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.

Sorry, Chip. It's terrible what we do to young men. Better to send the statesmen that start the wars. I hope you are well.

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The primary risk factor is age. How old are you?

It is possible to commit no mistakes and still err. That is life.

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Profile picture for Chip @chipe

For me I think it was my exposure to chemicals and burn pits after being drafted

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

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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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Profile picture for layingthegroundwork @layingthegroundwork

With one week to go before my surgery, I'm feeling surprisingly positive and at peace. A big part of that is because of the support, encouragement, and kindness I've received from all of you. Thank you. It truly means more than I can express.

Over the past few weeks, I've been trying a few things to help me stay calm and focused. My medical team sent me some resources on relaxation and mental preparation before surgery. One of the books they recommended was *Prepare for Surgery, Heal Faster* by Peggy Huddleston. I've found it helpful and reassuring.

I've also started drinking chamomile tea again. I bought a large bag months ago and hadn't used much of it. Now I'm making a big container with chamomile, honey, and ginger and sipping it throughout the day. I started yesterday and had one of the best nights of sleep I've had in quite a while.

Another thing that's helped me is listening to a YouTube recording based on Stoic principles. It's about four hours long and designed to be played while you're sleeping. Whether it was the tea, the book, the audio, or all of it together, I woke up feeling more rested and centered.

I know many of us here are dealing with our own health challenges, worries, and uncertainties. What helps one person may not help another, but I wanted to share a few things that have been helping me as I prepare for surgery. If even one of them brings someone else a little comfort, it will be worth sharing.

Here's the link:

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@layingthegroundwork You are doing an amazing job prepping for surgery. Mine was six weeks ago now. I went a different way....I spent a lot of time prepping all the supplies and as much information on side effects and the rest.

You prepped your mind. Thinking that was brilliant.

You'll do great with your surgery. Recovery takes some time, but just be patient. You got this.

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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
I always thought that having family have it doesn’t mean it’s real likely for me to get it, but somewhat likely. Then one of the specialists at a convention mention that they found that if your father or close relative like that, had it, you have more than 100% higher chance of getting it. My father died of it and I got it at 62 because my mother gave me BRCA2. My brother got it at 77 because of my father, and not having BRCA2 he got it when he was older.

I ran into so many people at the nine meetings I go to every month, that have a parent or uncle or brother that had it and now they have it and their brothers have it. It’s frustrating they can’t find a genetic reason for this, Something specific like BRCA2. Some day they will find it, and then find a way to stop it.

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Profile picture for Jeff Marchi @jeffmarc

@rlpostrp
I always thought that having family have it doesn’t mean it’s real likely for me to get it, but somewhat likely. Then one of the specialists at a convention mention that they found that if your father or close relative like that, had it, you have more than 100% higher chance of getting it. My father died of it and I got it at 62 because my mother gave me BRCA2. My brother got it at 77 because of my father, and not having BRCA2 he got it when he was older.

I ran into so many people at the nine meetings I go to every month, that have a parent or uncle or brother that had it and now they have it and their brothers have it. It’s frustrating they can’t find a genetic reason for this, Something specific like BRCA2. Some day they will find it, and then find a way to stop it.

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I was quite relieved when I found I didn't have the BRCA1/2 mutation, not for my own sake (I was already stage 4b), but because it meant that my brothers and nephews (and now, grandson) didn't have an elevated chance of developing PCa. Our family has a history of breast and colon cancer, but never prostate cancer (as far as I'm aware, I'm the first).

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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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I thought about that often when I was diagnosed with Non-Hodgkins lymphoma. Why me? Recently, I had genetic tests done. Genetic testing indicated I inherited a gene mutation with a proclivity to cause several cancers including prostate cancer.

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My genetic testing showed no inherited likelihood of developing cancer, and except for one first cousin (who passed away a little over two years ago at 68, after it had spread to his throat), no one in my family on either side ever had prostate cancer.

Yet, here I am, and with a brother who has it as well, both diagnosed within a month of each other. 🤷‍♂️

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