That's a good question...

At the time, the call from my urologist floored me, literally. I was 57, both daughters in high school. When we met for a consult about treatment, he didn't help when as we walked to the scheduling desk for surgery, he said "Kevin, that's a pretty aggressive cancer,,!" To the nurse, he said "this is Kevin, he's NDC..." I learned that was "newly diagnosed cancer!"

I began to settle down, albeit still unsettled after the PET/CT came back negative for any activity outside the prostate, I met with the surgeon who explained he would endeavor to spare the nerves. I said if you have to take them because you find cancer there, just do it, life was my priority.

After the surgery, when reviewing the pathology report and his notes, my surgeon said in not so many words, I was cured, though he did not use the word. I'm thinking T2CNoMX, looking at the Mx and thinking "they don't know if it's spread outside the prostate...!

Now comes the labs and consults every three months and the "prostate specific anxiety test! For the first five, no issues, < .1. The 6th, he looks at his screen, hesitates, then turns and leads with "this doesn't mean your PCa is back, it's .2. So now, we're back to 23 Jan 2014 and the phone call, floors me!

Now I begin to inform myself, reading literature (aka, research). I learn about SRT, discover the nomograms at MSKCC, discover that data from Mayo and clinical trials indicate with my clinical data, often BCR has spread to the PLNs and a treatment decision should consider including the PLNs and short-term systemic therapy.

I am beginning to feel that I am in charge, I am attacking my PCa, going for the gold ring (from my childhood, the merry go round where a gold ring meant a free ride), the cure. My medical team dashes that, dismissing the idea, saying there is not long-term data to support it. I acquiesce. I do the SRT to the prostate bed, 90 days after, my radiologist hesitates, I know that hesitation , then turns and says "Kevin, the SRT did not work, your PSA has more than doubled, it's .7!"

That is my "aha" moment. Never again, I will decide my treatment in concert with my medical team, the shared decision making model, their expertise, training, education, experience count in my decision making but I make the best decision and they support it.

Still, it was not easy going in and getting the Lupron shot, it was not easy going into the infusion center, for whatever reason, going in for radiation treatments never bothered me. I hesitated when taking the loading dose of Orgovyx...

Not sure I'm answering your question so let me see if I can wrap this up...

I have given one reason, the transition to shared decision making where I make the decision.
Another may be attitude, I have always been a glass half full person, looking on the bright side.
Another may be my experience over 22 years in the Army where the focus is on accomplishing the mission,., gathering facts, determining course of actions, choosing the "best" one and having alternative plans in case that doesn't work.
I have "mitigated" the side effects through diet, exercise and managing stress.
There are statistics about 5 and 10 year survival.
The older I get the more I understand there are less days in front of me than behind me, so get on with life.

I think you do get to a point the longer you are on this journey where you just deal with it. I can tell you that by and large, I don't think about my PCa in a fretting sort of way. I ski every year with friends, my wife and I have taken vacations, Ring Road in Iceland, Big 5 in Utah, New England coast, Oregon Coast, Colorado in the Fall, Sedona...today I am playing pickleball with a group of dads from our kids days, this weekend I rode the Garmin Unbound 50, a gravel bike ride in the Flint Hills of Kansas near Emporia with my sister and daughter's boyfriend. I've attended concerts to watch Chicago, Billy Joel, the Eagles, enjoyed the recent successes of some of my favorite sports teams, the Royals, Chiefs and Jayhawks, watched my daughters graduate from high school, college and become grown adults...

Ok, you get the idea, you too likely have a lot of living to do, as the Nike slogan says, "just do it!"

Kevin

I was diagnosed in May of 2022, age 60. Surgery August of 2022. Naturally, I was concerned and confused. After the surgery I had a year of PSA tests every 3 months. Then a year of tests every 6 months. I asked for them every 4 months which the doctor agreed to. After 2 years I was given the ok for annual PSA testing but I opted for every 6 months. No BCR to date. PCa is in the back of my mind, but I am not focused on it like I was before treatment. After you receive your treatment I think you will think a lot less about it. What helps me is to try to control things that are in my control. Weight, exercise, and diet choices. I stopped all processed meats, no more snacking on cheese. Subbed nuts and fruit for that. But I still put cheese on pasta and such. You'll get through this just fine. Honestly, I feel healthy and not much different than before surgery.

Hi Johndavis60. You can check my profile for details but in short, I’m now 68. I had my RALP in Sept 2023. As others have said, all of our journeys are different yet I find this forum so helpful to me as I continue to navigate my own.

My two cents…

Certainly none of us chose this diagnosis. What we do get to choose, imo, is how we respond. I’m a recommitted believer in being positive. At the very least it allows us to “live a lot” in our subsequent days. At my lowest point I shared my doubts on this site and was encouraged to have faith in the choices I had made and to go “all in” on my positive attitude (thank you once again, Michael). It’s a chosen attitude - no, it’s a chosen way of life.

I too have lived a lot - and it’s only been less than 2 years since my RALP. I’ve laughed, held new grandkids, travelled with my beautiful wife, visited with friends from 50 years ago, etc. Yet, I still have the regular check-ups (so far, so good) that I suspect will be a regular thing for the rest of my life. My other choice was to be the guy with a black cloud over my head all the time. I don’t want to be with that guy.

You know to choose the best care you can find, do the best job of research and understanding you can do, and make the best decisions for yourself and your loved ones. That done, I recommend leaning into the process and anticipate the next good thing in your life. Hopefully, this is nothing more than a speed bump in your life - a very serious speed bump - that needn’t define you. You are right to be concerned for this is serious stuff. It’s okay to be irritable, angry, and moody - for a while.

Live your best life, brother! The alternative sucks imo.