3rd time around. Now stage IVb: What are my treatment options?

I was diagnosed in 2018. Gleason 9. Failed robotic surgery. Had regional Mets to lymph nodes. Did great with radiation and ADT. PSA went up a little to 0.4 and started taking Xtandi. Great response. Went in remission for 4 years. In may this year, a PSMA PET SCAN showed a 9 mm lymph node in paraortic area. Finished a 5 sessions radiation therapy last week. They did spot treatment .PSA was 1.1 prior to treatment. Getting a repeat PSA in august to assess response. I did not have bone, liver or lung Mets however. Wish you the best.

I was put on Xtandi pills 4 a day and Xgeva for bones a six week shot I have been back on Zolodex for 2 years Met is in L2 and T 10 11 of spine
Chemo not in my plan for a long time if ever

If the radiation in June 2019 was to the prostate bed only, i.e. SRT then doublet or triplet therapy - https://pubmed.ncbi.nlm.nih.gov/37055323/ may be something to do a literature search on and discuss with your medical team.

Your post provides some clinical data, GS and time to BCR after surgery. These two pieces of clinical history indicate high risk PCa which way warrant consideration of aggressive treatment. The other pieces of clinical data would be PSADT, PSAV, number and location of PLNs and final result of "something in your chest."

Attached is my clinical history. Similar to you GS 4+4, less than three years for BCR after what was a very "successful' surgery and subsequent pathology report. When you added my PSDAT and PSAV, well, triplet therapy it was! The difference may be the "something in your chest..."

The additional data about what the "something in my chest" along with the number and location of the PLNs lighting up in your scans is is the missing clinical data to help inform the groups assessment and feedback to you.

I would conjecture at this point as a layman, not a medical expert, you and your medical team may want to go the triplet route, ADT, an ARI, chemotherapy. If radiation is in play depending on the number and location of the PLNs, treatment of the entire PLNs should be a consideration.

Kevin

Thanks kevin. Question - what is your quality of life like?

Your clinical history shows cariac issues. Were these present before, have any connection with the cacner, or just part of getting older. The reason I ask is that I have heart issues and in sept 2021 had an ablation for afib that started in 2019. Since then have had a number of stents etc. the reason for not doing anthing regarding the cancer at the moment is beause of my heart issues. Did the meds you were on have any impact on your heart? Thanks

Overall, great....

In early June I did the Garmin Unbound with my sister, a 52 mike gravel bike ride in the Flint Hills near Emporia, KS.

I exercise most days, lift weights, dem, ride my bike.

Just got back from Iceland with my wife.

She and I are going to Oregon in September.

Only annoying SE is the hot flashes, tolerable...

That is great. Glad to hear that you are quite active. Iceland on my bucket list. Heading to antartica in march of next year and then traveling along the western coast of south america to columbia. The reason for asking is that I am hoping that I too will be able to keep up my activities.

Thanks for getting back to me.

Good to hear about your success the Unbound ride. After a mis-diagnosis of BPH, my PC was finally Dx with Mets, Gleason 9. Just completed chemo a week ago. Prior to Dx I cycled quite a bit, centuries including the “Death Ride” and Levi’s Gran Fondo. I am tentative about returning to riding, but it is a my primary exercise. Any tips about returning to the saddle?

I may be the last guy to give advice about getting back in the saddle since I'm more of a just do it...

I did start slow, did some indoor cycling at the gym, then 15 milers to start, then 20-25 and so on.

Of course, always made sure my wife knew my route and was available to come get me, she did once when I was going through Afib and a breakthrough incident had my HR up to 179 and stay there!

I was in the Army for 22 years so risk assessment and mitigation is just part of my thinking process so I have my bike serviced at a local shop, had flat tire repair kits, fully charged phone, a few bandaids for a minor fall (I'm on Eliquis so wife and doctors always concerned about bleeding...!)...pretty standard stuff for those who ride.

Enjoy, I'm headed out now for a 25-30 mile ride since we have a break in the Kansas heat and humidity with high of only 84 and cloud cover.

Kevin

Thanks for the advice, it was helpful, sorry to be delayed in replying. Up to 30 miles now and looking to do a 40 mile Gran Fondo segment in a few weeks. We do have a bit in common, I was 29 years in the Army (so I guess that labels me as a slow learner), and my wife is a Kansan and a Jayhawk. Visits with her family and being stationed at Fort Leavenworth for 3 years gives me an appreciation of Kansas heat and humidity. Keep on getting out thre.