Lurker finally posting....

Macro

I've known for the last 45 days that I have prostate cancer that requires treatment (65 yo in very good health). And I am committed to whatever treatment I select. I have been reading posts here for the last 30 days and I have found those posts to be very informative. Very useful. Plenty of YouTube vids to boot. But I am still indecisive as to what treatment path to take. The consequences of said treatment are my primary determinate. Based on what I have read, my take-away is to expect notable consequences that will likely affect my life and my relationship. To survive those consequences, I feel that my relationship (I've been dating a woman for the last 2 years) needs to be rock solid. I am searching for a sex therapist that can help us in advance to anticipate and evolve our relationship in another way that can keep it somewhat fulfilling and solid. Perhaps a bit of a tall order, but ED physically or chemically is a bit of an elephant in the room. Separately, we are creating a Relationship Agreement and a Maintenance Agreement that we can fall back on that will help us remember, perhaps in challenging times, that this situation will pass.

Having said that, more about my specific situation: PSA of 11.5 in August, MRI in September with 1 lesion found (PIRADS4). Transperineal biopsy Oct using UroNav. 12 samples + lesion. Pathology of 8 positive of 13 (7 of the 8 on the Right side) 3+4, 4+4, 4+3, 4+3, 3+3, 3+3, lesion (4+3)...and since I have read about this, also noted for lesion Cribform Gleason pattern 4 component: Focally identified. I recall reading Crib is not radiation treatable or resistant??? 2 of the others samples also are noted a Cribform "Identified". Left side prostrate is a single 3+3. Prostate is 35mm. Perineiral is noted as normal. No evidence of macroscopic extracapsular extension, seminal vesicle invasion, pelvis lymph nodes, or osseous lesions. I'm awaiting second opinions of the pathology (HMO is slow) but starting 3/1, moving to BCBS Supplement plan (for obvious reasons). Have had consults with Surgeon (not the guy), and traditional big Hospital Oncologist. Have appointment tomorrow at USC Keck, am investigating Proton in San Diego and at Loma Linda University. Scheduling an Consult at UCL for Unfold AI (investigational mapping technique to "pinpoint" cancerous issue (not sure if matters but its like GPC for cancer...still got to have someone that can do something with it...they say that 25% of Doctors change their treatment plan based on what this mapping shows). Very open to all thoughts, suggestions etc. I know I need to make a choice soon as I would like to undergo treatment within the next 60 days. Not only procedural advice, but facility advice......and don't forget looking for sex therapists for prostate patients (before and after). Thank you to all of you for the knowledge I had already received and for what I hope to receive.

Macro

Forgot to add, I am asymptomatic- no ED, no urinary issues whatsoever.

Clevelandguy

Hi,

Sounds like you are doing your homework. Since you have access to it I think Proton therapy is an excellent tool with the fixed beam length to control collateral damage to other tissue and organs. With 4+4 in my humble non medical opinion it’s good your dealing with it soon. I know it’s a big decision but do your homework to get the best possible outcome.

Dave 3+4

Macro

Had a consult this morning, 2/27, with Dr Sia Daneshmand at USC Urology (Surgeon), Director of Urology Oncology and Clinical Research. Not surprisingly, he was a strong proponent for RP. However, he looked ta Biopsy result and CD date from MRI and PET/CT scan data and quickly determined that the geographical placement of my 4+4 and 4+3 cores were such that they were essentially "centered" and away from the capsule edges and that he felt highly confident he could spare both nerves (good news for the surgery modality). Further, he samples 5-10 lymph nodes from either sides to check for cancer (there is no displayed metastases shown on Pet/CT scan) and if less than 10% of the nodes are clean, he doesn't pursue ADT as an immediate follow-on (works for me). I will tell you that Dr Daneshmand was one hundred times better than the initial surgeon consult I had - that guy was a "tool" or technician in my opinion...not the guy I'd want to practice his medicine on me. I'm still pursuing a 3rd consult - find the right guy and right place!

I really wasn't leaning into Surgery but when someone says they can spare both nerves and maybe no ADT, I'm all ears, If true.

frank1956

Macro,

I am just a random guy on this forum. I have no wisdom or experience to share. Are you also going to look into Loma Linda Proton, and San Diego Proton treatment options?

Good luck to you.

Macro

Am doing so as we speak however, radiation typically includes ADT.......if I can get RP and no ADT, that's a huge difference (to me). If I had to get ADT, I would likely be much more focused on Proton, SD or LLU.

Steve1961

HELLO YES I JUST FOUND OUT CRIBIFORM CAN BE AND IS RADIATION RESISTANT?L i’m sorry and I don’t care what anybody else says take it from me I had 3+4 crib form and I chose radiation with Breaky therapy booster bad decision all the Gleason three is gone but the Gleason four is still there and it is not a new growth. It is directly next to the marker that was targeted say what you want I was told by the UCLA surgeon that yes they are finding out, that crib form can be definitely radiation resistant whatever you do do not choose any form of radiation you will end up like me. I’m having salvage surgery done now.

Steve1961

Im going to dr reiter UCLA for salvage surgery

Macro

I'm sorry to hear about your experience Steve1961 - I imagine after all the investment time in Radiation, you find out what you did. Wow, I would be absolutely devastated! I admire your soldering on..... I owe it to these Boards to be aware about crib.....I spoke to the Surgeon at USC about crib and he basically said "sometimes" which is not helpful at all IMHO.

Question: What's the general consensus about NCI (National Cancer Institute) accreditation? Besides the Norris Center at USC, we have City Of Hope (CoH) in Duarte which is also a NCI Comprehensive Cancer Center. Anyone had an experience or any correlation with NCI centers and good experience (or bad)? I don't recall seeing anything here mentioning NCI ?????

I've scheduled a 3rd surgical opinion with CoH on Mar 11th. If they give me the same scenario as USC (spare both nerves, no ADT), then I'm feeling as good as I can about surgery as the best option for me....then I'd just have to chose between USC and CoH (a good problem to have).

Steve1961

the worst part I probably wouldn’t of needed radiation now I exposed myself to cancer later on. I also have bowel problems. And i need flomax to urinate I questioned this radiologist and straight up about cribi form. Has he treated people with it and he said he has I go how many he said not many how are they? They’re fine, the sad thing is, I was so afraid of surgery I knew this guy was lying to me and I still did it. He should have recommended surgery even though he is a radiologist. I did see one radiologist and he did recommend surgery. I should’ve listened to him. Yeah I’m upset, but what can I do? I can’t go back. I really do think that the good Lord is giving me a second chance and I’m taking it .

Steve1961

Have you thought of dr robert reiter UCLA Im very impressed with him look up his bio and also look him up on YouTube. He’s a very very intelligent well spoken man and he got lots of experience. He deals strictly with a lot of.high risk men like us .just a thought

Steve1961

Personally, myself, I’m gonna tell him do not spare the nerves or the semi vessels. I don’t wanna take any chances I can’t have radiation again.

Macro

Steve1961, given where you are right now, what you are saying makes good sense. Best of luck.

PS: Dr. Reiter / UCLA were on my short list; I recall seeing his name herein someplace and some ++ comments.

stringbender

https://csn.cancer.org/discussion/comment/1713645#Comment_1713645

Steve will you Private message me please.

Doug