Getting head around what to expect

[Melzer2169]

I like to have facts. In times of stress I think Facts are our friend. Better to be prepared, mentally, physically, financially, with support systems, etc.. so looking for any insights as to what I should expect and prepare my husband, myself and my kids/family for in the weeks and months, years ahead. (I realize only God knows the future)....

Situation:

8/2022: Hubby (56) DX Prostate Cancer 4+ 3= 7, 11/2022 prostatectomy Gleason , T3a and Intraductal Carcinoma....Somatic ATM and TP53BP1. Decipher .98 No further treatment at that time.

May 2023, PSA <.05 ,

November 2023 PSA <.05,

May 2024 PSA 1.6. current age 58, otherwise healthy and in great shape.

Next steps: Verification PSA scheduled for June 10 2024, MSK says to expect Radiation. but will do PSMA scan first. did not mention ADT but I assume that will come along or after radiation.

Ty in advance

[Melzer2169]

I should have added, Intraductal Carcinoma w Cribiform (spell??) was noted on pathology report and I understand that is significant.

[mrscruffy]

For me there were some lows like being forced to change our sex routine and the side effects of ADT. This will sound crazy but overall my life has changed for the better. I retired at 54, am in the best shape of my life, travel monthly, some long trips some short trips. But the best part is since we are childless by choice We have bonded with some truly beautiful females 20 to 40 years younger than ourselves that provide so much support for my wife and I. If not for the cancer the many positives in my life would have gone un-noticed or not been appreciated. Life is good and I am not missing a beat

[Scout4answers in reply to mrscruffy]

Right with you dude but making it happen with only one woman.

[Hidden]

I was diagnosed in 11/2019 with G9/intraductal/ cribiform/PNI.

Not much hope, but last year I started BAT + ARSi.

It works for me, keeping the cancer under control. PSA high in the BAT periods, 0.2 in the ARSi periods.

Maybe this can make it a chronic disease.

academic.oup.com/oncolo/art...

[Melzer2169 in reply to Hidden]

Thank you for sharing. were you previously on a standard ADT and then became CR?...or they went right into this BAT approach? Trying to understand, ty for sharing I really appreciate it.

[Hidden in reply to Melzer2169]

I became resistant spring 2020 on Enza and ADT. Started BAT spring 2023, PSA increased from 2 to 3.4 over three months, then Enza again and PSA dropped to 0.14 in August 2023. In three weeks another three BAT cycles, then Daro. Hopefullly PSA will drop to 0.14 again, I will post the result in August..

[Scout4answers]

I think you should plan for an extended life together.

My plan A is to get the best medical attention I can and try non SOC things that look promising with low risk.

Plan B is to live life to it's fullest and never say no to a opportunity to have fun with the people I love, so that if plan A fails I will have no regrets.

[Melzer2169 in reply to Scout4answers]

Ty sounds like a great way to think about it all.

[KenJamgo]

Hi Melzer2169, Just wanted to say hello as I'm new to this journey as last three months have unfortunately joined this (rare intraductal Carcinoma) Club. Just had Radical P. on 4.4.24 and looking for the few that share similar diagnosis; I'm Intraductal Carcinoma, Gleason 9, Cribiform/PNI/Stage 3 so hoping I can learn and share hopefully success stories. I see OsloN is in the same boat. Wondering if anyone has created a "group" just for Intraductal PC folks as it seems to my newbie and only three month in crash course on all of this to be a small minority of the overall "PC" community and might be best served by an independent community? Again so new to this and maybe it already exists?

[Hidden]

I only want to add that I have never used chemo, the efflux pumps are upgraded if you do, harder to treat the cells afterwards.

If PSA is close to zero after my third BAT - ARSi period I regard it as a possibility to make adv pCA a chronical disease. Unfortunately very few regard this as a possibility.