Stage IV Small Cell Carcinoma, Sudden Severe Illness
My father was diagnosed with relatively aggressive prostate cancer (Gleason 8, I believe) about 5 years ago, and underwent radiation, which temporarily worked.
About a year ago, the cancer came back, and had spread to a lymph node.
A month ago he was seemingly fine. His PSA was low and staging scans showed the tumor-shrinking.
His children (my brother and I) were mostly out of the loop at this point, however, he suddenly became very ill a few weeks ago. He thought he had injured his back, but it was not getting better and a doctor's appointment and subsequent imaging revealed a spot on his liver.
Eventually, due to shallow breathing from the pain, he developed, we think, pneumonia and ended up in the hospital.
His radiologist had been referred the images showing a spot on his lung, but had failed to review them, so only at this point do they take a biopsy.
In addition to the spot on his lung, they found a mass blocking his urethra on one side, and they put in a stent.
A couple of days later he was allowed to go home. At this point, he seemed suddenly aged, and weak, but not grave.
The next day, this morning, he nearly died. He collapsed and became unresponsive. He appeared to be going into shock, as his BP was quite low. He is currently stabilized at the hospital, in and out of sleep, and receiving four antibiotics for sepsis.
However, the biopsy results came back showing not adenocarcinoma of the prostate, but small cell cancer instead. In addition, the lymph nodes by his kidney are affected.
We are not sure what percentage, if any, remains adenocarcinoma. We are also not sure if his weakness, fatigue, lack of appetite are caused by pneumonia, or if in fact is the cancer, and as such he may be very close to the end. At this point, they are taking cultures and excluding things.
His radiologist, after breaking the news, referred him to another doctor for the chemo phase. She mentioned the standard chemo protocol followed by immunological treatments.
I've seen case studies of good responses. Ive also seen the 1,2,5 year survival of men diagnosed 1973 to 2003 was 48,28,13%.
While I realize there are few studies on this rare type of PC, I wonder if it is likely those numbers have improved. What might they be now?
As I mentioned, Ive seen good case studies for immunotherapy. What are the odds that he responds at all?
Lastly, are there any other trials I should be monitoring?
So sorry to hear about your Father. That’s dreadfully difficult to cope with. I’m not medically qualified to comment on his treatment/condition but I think it’s safe to say that any historical survival rates are pretty out of date given that treatments have advanced so much in recent years. I was diagnosed stage 4 in May 2017 and a specialist that I was chatting to told me that if I’d been diagnosed 10 years earlier I’d probably have been dead inside 2 years. Well, here I am 3 years on and doing okay for now at least.
Thanks Tony. Good luck to you as well.
Yes you are not alone with not knowing about the need for men to have regular check ups. That combined with the fact that so many still believe that prostate caner is not serious does not help.
I am aware of some GP'swho tell men a PSA test is not worth it because it is not accurate. And they then ask men if they want to take a pass on the digital exam. In my opinion the answer is to take a pass and visit a urologist for the digital.
A urologist is far more aware of what to look for and does understand that the casual digital often performed by GPs can miss irregularities on the back part of the gland. In my own case the GP detected nothing - a week later the urologist found a lump embedded deeper in the prostate.
Best thing now is stay on top of it and do not look back at what you could have done - focus now on today and the future. Dennis(ProstateCanner.net Team)
Things are changing so fast in the prostate cancer treatment arena that the stats we see today are out of date - A bit of advice I give to newly diagnosed is - stay off the general internet and look for sites like this for information -
All any of us can do is relax and realize we are living with a chronic condition and hopefully we will be here long to see the benefits of modern medicine in our lifetimes - After that all the worry in the world is not going to do any of us much good.
Dennis (ProsateCancer.net Team)
Unfortunately we are all different and as such we all respond differently to this disease. It is in my opinion almost impossible to predict the future when it comes to prostate cancer and its impact.
Personally I had a high Gleason in 2013 and had surgery to "cure it" since it was declared fully contained. Just 2 years later it was back and in 2018 a combination of Lupron along with 40 radiation treatments appears to have it under control.
Out of the blue this past summer following a trip the emergency room while on vacation I learn that the discomfort I was experiencing (chest pain) was a rapid growth form of non-Hodgkins Lymphoma. Was it do to the radiation? Who knows. My best advice is to take it one day at a time, listen to your MDs and do some research into clinical trials.
Your hospital may have a contact with a list of clinical trials. Its not easy - but hang in there. We all need to advocate for ourselves these days.
Dennis(ProstateCancer.net Team)
Hi
, We posted your questions to our facebook group and one of our community advocates responded there. I wanted to share his response with you, to make sure you saw it:
Len: "So sorry to hear your father has small cell carcinoma of the prostate. First, I strongly suggest you read what the National Center for Biotechnology Information (NCBI) has to say about small cell carcinoma (SCC) of the prostate at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4339095/...
Second, if it were me, I would only go to a teaching hospital (they’re part of major universities (I had my prostatectomy and 2 years later radiation of the prostate bed due to a positive PSA plus 2 open heart surgeries to replace and re-replace my aortic valve at the University of Pennsylvania’s medical center.I couldn’t have had better results.)) Third, read about AURKA (Aurora Kinase A) amplified prostate cancer in the NCBI article. The first thing I’d do is to DEMAND he be tested NOW to see if he has AURKA prostate cancer, and if he does, demand he be treated with AURKA inhibitors ASAP. All the best to you and your dad. Len Smith ProstateCancer.net Moderator"We send you and your family our best. Please keep us posted. We are thinking of you all <3
Amylyn (Community Manager)
Hi
, Thanks so much for that info, and for sharing it with the facebook group. I was unable to find the response you cited in the prostatecancer.net group on FB, but I suspect the post is not public. I actually prefer that, just for privacy reasons, but it also means I'm not able to respond to _ @Len _ directly, so I'll do it here (if that works?).
First, I'd like to share some good news. As pops promised, he started improving once he got home. He said he didn't want to die in the hospital, and though the thought freaked us out, we acquiesced to his wishes and got him home on basically a stretcher, two weeks ago today.
The first thing he did was make sure we offered the folks who carried him in a glass of something on the way out, in typical style, and the next thing he did is not only to outlive the highest life expectancy expectation I received from any of his doctors, but also he continues to regain function, relatively rapidly.
I've learned of the Karlofsky Performance Scale, and I would estimate he was about 10 out of 100 when he was discharged. I might be overstating that as the head nurse informed my mother that he may not survive the trip home. Around this point, I was writing my original post. We also added a corticosteroid and CBD/THC in the same 24 hour period.
Since then he has consistently and unequivocally stated his wish to live more, but his oncologist has stated that he must be at a performance level of 60 for immunotherapy, which probably won't work all that well, and ideally, he should be at 70 for traditional platinum based chemo which probably will work, with (according to Onc) has a 50% chance of killing him.
The next day he seemed to improve for the first time in the previous two weeks. His oncologist suggested it was the corticosteroid, or the THC/CBD, both of which we suggested/sought.
I would say he is at a 50 of performance now, two weeks later.
I suspect -- though I cannot prove it, and am definitely not sure -- that by the hospital not discontinuing his hypertension medication upon discharge, despite all the weight he had lost over the last few weeks of symptoms onset led to some sort of hypotensive crisis, which may have harmed to some extent his already weakened body and brain.
@Len,
With respect to AUKRA inhibitors, they sound very exciting, but from what I've researched, there are 3 of them, it's been about 2 years since one was in trials. That trial was stopped due to side effects (though I think it was in just one patient), so I'm not sure that at 50/100 performance he would meet the inclusion criteria for a trial, even if another one has been started up.
Am I misreading something here? Anything we can do to treat his cancer would be amazing.
I asked nicely if he could be tested for AUKRA now, and be placed in a trial. Her response was that AUKRA inhibitors are partly theoretical and partly clinical, and he must be healthy enough to take them, anyway. I have not really pushed back on testing yet, simply because I have not found a medication or trial that is available.
Per Wikipedia: "So far three Aurora-kinase inhibitors have been described: ZM447439,[12] hesperadin[13][14] and VX-680. The last is in advanced stages (Phase II clinical trial) of a joint drug development by Vertex Pharmaceuticals's VX-680 (Sausville, 234, last posted on 12/18/06) and Merck & Co.,[15] although the Phase II clinical trial was suspended in November, 2007 due to QT prolongation observed in one patient in Phase I trial."
https://en.wikipedia.org/wiki/Aurora_inhibitor
Thanks for the reply.
It looks like I responded to the thread instead of your post. Please see my response when you have a moment.
