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Trying to get perspectives on what comes next

Prostate Cancer | Last Active: May 2 1:36am | Replies (24)

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@kujhawk1978

Well, @gently, @jsh327 and others laid out a path to informing yourself with clinical data - MRI, Decipher, Genomic testing, PSMA PET CT scans, labs which provide PSAT and PSAV, other tests which can give you your Gleason Score and Grade Group...in order to make a decision so I'm not going to rehash that.

I'll addess you other question - "I'm a bit panicked at times as I still have images of my father coping with Myeloma (at 82) and the debilitating effects of chemo so I'm trying to keep things in perspective, and wondering what others have experienced with getting treatment and their physical recovery. "

When I received my diagnosis on 23 January 2014, a "day that will live in infamy" for me, I had my pity party, then picked myself up off the floor, panicked, then set about informing myself of what I was up against and what were my choices. I was a month short of 58, heck, when my urologist told me I had prostate cancer and asked if I had any questions, I was tempted to ask "what's a prostate...!?"

Understand the difference between you and you father, he was 82, you're 59, like ECOG 0, in far better condition to go through treatments.

Attached is my clinical history, 10+ years, surgery, SRT, triplet and now just finished doublet therapy.

Surgery, well, two weeks later I was lifting weights, playing basketball, swimming, although the weights were gradual, not starting at where I left off. I even travelled from Kansas City to Sant Louis a week after my surgery to watch my Jayhawks play in the first round of the NCAA March Madness, sadly, they lost...

Radiation, side effects, none. The only constraint with the first two was no travelling since I had to do daily treatments M-F with weekends off so no extended vacations, business trips....The last one was SBRT so only two weeks of no travelling.

Chemotherapy, well, usual side effects,loss of hair, metallic taste to everything, nails black and blue. Still, played basketball, lifted weights, rode my bike, I was able to travel to Las Vegas to watch my daughter play in her post season Mountain West basketball tournament, went to Death Valley, Hoover Dam, Red Rock Canyon...With the fourth treatment, fatigue hit hard so I moderated what I did. All the side effects went away when I completed my six cycles.

ADT, same, side effects, yes, fatigue, muscle and joint stiffness, damn hot flashes, Throughout my time on ADT I went to the gym, rode my bike, did the yard work, travelled - Ring Road in Iceland, Oregon - Crater Lake NP, Columbia River Valley,, skiing and hiking in Colorado, Great Sand Hill Crane Migration in Nebraska...

I've celebrated anniversaries, birthdays, holidays , graduations...

You say "I've been extremely active my entire life and have always had a clean diet..." same for me, the good news, that may put you in excellent position to "put up" with whatever treatment you decide.

My medical team says there are two ways you can mitigate the side effects of treatment,

What you can do - diet, exercise, manage stress

What they can do - medications for nausea, bone density loss, hot flashes....

So my message, you may be able to live with this...I am not downplaying the other side of the coin, the 27k or so who die each year of this, nor the ones who experience debilitating side effects, but, you are in a position where you may be able to better go though treatment, mitigate the side effects and live with it.

As I've said before, I've peeked behind the door of death by PCa, no thanx.

Kevin

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Replies to "Well, @gently, @jsh327 and others laid out a path to informing yourself with clinical data -..."

Thank you for your kind words and insightful feedback! This helped tremendously and I see we share similar interests in outdoor activities...such things are good for the soul as well as the body. Again, thanks for sharing your considerable journey.