Why Us?

Posted by layingthegroundwork @layingthegroundwork, Jun 4 10:13am

My question is simply why us? What did we do wrong? Smoking too much, drinking too much? Living too much? Sex too much? Premature birth? Environmental hazards? What is the link criteria that makes us more prone to this disease? Is there anything that we can do or should have done differently?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

My husband's parents did not have cancer of any kind (dad died at 83, mom at 92), nor did his uncles. The only person that had cancer was his aunt from mother's side and it was a stomach cancer - she was chain smoker, god rest her soul. So, no cancers in family till he got it : (((.

I blame environmental factors, living in the Bay Area (California) with so many semiconductors and superfunds all around (dumping grounds of the most toxic chemicals ) that were just leveled and built upon. Coming from Europe I never heard of "superfund" and started research only after multiple weird health issues started popping up with friends an family. Found out that we had superfund just 2 blocks behind our home development community which was cleaned just 10 years ago and guess what was built on that site after "cleaning" ???

HOSPITAL !!!!! (Kaiser)

Silicon Valley is among environmental scientists reffed to as "Cancer Valley" ...

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Profile picture for heavyphil @heavyphil

@chipe wasn’t there a big settlement with the US govt over that…is it still ongoing?
Phil

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@heavyphil It’s covered (as presumptive for prostate cancer) under the PACT Act now. So, any veteran who can show they were there at that time gets compensated.

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Profile picture for rlpostrp @rlpostrp

Like many/most chronic diseases, prostate cancer has a familial, genetic factor strongly at play. My maternal grandfather had it; my maternal uncle had it; my dad had it; and I "had/have" it. And, I am counseling my son to the fact that he may very well have it when he reaches middle age. I wrote "had/have" because despite having the radical prostatectomy like many/most of us, we have all learned that between imperfect surgical technique by our urologist, and despite radiation therapy/proton beam therapy, perhaps ADT and other pharmaceuticals, prostate cancer seems to come back for MANY of us. I literally read here in the Mayo blog two days ago, of a guy who was cancer-free for "25 years" post-RP surgery, and now his cancer has returned. It is really depressing to know that with the statistic of "1 in 8" men will get prostate cancer, it means that SEVEN OUT OF EIGHT MEN walking around will never get it, but we are the unlucky ONE in EIGHT that did get it. That sucks.

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@rlpostrp It’s said that only 15% of prostate cancers have an inherited genetic component. With your family history of prostate cancer, have you had a genetic (germline) test? There may be other factors involved.

Not just sons. The same gene mutations related to prostate cancer can be passed to daughters, increasing the risk for breast and other cancers, as well as other solid tumor cancers to any gender (or passed from mothers to either of them).

Prostate cancer is not unlike any other disease, illness, or injury in that there can be recurrence. Both surgery and external radiation for prostate cancer have about a 33% recurrence rate - statistically equivalent.

Fortunately, with the early screening that’s available, prostate cancer has one of the lowest mortality rates of all male cancers. (Attached is data that I pulled and charted from the American Cancer Society’s website.) For me that was comforting - once diagnosed, the chance of me dying from it was low. (Unlike what happened to my older brother in August 2024 - diagnosed with pancreatic cancer and died 2-1/2 months later.) I’m 14 years into my prostate cancer journey; I’m good with that.

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You can REDUCE your risk of certain bad things happening but never fully eliminate them. For example, people who don't smoke or work in smoky environments are less likely to get lung cancer but some still get it. I read that lots of sex prevents prostate cancer. It didn't work for me but maybe it worked for someone else. Who knows. A lot of us are taught that when bad things happen to us it's our own fault but that's not really the case.

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@brianjarvis ....Thank you...good information. Nice to see it in chart form, but sadly 32,250 men die of prostate cancer each year. I am going to look for more information that breaks that down: How many die within a year of diagnosis? Two years within diagnosis? Three years...?, etc. Like many charts, that 32,250 likely includes men who died after 10 - 20 years or more with prostate cancer, and others who never went to a doctor or had a PSA test, or DID, and did nothing about what was suddenly a "new" diagnosis that was already a Gleason 9, EPE to their seminal vesicles, and in their bones, and killed them within a year or less. Like Joe Biden...he was just diagnosed a little over a year ago with a Gleason 9 and the cancer is in his bones. I wonder how long he'll live? Or Scott Adams, creator of the Dilbert cartoon who died in January 2026, who the reports say that he announced that he was just diagnosed in May 2025 (died less than a year after diagnosis). He posted in social media that both Ivermectin and Fenbendazole did not work. He started taking Testosterone-blocking drugs which he had previously declined. That med reduced his PSA dramatically by 90%. Unfortunately, the cancer was already in his bones, and he had a bad outcome to radiation therapy: he became paralyzed below the waste...yet another reason why I would never do radiation therapy vs the safer Proton Beam therapy. Adams was in so much pain that he was making plans for assisted suicide. Long story short: that 32,500 men runs the entire range of newly diagnosed with advanced disease, to long-term survival with RP and other treatment, or...like my own father: men who did nothing and lived to the ripe old age of 99 years 10 months WITH prostate cancer. My maternal grandfather lived to 96 years old WITH prostate cancer. He had it a long time because I remember him going to get shots directly into the prostate (Lupron?) every three months or so when I was in college in the late 1970's, and he lived until 1992. It is a strange disease. Makes me wonder sometimes if, at 70 years old, I should have done nothing and rolled the dice to see how long I would live. At least I'd still have urinary continence and be sexually active.

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Profile picture for rlpostrp @rlpostrp

Yes indeed...irony...complete irony. I had a separate Genetic Screening at my local large medical center before I got my Decipher test results. The Genetic Screening told me that I had "zero" cancer genes, yet my Decipher Score was 50%. When I called to speak to Veracyte Labs in San Diego that does the Decipher test, I asked "what genes did they identify me as having?" They said they don't have identifiable genes to report...that the test is performed differently than I would expect. The PhD said that they couldn't help me with more specific information. There was no attitude or resistance...no desire to keep anything from me...she just explained that the way we all think the Decipher test is done, does not reveal identifiable genes that we have. So...THAT left me hugely confused. I asked Siri, and this is what I got for an answer:
"The Decipher Test focuses on genomic "classifiers" rather than specific gene mutations.
The Decipher Test is designed to assess the risk of prostate cancer progression by analyzing "gene expression patterns" rather than identifying specific genetic mutations." Here are some key points regarding its approach:

Genomic Classifier vs. Specific Genes
The test evaluates a 22-gene expression profile to generate a score that predicts "cancer behavior", rather than pinpointing individual gene mutations
.
This score helps in risk stratification and treatment decisions but does not provide detailed information about specific genetic alterations
.
Clinical Utility
The focus on gene expression allows for a broader understanding of tumor biology, which can be more relevant for treatment planning
.
While it does not report specific mutations, it can guide therapy decisions based on the overall risk assessment
.
Limitations
The test does not incorporate traditional factors like PSA levels or Gleason scores into its scoring system, which can lead to some confusion
.
It is important to consider additional genetic testing if specific mutations are of interest, especially for targeted therapies."

Well...is everyone thoroughly confused now?

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@rlpostrp Makes me glad I never had one! I just went with my own ‘gut’ feeling: hope for the best, plan for the worst and whatever happens, you’ve done your best.
Phil

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Profile picture for rlpostrp @rlpostrp

@brianjarvis ....Thank you...good information. Nice to see it in chart form, but sadly 32,250 men die of prostate cancer each year. I am going to look for more information that breaks that down: How many die within a year of diagnosis? Two years within diagnosis? Three years...?, etc. Like many charts, that 32,250 likely includes men who died after 10 - 20 years or more with prostate cancer, and others who never went to a doctor or had a PSA test, or DID, and did nothing about what was suddenly a "new" diagnosis that was already a Gleason 9, EPE to their seminal vesicles, and in their bones, and killed them within a year or less. Like Joe Biden...he was just diagnosed a little over a year ago with a Gleason 9 and the cancer is in his bones. I wonder how long he'll live? Or Scott Adams, creator of the Dilbert cartoon who died in January 2026, who the reports say that he announced that he was just diagnosed in May 2025 (died less than a year after diagnosis). He posted in social media that both Ivermectin and Fenbendazole did not work. He started taking Testosterone-blocking drugs which he had previously declined. That med reduced his PSA dramatically by 90%. Unfortunately, the cancer was already in his bones, and he had a bad outcome to radiation therapy: he became paralyzed below the waste...yet another reason why I would never do radiation therapy vs the safer Proton Beam therapy. Adams was in so much pain that he was making plans for assisted suicide. Long story short: that 32,500 men runs the entire range of newly diagnosed with advanced disease, to long-term survival with RP and other treatment, or...like my own father: men who did nothing and lived to the ripe old age of 99 years 10 months WITH prostate cancer. My maternal grandfather lived to 96 years old WITH prostate cancer. He had it a long time because I remember him going to get shots directly into the prostate (Lupron?) every three months or so when I was in college in the late 1970's, and he lived until 1992. It is a strange disease. Makes me wonder sometimes if, at 70 years old, I should have done nothing and rolled the dice to see how long I would live. At least I'd still have urinary continence and be sexually active.

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@rlpostrp Yes, between 32,000 - 35,000 men in the U.S. die of prostate cancer each year. But, that’s out of a very, very (very) large number diagnosed; that’s a very small % of a very large number - and most of those were probably de novo metastatic.

Data show that:
> For Stages 1, 2 & 3 - the Proportion who die of disease: <1% - 5%
> For Stage 4 - the Proportion who die of disease: 62% - 68%.

(For men who are in Stages 1-3, most of them will not die of the disease.)

Also, note that a true Gleason 6(3+3) does not metastasize (https://youtu.be/NV8QHzbgamI), therefore won’t kill you.

The prognosis is heavily in favor of those who get it diagnosed early; less optimal for those who choose to wait until later.

With Joe Biden, though he was diagnosed with a Gleason 9 and the cancer is in his bones - there’s no way to know when he had prostate cancer. They’ve kept his historical numbers close to the vest, (All we know is that he stopped getting PSA tests at about 70y.)

Scott Adams lived with a terminal prostate cancer diagnosis for about 8 months. He publicly revealed that he had metastatic prostate cancer—which had spread to his bones—in May 2025. (Again, best we know is that it was already metastatic at diagnosis.) He’s quoted as saying "I have the same cancer that Joe Biden has. I also have prostate cancer that has also spread to my bones, but I've had it longer than he's had it — well longer than he's admitted having it,"

When you say “….. that 32,500 men runs the entire range of newly diagnosed with advanced disease, to long-term survival….,” those “newly diagnosed with advanced disease” are more likely “late-stage diagnosis” rather than “early-stage diagnosis.”

They’ve been telling men about early screening for over 30 years; maybe one day more men will listen.

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I used to be an avid cyclist, thought nothing of riding 20-30 miles per day. Back then saddles were not as good as today and I had issues with Penile numbness when riding. It didn't take long to fade away after finishing a ride. I also had an STD in early 20's Chlamydia I think it was. I also had a couple bad prostate infections. I've always wondered if any or all of these might have contributed to my PC.

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I worked with Urologists for many years. The best and my favorite Doc once said about PC: If you live long enough you will either die with it or die from it." He went on to suggest if prostate autopsies were routinely done on senior males (no matter cause of death), most would have undiagnosed PC. So I think the question should be, "Why them?" Why do some (possibly a minority) dodge this bullet?

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Profile picture for im62at2024 @im62at2024

I used to be an avid cyclist, thought nothing of riding 20-30 miles per day. Back then saddles were not as good as today and I had issues with Penile numbness when riding. It didn't take long to fade away after finishing a ride. I also had an STD in early 20's Chlamydia I think it was. I also had a couple bad prostate infections. I've always wondered if any or all of these might have contributed to my PC.

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@im62at2024 I think a lot of those ideas have fallen out of favor, but they are always dredging up something or other.
They used to think that the STD Trichomoniasis caused it, but that has been debunked.
I get the whole bike riding thing - pressure, decreased circulation, etc., but for it to cause actual cancer I don’t think the studies support that idea…until one day they do🤷‍♂️
Phil

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