Trying to get perspectives on what comes next

shep247: My take is you are on the right track. There are two prostate cancer paths many of us follow. One, is named Surprise, and the other Normal. Surprise means high numbers, somethings wrong, need to act quick. Normal means the numbers are watchable, we've caught it, no need to act quick, You my friend appear to be on the Normal path. I am happy for you and good work staying out in front of this.

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

Thanks for your wise words.

@shep247 Welcom to MCC. You are going to read a lot of informatino and get confusing. Really learn to asked questions of your R/O and urlogist. Then do research and second opinions.

A PSA score of 4 is right at normal. Anything above 4 is abnormal. It does nto mean cancer but if it continues to rise most likely is. Just remember that almost every man will get prostrate cancer if they lived long enough. Most are very slow growing but need treatment or monitoring.

What ever your decisions please consider getting second opinions, PSMA test (will show if cancer has spread), bone scan (will show if in bones) and most important Decipher test (it will show a more precise risk level of your prostrate cancer). If and when you have biopsie ensure, if possible, it is MRI/Fusion and done by an experience urologist surgeon.

A patient who has research, second opinions, best diagnosis test, is in a better position to decide what treatments are best for them. Remember we are all different, with different cancers, and what is best for one is not necessarily best for you.

Thanks for this information and your response! Definitely some things I didn't know about and will be looking into this dependent on what biopsy shows.

Thank you for the feedback and the details on the biopsy type! I will be looking into that, and, yes, I am definitely assembling a growing list of questions.

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.

Hey Shep,

Just throwing my 2 cents in here. As many have stated, the biopsy in combination with the completed MRI and decipher test will paint a clearer picture for you. I was diagnosed at 59 and just had my prostatectomy less than two weeks ago at 61. The worst part for me was trying to make a decision for treatment. I was completely stressed/overwhelmed and consumed with research.

I also had a PI-RADS 5 with a Gleeson score of 3+4. I was initially on AS but that changed obviously. I got 4 opinions before selecting surgery and am happy to say it was the right choice for me. The cancer was contained within my prostate even with the possibility of extra-capillary extension.

I had nerve sparing surgery due to getting one of the best Doctors in my area and my Lymph-nodes were clear. As many have stated here already, each one of our journeys with this lousy disease is different. Do your research, get multiple opinions with top Doctors, and stay connected with this group.

I truly hope you get all the answers and comfort you need going forward. best of luck to you.

Many thanks for your tremendous feedback! This has been helpful to mull over as I am getting my biopsy results back later this week and will know more. Thank you for sharing!

Shep247 - A lot of great advice already given, so I will be brief. If your biopsy comes back positive, please make sure you do thorough research on the best possible center of excellence and doctor to use for your treatment. I was diagnosed with PC (Gleason 7-4/3 PC) at 55. Based on my age, I opted for a radical prostatectomy. I am now 57, PSA has been undetectable, and good return of all body functions. I attribute my good results to taking the time to choose the best possible center of excellence & doctor for my treatment plan, following through with required therapy after the treatment, and God's grace.

Best of luck and I pray that your biopsy comes back showing no cancer!

Jim