Newly diagnosed and still gathering information

I was diagnosed in mid Feb. I have two small lesions in my prostate and my Gleason Score was 8 my last PSA was 11-12 and my cancer is high risk and aggressive. I completed an MRI and a PSMA. The PSMA determined that my cancer has not spread and contained in the Prostate. I'm scheduled for a RP at the end of the Month. Depending on the outcome of my RP I *might* have to have some radiation and Chemo. Your PSMA/Pet Scan will determine the treatment. You will have options after that. Welcome to the forum, all of us here are fighting the good fight against this and you are in amazing company here. I have learned so much on this forum, you will too. You are not alone in this. I wish I could give you a hug right now cause the worst part is being newly diagnosed. Please continue to educate yourself. We are here for you.

I have to admit it is a lot of information coming at you at one time. The second doctor I saw shared much more information than the first, I don’t know why he didn’t but just wanted to schedule a surgery. Scared me off for sure. I am deeply concerned, another way of saying scared, I’m 65 years old and still have a lot of life I want to live

@brucemobile
My urologist, R/Os and PCP do not focus on just the normal levels of PSA (below 4 considered normal) but the rising PSA levels over time.

My PSA was 3.75 but had been rising steadily over time. I had MRI showed suspicious areas. Biopsies came back with 3+4=7 Gleason Score. My Mayo R/Os asked to do a Decipher test. It came back low risk versus the intermediate risk of the biopsies. I also had a bone scan and PSMA (both negative).

Please if you are in doubt get a second opinion. Also did your urologist mentioned the Decipher test to you? If not asked for one. It will give a more precise diagnosis of the risk level of your prostate cancer. It will make a big difference in treatment options just like a PSMA will also do.

You will see many of us promoting Decipher tests as they are very valuable information. You mentioned surgery. Has your urologist mentioned radiation. There are so many different radiation treatments with great results. Where you mentioned hormone treatments? The Decipher test would really help (like it did for me) the need for hormone treatments.

Getting second opinions can be done by having your medical records sent to other medical facility. Mayo, Cleveland Clinic, John Hopkins, UFHPTI (if you are considering radiation). If you are interested in radiation may I suggest getting an information phamplet form UFHPTI. It is free and included two of the books (Walsh and another) included in the package which is free. There is no pressure to go with them but they also do second opinions.

I was diagnosed at Mayo Jacksonville but did a second opinion at UFHPTI per my PCP recommending me to get a second opinion. The diagnoses and treatment were the same at both insitututions. The only diference was that UFHPTI had proton radiation treatment versus Mayo Jacksonville only have proton.

Good luck! From my experience and that is what I am passing on consider asking for a Decipher test and if you are still in doubt about best treatments suggest a second opinion.

I'm 60 and I'm scared as well. I'm having some anxiety about my surgery but I know it's necessary. I don't want the incontinence afterward and I'm going to do the necessary PT exercises etc to regain control of my bladder. Your Dr. might have wanted to schedule surgery that quickly due to the fact that it's a process with insurance etc. and takes a while. They might have wanted to schedule it in advance so that you could get a spot quicker etc. and more from a logistic standpoint then a disease standpoint. I wish that I could get my surgery quicker, but I'm stuck with my date due to the number of people in line ahead of me for the same surgery.

I will mention a decipher test but no, that was never mentioned. The first urologist just flat out wanted to do surgery, discouraging radiation because he told me the tissue would be so damaged it may not be possible to do surgery later. My second opinion also recommended surgery but unlike my 1st has ordered a PSMA. Which the first doctor was using information from an MRI. I guess it’s important to note both doctors have surgical backgrounds so it is possible they are playing their strong suit as that’s what they know best. My second opinion is going to set up consultations with doctors of other treatment disciplines so I can make an informed decision. I am employed at The University of South Alabama which also includes The Mitchell Cancer Institute. I am going to read up on the Decipher test. Thank you all for your comments and suggestions

Jay, I feel you. My older brother is a doctor, OB/GYN but knows other doctors in Atlanta. He told me, this didn’t just happen so not to rush to a decision. I had kidney stones in 2021 and my PSA was 3.65 then. I probably should have started investigating then. I too am concerned about the recovery, things like not being able to control you bodily functions, wearing a diaper, and having ED the rest of my life. It’s a hard thing to have on your mind during your idle times during the day…all consuming

Suggest that get PET scan first, and if it is determined as cancer/tumor, then get SRBT.

That’s where I am right now. Waiting for insurance. I’m thinking surgery with the DaVinci

Doing the pet scan first really makes sense. If the cancer has spread outside the prostate, then treatment may be different. They could zap any metastasis and do the prostate as well, instead of removing it. Doing surgery would give you a much better picture of what your cancer looked like. Frequently the Gleason score changes after having a prostatectomy, since they can examine the full prostate.

My Gleeson was 4+3 and I’m still here 15 years later and I have a genetic problem. With the right treatment, you could go in to a long-term remission.

I just finished a conversation with a guy I see at work. I had heard he was post op for prostate cancer, we even use the same doctor for the procedure. He was 100 percent pro for the surgery, his cancer spread outside of his prostate so now he is being treated for that. He gets a pet scan about every 3 months, they find the spot and hit it. He said the worst part for him was the week after. I’ve had a double hernia repair so I’m no stranger to having a few extra holes where they went in to do the repairs. I want as many years as I can get where practical, I hate that this has become part of my life for now but I’m not backing down from it