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

hopeful and optimistic said:

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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

 

 

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.

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 optimistic said:

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My thoughts and prayers are with your Father, and family

Stay strong

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

Max Former Hodgkins Stage 3 said:

Diagnosis

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.

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.