Cancer (NEPC) appears to be able to develop several different ways. De Novvo, meaning it can be the original occurrence of PC. This I believe, would be pretty rare. It can develop concurrent with regular PCa, which is what I believe likely happened with me or it can develop later as standard PCa treatments continue. This where I believe that it is at it's most insidious as it is covered up by the presence of the original diagnosis while it grows.
Originally believed to be limited to about 1/2 of 1% of PCa diagnosis, it is now believed to be much higher than that - possibly as high as 17% It is rarely biopsied as it generally shows up in bone mets first but it can, and does spread to lymph nodes, viscera, usually lungs and liver and, far too easily, the brain. Just as in biopsies, men who pass from PCa are rarely autopsied but when they are, those results hold at about the 17% level.
SCLC most often shows up in men who have had successful Hormone/ADT treatments, usually for extended periods of time although mine was only about 18 months. It also normally appears when men reach the rmetatstic Castrate Resistance stage (m-CRPC) although again, this is not what happened to me. I am still very much catsrate sensitive with a PSA of >0.01 even today. The big issue is that SCLC does not secrete PSA so it has no impact on PSA levels. It is also true that it does not respond to ADT treatments. It can, and does continue to grow while ADT treatments continue. The only real red flag here may be exactly this - that PSA may remain flat or even rise when logic suggests that it should not. When this happens, new scans are critical in determining what is going on. A high resolution PET Scan with contrast is what originally showed mine along with a follow-up surgical biopsy to confirm.
Medical science's current success in treating PCa with newer and better hormone therapies will and is leading to higher occorunces of SCLC as men stay on these therapies for longer periods of time. This in turn, is leading to more research. However, just as it did to create the ADT protocols we have now, new research into valid SCLC treatments will take time. In the meantime, it is most often treated like Small Cell Lung Cancer, with which it seems to share some commonality.
Please understand that I am not trying to be a scare-monger here. My goal is simply to pass along what I have learned, and am learning, the hard way.
My Journey so far can be broken down pretty easily into three parts. My initial diagnosis is described below ans was pretty much a fluke. I had absolutely no health issues and didn't even have a Primary Care Physician. On a whim one day at the office, I called her and scheduled a physical - first one in 6 years or so. DRE showed nothing but my PSA came back high. Expecting a false reading she did it again and it came back higher. Switch to Urologist for biopsy. It came back with 3 cores at Gleason 5+5=10, stage t3c if memory serves. Quick bone scan found mets in 6 different places. The whole thing was just about as bas of a diagnosis as you can get. Too late for surgery so on to both a Medical Oncologist and Radiation Oncologist. Had max radiation and immediately went on full hormone therapy. The results were much better than I think my docs expected as I was in full remission within about ten weeks.. This was two years ago. All good since then on this front.
Part two began when I lost my job in Atlanta due to Covid last March. We knew that even though I was doing so well on ADT that my original diagnosis almost garaunteed that the PCa would be back at some point and likely worse that before. We decided it was time to head back home to northern WI (yes, it's cold) where all of my extended family is so we would be around them when things got tough.
New area, new docs. For more details please see my previous postings at
Potential New Issue - sorry but I have not been able to pull this link off my phone at all.
still felt good and had no changes in anything, as noted above PSA still undectable, etc. However, he insisted on all new scans so off we go. The PET scan found what at first was thought to be a problem lymph node. However, a 5 hour long robotic surgical biopsy found that it was an 8+ cm solid tumor mass of SCLC. This was such a surprise that it generated a lot of discussion with the pathologist and my dr. It is now believed that I likely had both forms of cancer when I was originally diagnosed and that it was the high levels of radiation that held the SCLC in check. Although I really don't remember this part at all, somewhere along the way, I was also told that I had three lymph no involved but no viscera. The biggest concern was that this large mass tumor sitting on top of my bladder and is wrapped around my left ureter. Unless this can be reduced, this will ultimately cause me some pretty significant issues.
Since there is no standard of care, my Dr wanted to put me on a clinical trial of Nivolumab and Ipilimumab (Opdivo and Yervoy respectively) you may be seeing these advertised on tv right now. Short version is that after then weeks they clearly have failed as the tumor and lymph nodes have continued to grow. The Yervoy caused very serious complications form diarrhea and I spent the entire week after Thanksgiving in the hospital getting that resolved.
Current status 12/9/2020
Began the first cycle of chemo - Carboplatin and Etoposide yesterday. Will get Carboplatin every 3 weeks and the Etoposide over three days on the same three week cycle. The Dr. wanted to add a kicker of the immuoitherapy drug Atezolizumab but he is so concerned about my issues with the Yervoy that we are going to skip that - at least for now. These drugs are pretty much the standard of care for Small Cell Lung Cancer so I guess we will see what they will do here. My plan is to keep this thread updated going forward as things develop. My apologies for the length of the first post