So much uncertainty: How do you manage it?

"Why am I surviving Gleason 9 and they're gone in a moment? "

They had much more aggressive cancer : (.

PC even in it's most aggressive form takes years to kill a patient, especially with today's numerous treatment options while many other cancers give a person just few months (like pancreatic) or a year or two (like lung).

Life can be cut short in many, many other ways and it is better not to dwell on those kind of thoughts - the only thing that is predictable is that life events are - unpredictable 😉.

Two people can have same diagnosis of Gleason 9 aggressive even at same time and age but be far off in a linear graph. One might have had subtle symptoms for years (a friend of mine), whose GP never had given him a PSA test. He finally ends up in an ER room for extreme GI pain and some other symptoms, blood work finds his PSA in the high hundreds and scans that his prostate cancer has metastasized to his bones. He passed in two years. Now the other Gleason 9 is diagnosed early on same age with a lot of treatment options. It’s not that they survived the same circumstances as you. I have mentioned before that most non patients when they hear prostate cancer, it is all one vanilla flavor, everyone is same. I hear people often mention about someone having it, all you can do is express your concern’s. You don’t start asking Gleason grade, decipher, spread, biopsy details intraductal, cribriform, margins, perineul invasion, etc. That is all our terminology to us that we can share with others on the board that understand that language that many others don’t. It’s like the hereditary factors in prostate, breast, heart disease and so many other factors that also play a role not only in person’s cancer or disease but success in treatment when caught early. I would agree not to dwell , life turns on a dime.

I m in your shoes asking the same questions. Gleason 9 in Feb. of 2022. <.02 today PSA. Do this: exercise, lift weights, treadmill time, drink green tea, avoid beer, eat white button mushrooms, do arm/ leg stretches: resistance trng. S this worked for me. I m not a Marlboro man on a horse either.

I woke up this morning. That makes for a pretty damn good day so far. And...that's about as far ahead as I think about it. Much better to enjoy the now instead of letting a bunch of crap rent space in your head.

I agree that the uncertainty is a big issue. Mine has been 6 years with undetectable PSA but who knows. As far as why me or why is mine different , I dont think about that much. We are all so different and everything in your life can be different. This group is a tiny subset of those that have or had it. I worked out at the gym with two guys. I was telling them I was diagnosed with prostate cancer. One guy had removal and no issues. One guy had radiation and no issues. You have no idea whether one guy has a dozen other conditions. Whether they ever took care of themselves. Where it decided to attach. I have a friend whose psa is 34. He refuses to have it looked at. I guess we just deal with the uncertainty. tackle what problems come up.

The way I look at it is that uncertainty is an integral part of everyday life. From the moment I get up in the morning to the moment that I lay down to sleep, uncertainty is constant.

For me, the key factor in all those questions - (What will the next test show? Did the radiation + ADT succeed? Will it come back?) - is whether or not I did the best I could with the information I had available at the time.

Everyday there are risky uncertainties I take including: driving my car, walking near traffic, cooking with hot items, using stairs,….. for which I minimize risk of serious outcomes with precautions like: wearing my seat belt, crosswalk safety, oven mitts, and handrails.

I took precautions for my prostate cancer treatments as well, and have similar expectations of positive outcome. I was diagnosed with prostate cancer in April 2012, and started treatments in April 2021…..and here I am at 71y, still vertical. My older brother was diagnosed with pancreatic cancer in early August 2024; he died 2-1/2 months later at 74y on 29 October 2024. There is no “why.”

I graduated high school in 1973. At our 50th high school reunion I found out that 25% of our graduating class had already passed away. There is no “why.”

I don't feel bad about surviving when the others have not - it happens. There is no “why.”

As for uncertainty, to rephrase an old quote - “Uncertainty smiles at us all. All a man can do is smile back.”

Personally, the uncertainty posed by deciding on which treatment to choose is mind numbing. The emotional turmoil and then the second guessing in the aftermath if things don't go as hoped wracks the brain and won’t let go.

I did Cryogenic therapy for a Gleason 3-4 six years ago. It kept mine at bay. Now with a Gleason 7 I’m on LUPRON therapy second month. The hot flashes have been rough, and about to start radiation.

..."The biggest challenge of this journey for me has been the uncertainty. What will the next test show? Did the surgery succeed? Did the radiation get the rest of it? When is it coming back?"

The short answer, you don't know, nor does your medial team.

The best you and they can do is use the tools in the kit bag such as imaging, labs, to determine where you are in your journey.

I had a very "successful" surgery, at least my pathology report and surgeon said...me, I' thinking the Mx in the staging means they didn't know for sure it hadn't metastasized. The MSKCC nomogram said there was a 30% chance it would come back. Those are good odds, 70% it would not...

It did.

That was my first ah shi...moment.

Next one, I argued because of my high risk clinical data, GS, GG, time to BCR, Mayo's data said I should include the whole pelvic lymph node system in the radiation treatment plan and add short term systemic therapy. It wasn't mainstream clinical practice nor in the NCCN guidelines but it sure screamed to me, "do it!" My medical team dismissed the idea, not SOC, not in the NCCN guidelines...

90 days after completing SRT to the prostate bed only, I had my 2nd ah shi...moment when my radiologist turned and said "Kevin, you may have been right, SRT failed, your PSA has more than doubled, from .3 to .7.

Now comes the acceptance part, you are not likely going to cure this but you may be able to manage it, live a long life and die of something else.

Once you break through that barrier, the worrying tends to stop,

My focus shifted to management, I put aside terms and definitions like cure and overall survival, focused on terms like progression free survival and radiographic progression free survival. I looked at treatment for defined periods with de-intensification criteria and then an active monitoring plan while off treatment, frequency and type of jabs, consults, clinical criteria for imaging ( I have rapid PSADT and PSAV so we can image earlier). Then, informed by the clinical data, we decide on treatment, de-intensification...kind of like the "wash, rinse, repeat...!"

I changed my horizon too, initially, being diagnosed at 57, we thought in terms of 10-15 years. Now we ask, will this work for the next 3-5 years? If so, great, likely something in the research pipeline will be in mainstream clinical practice and we can go another 3-5 years.

I do look for different side effect profiles in determining which agents to use for systemic therapy, Lupron vs Orgovyx, Nubequa vs Xtandi for an ARI...same for radiation.

I have lived a lot these last 12+ years. Both daughter have graduated from colleges, living good lives with significant others in them. Wife and I celebrated our 36th anniversary last year. We've done vacations to Iceland, Utah's Big 5, the Oregon Coast...gone to Bruce Springsteen, Eagles, Billy Joel, Willie Nelson concerts, seen Hamilton, going to see Wicked in August, skied every year in Colorado with friends, ridden the Garmin Unbound for six years now with one of my daughters and my sister....

My Chiefs have had quite the run, enjoy watching my Jayhawks, we just had a fantastic time with the World Cup here in Kansas City...

So, yeah, initially I worried like you (and we all did) then, I didn't. You'll get there too.

Kevin

Hi Kevin, it looks like I am following your steps — had surgery at 56, I'm 59 now. Exact same pathology as yours, same Gleason; I will just need to add some cribriform and ductal pattern present. My post-RP pathology is much like yours, 10% of the prostate affected and clear on all fronts, no EPE, margins clear, nodes clear, pT2N0. Like you, I felt surgery was it, but two years later my PSA went up to 0.05, until the sh** moment came when I crossed 0.10. I went through SRT and 6 months of ADT, and just today I found out my SRT must have failed, since my PSA is at 0.12. Seeing your chart really helped me and encouraged me to just keep being in control and not let this sucker get out of hand and beat me. I see you patiently waited until you were able to see where the foci was and treat it. I am planning on doing the same. I am being treated at Mayo in Jacksonville. How did you create that graph? It's awesome — I think every PC patient should have one. Thanks a lot for uploading it; it really helped me a lot.