I am writing a book

I am writing a book about PC for new guys. All monies will be donated to PC research. What is one thing you wish you knew earlier in your journey? Thanks Denis

Can't just limit to 1. I wish I knew about this site and ustoo.org and Heathunlocked.com i.e. support sites with lots of information. I could have learned about bone scans and had one done before I had surgery.

My diagnosing Uro who (literally) tried to "hustle" me into surgery - - under his scalpel, of course. Never so much as mentioned the alternative of radiation (which I ended up having; albeit with a different MD).

When I told him I was leaning towards radiation, all of a sudden he told me that his group offered radiation at anther location. An MD pal of mine opined that the original Uro would probable "get a cut" of the radiation fee(s) from his employer.

Professionalism? HA! Felt like a used car dealer in a doctor's tunic. I wouldn't go back to this guy for a bloody enema!

To say that left a foul taste in my mouth is an understatement!

NJ Fred

i wish i would have paid more attention to the importance of PSA tests

I so wish I hadn't been trusting of the USPSTF.

When I was diagnosed over 10 years ago, there was less info online, so I relied to books and doctors.

None of the books I read or doctors I talked to reported that surgery would result in a shorter erection. I might have still chosen surgery, but it would have been good to know.

More practical advice: have a pillow to sit on during the ride home from the hospital after surgery.

I wish the doctors where more upfront on the side effects.

The importance of seeking out and assembling a coordinated medical TEAM, and realizing the importance of being an integral part of that team, by being your own advocate, once you begin finding your way after diagnosis.

Beyond that ... the importance of REACHING OUT.

Family and friends are important, beyond words, but finding a cancer COMRADE can also be invaluable ... you need someone who understands, because they have walked the same path.

The camaraderie and fellowship and kinship found here is a shining example of that ...

The power of camaraderie! Keep reaching out!
C-Y-C-L-O-N-E ~ # Iowa State University

I wish my Urologist would have been more informative.
He basically just gave me a few brochures.
He did not talk to me about what the gleason score meant ( I was a G8 at biopsy).
I'd like to have been pointed at support groups or sites.
I found this one on my own.
Everything I k now about PCa is from self education or from Healingwell.
I wish he would have talked to me about the side effects of treatment especially ADT, and long term ADT.
It would have been really nice to have been given a list of 10/20 things to know or ask about PCa.

Don't get me wrong, he is very nice guy, a guy's guy. We talked about him elk hunting in Colorado. But I needed to hear more about PCa than Elk hunting.
He is also a great surgeon (da Vinci), MD Anderson said he did a really good job.

Way to go Denis! Big one for me is to understand how Finasteride effects PSA. My GP wasn't taking into account that my PSA in the 1-2 range should have been doubled due 20 years of finasteride use. Should have had a biopsy much earlier.

I wish I understood how prostatitis can make your PSA rise a lot faster than prostate cancer.

In January 2017 my PSA was 5.0 and three months later it had jumped to 7.1. I was diagnosed with GS 8 in the fall, but just before my radiation treatment started my PSA had fallen to 5.2.

So, in under a year my PSA rose by only 0.2.

During the summer of 2017 I thought I was 'a dead man walking'.

I know a lot of guys are willing talk about ED; but, I have several close friends and a couple of relatives that have had prostatectomy that have been comfortable enough to share the fact that they experienced climacturia following surgery. It seems to be a more common side effect than most men wish to talk about or share. One said although he worried about having an erection again he never thought he’d be using a rubber.

Denis,

I think a huge key point would be to tell men (and I'm assuming you're writing for the men) to let themselves be vulnerable and acknowledge that PC is bigger than they are. To not automatically do what their doctor tells them to do, on the doctor's schedule.

I think part of the reason PC is, in many ways, an invisible disease is because we're MEN. Men don't have problems. They certainly don't share them publicly. We suffer in private, and in silence. Encouraging men to stop doing that, and to bind with other men who are in it with them is a huge thing.

This is about more than doing research, and weighing choices. It's a fundamental part of western maleness. And PC strikes at the heart of our maleness. It's not a mistake that (anybody besides me remember) back in the day Reader's Digest ran a series of articles over several years called "I am Joe's ____". The one for the prostate was called "I am Joe's Man Gland". In many ways, our prostates define us as MEN. Having it fail, having to end up on Lupron for years, or having lifetime ED, or lifetime incontinence messes with our identification.

Address THAT, my friend, and you will have done a major service.