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Sudden severe illness as recurrent Stage 2 PC becomes Stage 4 Small Cell Carcinoma

FuriousGeorge
Posts: 5
Joined: Sep 2020

My father is an otherwise healthy 72 yo who has recurrent PCa after radiation.  As recently as August he seemed fine.  Also in August, his PSA levels were low, and imaging showed the cancer in a local lymph node was shrinking.

Then he began having back pain, which he beleived to be a strain but was acutually from a mass blocking is uterer.  Also, scans had shown something on his liver, which -- like we assume for the mass by his uterer -- is one of multiple Small Cell Carcinoma lesions.  Lastly, his lymph nodes by his kidney also show signs of metastasis.

His oncologist failed to review the imaging showing the lesion on the liver, so this was all discovered a week later, when he ended up at the ER due to repiratory distress.  The pain led to shallow breathing, which led to pneumonia and/or a partially collapsed lung.

After about a week in the hospital on IV antibiotics, and after having a stent put in his uterur, he returned home against recommendations.  He immediately seemed to get worse, and then a bit better, before nearly dieing the next day.  His blood pressure dropped to 60/40, he breathing became labored, he fell down and couldn't get up, became unresponsive, and was rushed to the ER, where, thakfully, he was stabilized with fluids.

Today, the next day, they found bacteria and white blood cells in his urine, and pending his cultures coming back, we now think he has sepsis and/or a UTI.

I beleive his original PCa remains hormone sensitive, but the prostatic SCC is the main concern now.  We are told chemo could give him 6 more months, and then we can try immune system-based therapies, as are used in SCC lung cancer, which may give him more time still.  One problem is that he needs to be clear of infection before starting, and another is that once the infection is cured we'ee told the cheno has a 50/50 chance of killing him.

What has me most concerned is how quickly he has become so sick and seemingly aged.  He went from a young looking otherwise healthy 73 year old to someone who could be in their 80s and very ill.  He has trouble even walking and keeping his balance.  His voice is weak, and even though at his first discharge he seemed somewhat stronger than when he arrived, and eventhough the pneumonia is better, his voice has not returned.  It's at the point where we almost welcome the news of possible infections, because otherwise it is the cancer making him this sick, and if he does not make improvements we fear he wont survive chemo.  He was better today than yesterday, but still worse than when he was discharged two days ago.

As I mentioned above, I'm reading about the current treatment options, but I'm wondering what experimental treatments may also be worth following at this stage, since there are no 3rd line treatments.  Also, any general advice would be much appreciated, especially as it relates to comforting him now, and helping him get stronger in order to prepare for treatment.

Prior to this, he was recently retired and living a great life.  He has so kuch to live for, and so many people who are not ready to let him go.

 

Thanks for reading.

hopeful and opt...
Posts: 2265
Joined: Apr 2009

I'm very sorry for the pain and anguish that your father and you are feeling. 

There are different doctors that treat prostate cancer patient. 

You want a medical oncologist , the very very best that you can find and afford. Here in Southern California there is a group Prostate Oncology Specialists headed by mark Schulz. The organization consists of three docs who only specializ in prostate cancer and are world renown. I just attended a virtual presentation by Nicholas Vogelzang of Las Vegas who presented a talk that he gave to urologists at ucla. His talk was very detailed and I found the content to be compleye and impressive. You may wish to view his talk on YouTube 2020 prostate cancer patient conference day 2 sept 12. He is also among the very best medical oncologists

pet scans image the body for PCa . There are various PET scans that use different contrasts to find spots, that might be zapped The best petscan available uses PSMA This pet scan to my knowledge is at ucla and UCSF. Unless your father is in a clinical trial the cost is 2700 Cornell in nyc uses a different contrast which they think is excelent. There may be some other institutions I don't know where your father lives

definately not an expert on chemotherapy bit high burden of disease with low psa calls for chemotherapy 

There is a book, the key to prostate cancer ...mark Schulz  where various potential drugs used in other cancers are discussed by Schulz. Basically this is one of the reasons that you want the very best to treat.

The above said, your father and his doctor  will have to make a decision on what treatments to pursue if any

Since PCa is more likely to happen in families if you are a male you will need to be monitored and since there is a correlation between PCa and breast if you are a female get those mamograms. Eat heart healthy

 

 

FuriousGeorge
Posts: 5
Joined: Sep 2020

Thanks for the reply, especially with respect to imaging.

Today he is complaining about pain throughout his torso when moving.  My mother says she thinks the cause is the cancer, not the stent or some infectious disease.  There's no way to be sure as we don't have culture results.

You mention that "high burden of disease with low psa calls for chemotherapy", and I've heard that small cell carcinoma responds great to chemo, albeit for a short time.  Unfortunately, the doctors want him clear of infection before starting chemo, but they haven't found any infection yet.  He isn't getting better, and I'm concerned that he will die rather than become well enough to start chemo.

Just hoping for a bit more time.

 

Clevelandguy
Posts: 591
Joined: Jun 2015

Hi George,

Sorry to hear about your fathers condition.  Sounds like he needs a coordinated team of doctors to sort out his most critical problems, get them stabilized and then move on to lesser problems.  I know if it was my Dad thats what I would do so you can get him stabilized. Need to priororitize the most critical first, get that under control then move on to the next.  Pneumonia sometimes takes a long time to get over and could very well impact his tolerance for other treatments.  Good luck...........

 

Dave 3+4

hopeful and opt...
Posts: 2265
Joined: Apr 2009

I wonder about the history of your father's condition 

what was his Gleason score on diagnosis, psa history , treatment history

has he had a bone scan or other diagnosis tests

has an attempt been made to suppress his testosterone production though hormone therapy.   What drugs

what is his testosterone level. Specifically is it <50  If the answer to both questions is yes then he is castrate resistant

forgot to mentio, with regard to the pet with PSMA contrast it is considered investigational and not covered by insurance; there are other ones ie axiom good, but not as good that are medicare covered

 

 

 

hopeful and opt...
Posts: 2265
Joined: Apr 2009

These slides are very detailed and complete 

Best

 

https://static1.squarespace.com/static/54c68ac6e4b06d2e36a4b8c9/t/5f5ce3e49e32a319f5269d03/1599923189117/PCRI-SLIDES-2020-FINAL.pdf

FuriousGeorge
Posts: 5
Joined: Sep 2020

Clevland, thanks for the reply.  I'm really hoping that there is some infection or other condition that they can clear up and he will regain enough of his strength to undergo treatment.

 

hopeful, 

He was diagnosed with PC five years ago.  He underwent radiation and went into remission.  His Gleason score is in the lower part of the high range, I beleve 7 or 8 maybe?  Last year his PSA levels began to increase, and imaging showed that he had some cancer in the local lymph nodes.  At this point he started hormonal therapy.

He was checked in February and August of this year, and seemed to be responding well.  Imaging showed the cancer in his lymph node shrinking, and his PSA and test levels were (and remain) very low.

However, he started complaining about back pain in late August, and thought he had strained it.  He went to a chiropractor, and when it got worse he thought the chiropractor had aggravated it.  Finally, he went to a back specialist, who suspected he was having spasms.  However, he also took some images, and they revealed a spot on his liver.  The images were forwarded to his oncologist, who did not review it for a week.  He finally reviewed it and ordered a biopsy when my dad ended up in the ER the first time, last week.

The pain was causing him to breath shallow, which led to pneumonia.  The biopsy results indicated his typical hormone sesitive PC had mutated (I'm not sure if largely or entirely), not to CRPC as one would expect, but instead to Extrapulmonary Small Cell Carcinoma, specifically Small Cell Carcinoma of the Prostate.  This happens less than 1% of the time, is aggressive just like the more common Small Cell Lung Cancer, and it does not respond to treratments for metastatic PC.  (He may have to continue hormone treatment, as most likely some of the cancer is still hormone sensitive PC.  I need to verify that.)  Subsequent imaging revealed a mass blocking the uterer as the likely source of the pain, several small masses in a "not so bad" part of the liver, and a spot on the lymph nodes behind his kidney.

The only silver lining is that it is typically very responsive to treatment, albeit usually only for 6 months, but some men go into full remission for even longer, and then they can try another round.  Then there are immunotherapies that, while they don't work for everyone and generally elicit a modest resposne when they do, sometimes provide very good results.  He is otherwise very healthy.  We aren't expecting a miracle, but we are really hoping for a little more time, at least.

Last week on Saturday, they put a stent in to alleviate the blocked uterer.  This week, he went home on Sunday, and -- as I mentioned above -- immediately started getting worse, and seemed to go into shock the next morning.  He became unresponsive and his blood pressure plumeted.  They got him back to the ER in time to stabilize him, but he just doesn't seem to be getting better, and we are not sure what is wrong.

At first they thought he had sepsis, but the blood cultures came back negative.  They aren't sure why he has such trouble breathing still, as they pneumonia seems gone, so they checked for blood clots today and found nothing.  The cancer does not seem to be affecting his liver function, based on the values of his bloodwork and the location of the "small" lesions.  His kidney is no longer blocked by the metastasis on his uterer (about 1.2 cm in size), but now he has pain in his abdomen instead of his back, whenever he moves.  Outside of all that, the only other metastasis they've found is in a lymph node by his kidney, which doesn't seem likely to cause such sudden and profound illness either, although I'm obviously not an expert.

He probably has some infection in his urinary tract, as there is blood, white blood cells, and bacteria in his urine.  That's it.  We are still awaiting urine cultures.

My mother is getting desperate.  I'm going to see him later.  They are continueing to check for problems.  Today, for the first time, I'm beginning to think that maybe it is just the cancer, and he will never be well enough for chemo.  If he continues to get worse, I can't see him being alive, let alone conscious much longer.  It just sucks in every way.

Thanks for the responses, cleveland and hopeful, and thanks for the link to the slides, hopeful.

hopeful and opt...
Posts: 2265
Joined: Apr 2009

My thoughts and prayers are with your Father, and family

Stay strong

FuriousGeorge
Posts: 5
Joined: Sep 2020

Thanks, hopeful.  Best wishes for you and yours as well.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

It seems quite possible, or even likely, that your fathers "SCC" may NOT be PCa in origin.   In other words, he now has an unrelated cancer at work.   As the other guys mentioned, he needs an expert medical oncologist at this point.  Verify with his doctors that in fact the SCC is PCa-based.  Only an expert biopsy read can determine this; it is NOT OK to assume that they are linked, for then the drugs administered are ill-suited and ineffective.

Liver and kidney diseases can destroy a person faster than most organs, with rapid deterioration.  

In general, Third Line therapy for PCa is Hormonal Therapy, (HT), which in most cases has good prognosis, with many men on HT living for years or even decades.

FuriousGeorge
Posts: 5
Joined: Sep 2020

Max,

Thanks for the reply.  He's had an oncologist for the radiation, and now he's switching to another for the chemo.  Both come from a cancer hospital in NYC with a generally good reputation.  We will be seeking a second opinion, in any case.

With respect to the origin of the cancer:  I don't know how they are so sure the SCC comes from his prostate based on the liver biopsy.  Perhaps the cells looked enough like "small cells" from a prostate to make that call.

His lungs are clear and he wasn't a smoker.  Also, for whatever it is worth, I've read that metastasis to the uterer is almost completely unheard of in "regular" PC.  Apparently, my dad's presentation isn't uncommon for the cancer.  From a case study "In approximately 50% of the cases, SCCP will reveal itself as a de novo malignancy at the time of diagnosis with pure malignant neuroendocrine cells. However, in the rest of the cases, it will present in the shadow of a previously diagnosed or concomitant prostate adenocarcinoma, with distinctly differentiated histological features supporting both types."

The doctors used the word mutated, but the difference is academic.  For all intents and purposes, he has 2 cancers, and based on his PSAs and August checkup, the "regular" one is probably still well controlled by the hormone therapy.

 

I saw him earlier.  He might not be worse than yesterday.  Considering they added oxycontin yet he was still coherent and awake, maybe he was a bit better.  Still, about a week ago, before he was discharged for a day, he walked four laps around the oncology ward, and today he wasn't close to being able to get out of bed on his own.  Three weeks before that, he was a healthy 72 year old.

He seems to be in a lot of pain if we try to move him at all, but just says his shoulder hurts when asked.  Hopefully, tomorrpw is better.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

A biopsy taken from anywhere, including of course the liver, if it has enough tissue, will tell expert pathologists exactly what they are dealing with.  Usually, this will include emergence pathway of the cancerous cells.

I agree with Vasco's post that a variety of things are possible, including that both have been present for some time.   And I agree with Cleveland that PCa virtually never takes an energetic man and puts him unable to get out of bed this fast.  No doubt they are studying his liver and kidney functions, which as I said last time, seems suspect.

VascodaGama's picture
VascodaGama
Posts: 3235
Joined: Nov 2010

Hi George,

I am thinking that, your dad's case as you report it above, could have had both types of prostate cancer, coexisting from the beginning, but the SCC was not diagnosed when the issue began 5 years ago. Small cell carcinoma and adenocarcinoma are differentiated by different staining and not all pathologists manage correctly to identify the SCC of the prostate.

I wonder about the symptoms your dad experienced 5 years ago. I am also curious on what made your dad choose radiation therapy over surgery at the initial treatment. Typically, doctors recommend radiation treatment (RT) when there is suspicion or evidence of spread. Surely many guys also are tempted to go through RT to avoid the nasty side effects caused in surgeries. If evidence was the fact then deficient diagnosis could have been blamed.

The spread of neuroendocrine prostate cancers (also called Small Cell Carcinoma) are similar to the descriptions you lay above. The Liver, Kidneys and Lymph nodes are affected. This type of cancer forms in squamous cells lining hollow organs like the urethra, bladder, ureters, the respiratory and digestive tracts, etc. Once formed at the prostate it spreads unnoticed as it produces low or zero levels of PSA. The Adenocarcinoma forms at epithelial tissues that surround the prostate gland, the vesicles and urethra. Adenocarcinomas tend to produce higher levels of PSA serum when very active.

As you comment, a biopsy of the liver tumour has verified and diagnosed the existing SCCPCa. This is not a good situation but you are aware of the facts. I hope you get good news from the second opinion.

In this link you can read a study of a case similar to your dad's; It is 7 years old but it got references to researchers involved in the treatment of this type of disease. You can take a copy of this article and discuss the matter with the doctor in your next meeting.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4246144/

Best wishes,

VGama

Clevelandguy
Posts: 591
Joined: Jun 2015

Hi George,

Your one statement that he was a healthy 72 yr. old three weeks ago now he cant get out of bed.  Does that sound like cancer to you?  My gut feel and Im no doctor is that maybe something else is causing his sudden downturn?  I did not think even metastatic cancer moved that fast.  Just a thought, maybe Im way off base.

Dave 3+4

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