PCa is not the good cancer. A rant.

Yes, Prostate Cancer (PCa) has a 90% cure rate. But at what cost? When I was diagnosed nearly 7 years ago, I did a lot of research and learned that if there was an autopsy performed on every man that died, 95% of us would have PCa. So naturally I thought, hey, we'll get this knocked out, and I'll be good to go. I sure didn't think that after I was diagnosed with lung cancer one year later. That was a real kick in the crotch. I had CT scans with contrast, bi-annually for two years. My PSA was checked at each scan, it was undetectable until the next terrifying scan. The two year mark for lung cancer was huge, it came back clear, now I only have an annual scan without contrast, piece of cake. Not so fast, my psa became detectable. I was instructed to check my psa every 3 or 4 months. I never thought that this little test could be more terrifying than the lung scans. I was wrong. More research taught me that there are stats, a lot more stats. This is like playing black jack with your health. Does the dealer draw a high card and bust, or do I get lucky with the PSA going from a .3, to a 3.3 , back to a 1.2, or maybe back to undetectable???? Do I splits the 7's, or do I hope for that 3rd 7? Do I have salvage radiation, that can screw up my bowels (or whatever else), or do I start ADT? Perhaps I'll get lucky, and get to feel lousy longer, I don't know?

My primary care doctor says my cholesterol is too high........so!

Yeah, that good cancer kills more American men every year than every other cancer except lung cancer.

I joined the PCa club in November and thought, no not again. In 2001, I heard the words you have a benign brain tumor (which is fatal by position) - it grows and then paralyzes you. Until 1975, surgery carried a death sentence. I wasn't happy. It too was slow growing.
I flew from West Coast to the East, 3 different surgical approaches were offered, each with serious side effects and 4 different radiation protocols, none with more than a 3 year history. You lose hearing, you get tinnitus for the rest of your life, but treatment screws up your appearance, ... the video of the surgery where they retracted your brain out of the way to allow access to the tumor found me at the edge of sanity. I did the research, every article ever written, went to conferences and decided 9 or 9 MDs were wrong. My risk assessment said monitor this thing, (MRI every 6 months for 3 years, then 8 months, then 12 .. and it never grew. 19 years later, we have a truce. The noise is ever present and will never go away. And now, here we go again. The decision isn't one one moment in time, but will likely cause a chain of events that will color the next decade ... and I wonder if it is possible to have the resilience to deal with it all.... I have a Gleason 8 and now booked for surgery. Pelvic lymph nodes coming out, although I read there are mixed views of the benefit of that. Does our doctor have the same risk tolerance as I do? 20% chance of EBRT down the road. Perhaps we can take strength from others who slug it out and make it to the next day.

Pgjs..if you are referring to tininnitus....lf you are going to cherry pick symptoms...why not cherry pick them in a positive light...19 years?? wow/////////////////I have a hard time sympathizing with the past...but alas...I still find it difficult to believe in the heart of hearts folks don't see exacaticcaly what I am referring to...nope not gonna believe it...its way to dark for me...not even a whisper of a spark there..

Yea...Im still here...get over it and use the ignore button...that's why its there...and no rubber necking...it just adds to perceived pain.... I mean who in their later years does not have tininitus??? or even benign positional vertigo??? its called aging...be glad you qualify...

That I am not an ostrich....I am a walrus... now is the time the walrus said to speak of many things of shoes and ships and sealing wax of cabbages and kings of why the sea is boiling hot and whether pigs have wings...

My answer to you are the first 6 words...the rest was a bit of whimsy and kismet under a twig of mistletoe...not perceived...tho connection received on a whisp of flimsy...

There...a gift for you 10drum...for a spirit...misperceived...now realized

PJS1952 said...
.....I did the research, every article ever written, went to conferences and decided 9 of 9 MDs were wrong........Does our doctor have the same risk tolerance as I do? 20% chance of EBRT down the road.....

You are a fortunate guy. 9 out of 9 wrong is in my experience about the same for urologists, radiologists and oncologists. Doctors neither identify with our risk tolerances, nor our desire for quality of life, when it interferes with them plying their trade aggressively, IMO.

Truck on, the minimalist approach most doctors and most here don't expound, has much merit, as you're discovered in the past.

There are so many ways of looking at this.

If someone had to choose between no cancer, an “average” case of prostate cancer, an “average“. case of pancreatic cancer, the answer I think would be universal. No one wants cancer, and the “average” case of prostrate cancer is probably a 3+3 or a 3+4, which has a good prognosis on “average”. The “average” case of pancreatic cancer has a dreadful prognosis. This is what results in people saying prostate cancer is a good cancer.

But we don’t live our life in “averages”. People die of prostate cancer, people live with pancreatic cancer. The number of people that die of prostate cancer surpasses the number of people that die of pancreatic cancer because it’s more prevalent. Getting prostate cancer is a kick in the guts. The PSA testing, treatments, this forum shows how cruel this disease can be.

It’s easy for the uninformed to make well meaning comments to newly diagnosed PCa patients. It’s easy for each PCa patient on their own lonely journey to lose sight of the journey of other people with prostate cancer including people with other cancers such as pancreatic cancer. That’s why this forum is so important, for community, to know you are not alone and to speak to people that understand.

An

Danny Aiello dead pancreatic cancer....RIP...one of the great ones

Not to side track. Can anyone chime in on my question. I has a 16 core biopsy all clear except one which was an ASAP cell. Does this mean I will in fact develop prostate cancer? I had another 16 core biopsy two months later at the request of my Urologist and all were neg (clear) it's been eight years now and I have not had problems? Any suggestions.

runnerf said...
Not to side track. Can anyone chime in on my question. I has a 16 core biopsy all clear except one which was an ASAP cell. Does this mean I will in fact develop prostate cancer? I had another 16 core biopsy two months later at the request of my Urologist and all were neg (clear) it's been eight years now and I have not had problems? Any suggestions.

Hi Runnerf. The question I'll ask is What has been your PSA history the past 8 years? I would think that you would have had imaging or additional biopsies if your PSA trend was of concern. Are you being followed by a urologist? In any case, here are links to recent papers on your question:

Relationship between prostate cancer and atypical small acinar proliferation [2018]

"CONCLUSION
In our center, prostatic adenocarcinoma was detected in 34% of the follow-up biopsies of ASAP-diagnosed cases in the first biopsies. In 38% of cases, cancer localization and ASAP are in different parts. Consistently with the literature, this situation shows that recurrent biopsies in ASAP cases and biopsies performed from different localizations are significant in catching malign cases"

CLINICOPATHOLOGIC IMPLICATIONS OF ATYPICAL SMALL ACINAR PROLIFERATION (ASAP) IN THE ERA OF ACTIVE SURVEILLANCE [2019]

"CONCLUSIONS:
Approximately 75% of patients with ASAP show either no cancer or active surveillance-eligible disease in this cohort, with implications for the work-up of atypical foci. As the overwhelming majority of patients who showed GS ≥7 cancer on subsequent biopsy had dominant anterior tumors at RP, increased attention to the anterior prostate should be a routine part of the management of patients with an ASAP diagnosis."

No such thing as a “little” cancer, much less a “good” cancer. That said, there are two fortunate tools available for treating PCa patients that are absent with other cancers.

The first is PSA. Properly understood, PSA is an invaluable early warning system that cancer is present. Moreover, it is a great proxy for judging the effectiveness of therapies and measuring disease progression, or hopefully lack there of. Many cancers are very hard to diagnose, such as pancreatic cancer. Prior to PSA, the first sign of trouble was often when a man experienced excruciating pain — too late to do much of anything. Also, PSA tests are quick and cheap — those words don’t often come up when describing American medicine.

The second unique tool for treating PCa is what I think of as “targeted starvation” of malignant cells. Traditional cancer therapies come down to cut, poison, or burn. The panoply of current ADT therapies gives PCa patients a chance to selectively starve the bad actors. This is not to minimize the profound SE of ADT therapies, but I would think that cancer patients facing grim lung, colon, or breast
cancer outlooks would count therapies that might selectively “starve” their diseases as near miraculous.

No there are no good cancers and no miracles. But we PCa patients are fortunate to have access to two powerful tools that are not available to other cancer patients. Best wishes to all.

NewspaperLover

mattam said...
"This is not to minimize the profound SE of ADT therapies, but I would think that cancer patients facing grim lung, colon, or breast
cancer outlooks would count therapies that might selectively “starve” their diseases as near miraculous."

Exactly, Newspaper lover!

As time goes on I sense the value of ADT use with RT is being more and more questioned by PCa practitioners. But for palliative guys, ADT is about the only thing standing between us and death. ADT can be tough, but if didn't exist to control my cancer I would sure be wishing something did.

By coincidence I asked my uro about the recent findings about ADT and mental decline and dementia. He pointed out that ADT can add 12 or more months of life -- in other words, if it's needed, it's needed. Immuno- or chemo- alone are often not enough for mPCa.

Djin