New and Need Guidance: What questions to ask about prostate cancer?

Our story. PSA 14, urologist scheduled an MRI, 6 weeks later. PIRAD 5 (highly likely cancer).
He scheduled a biopsy 4 weeks after that. Gleason score 8, grade 4 w/seminal invasion. Stage 3b, all Greek to us.
Urologist told us stage 1 cand onfined to the prostate (wrong!). Then we saw a local surgeon who told us nothing and referred us to Mayo Rochester. It is now 5 months since PSA 14.

Going to a Rochester consult was the first time we understood he had very high risk, etc. The docs there are absolutly A1!

We now know how to read and understand MRI and biopsy reports. My advice is to get as educated as possible. Google terms, etc on reports and trust only sights such as prostate cancer foundation, NIH, md Anderson, sloan ketting, Cleveland clinic, mayo, etc. Dont trust sponsored sites such as pharma, too bias.
We went with ADT, Zytiga and radiation therapy. All docs told us surgery will not cure because of seminal invasion, so why risk its side effects.
G
Best wishes to you.

Me, G9, 75, seminal invasion, Grade 5, stage 3C and UCLA gave me RP and hoping for a cure ( long shot). You might still be a candidate for the gold standard of RP. Getting really expert advise is and being good listeners is our most important assignment at this point Good Luck!

Wanted to give people a little update, and also ask for some guidance.

Michigan Institute of Urology is the main Urologist. The MRI was ordered from Beaumont Hospital who created a report with Pi-RADS 4 finding. They did NOT offer the transparineal biopsy however.

We ended up going to University of Michigan who DOES offer the transparineal biopsy. In the mean time they ended up having their own radiologist review the MRI imaging. Their findings are that there is NO 8mm lesion but instead some small dots which only qualify as PI-RADS 2 with no chance or cancer and therefore no biopsy needed.

At this point we have 2 conflicting radiologist results. Beaumont saying Pi-RADS 4 with 8mm lesion and University of Michigan saying Pi-RADS 2 with small dots.

PSA readings are at 20 FYI.

Has ANYBODY ever experienced or heard of this before? Where do you go from here? What do you do?

We have upcoming appointments to discuss the Pi-RADS 2 findings, and all the info I just mentioned was shared with us over the phone and in writing.

The biopsy will help with the final decision of treatment and your father might want to get the Decipher test which will serve as a backup to the biopsy as it will take some material from your fathers biopsy and, outside the institution doing the biopsy, give you and your father, and Dr's, another opinion of the level of aggressiveness. For example, my Decipher report showed that I had a "2.2% 10 year risk of metastasis with radical therapy" (defined as either prostatectomy or radiation). This was out of 6,708 patients with similar clinical features at the time of the biopsy. It indicated clearly, that my 15 year risk of mortality , with treatment, was 3.9%. It is understandable, relatively so, for layman and Dr's and gave me some emotional relief as to the likelihood of death from cancer over time and helped me decide, collaboratively with Dr's input, what treatment might work. Then I researched the radiation machines and side effects possibilities as well as RP. Your doing a good job of asking questions. Your father should be proud of you.

No, this is troubling to have such two different opinions. Go back to MIU and ask what is going on here with the discrepancies. If your MIU Urologist is a surgeon he should be able to read the MRI I would think. Maybe he will suggest another MRI? I wish I could be of more help.

The thing that actually concerns me more than anything is the lack of care/troublesome that the doctors are showing towards 2 completely contradicting reports.

I speak with U of M and they say we have to stick with our radiology department and their findings, which say no cancer and no biopsy. I said so are we to just ignore the Beaumont Radiology Report and pretend that didn't happen? I feel like I'm just tossing a coin enough times until I get the result I WANTED and stopping there, at least according to the way this is being presented. I asked U of M to see if they can have another radiologist read the imaging and they told me no need and also they don't even have any option in the system to request something like that. (This confused me as I thought maybe a quick call with radiology would have granted my request, but no).

MIU we have yet to speak with until the next appointment which is when we'll discuss these new findings. I did however call them to tell them the results to which they were very "meh" about as if not surprised. Where as I'm over here thinking this should be shocking or very surprising to them.

Is it me? Am I overreacting? Am I looking for them to be surprised but in reality this is common? I expected them to be very proactive the moment these new findings came in, as in not even wait on next scheduled appointments but rather have imaging read again or even order a new MRI right away because obviously something isn't right here.

I would think at this point another MRI would have to be performed, but I have to be honest that I don't think anybody can blame me in NOT trusting radiology reports after this experience. Let's say we do a new MRI and a new report comes in... Are we to trust that? I'm so confused at how this could happen. I'm at a point where with a new MRI I will request a report from 2 to 3 different locations.

FYI, I appreciate you guys commenting referring to me as a good son, but I honestly am not doing anything out of the ordinary that another child wouldn't do or go through with their parents or family members or even friends. Reading comments like that concerns me that there's maybe people out there that don't get much support even at times like these. I, and all of us, wouldn't exist if it wasn't for our parents. That goes for everything they've done good or bad because ultimately they've simply done the best they could with what they've had through the good times and the bad. I wouldn't care what I would have to do to be there or take care of things. If I have to lose everything I own to be there for family I will, no questions asked. I feel like my purpose in life and all of my joy comes from seeing happy family members, and my life is complete with that. I couldn't care less for my own material goods, personal experiences, or achievements. I would leave this planet happy in knowing my family had a joyful life. I personally don't need a single thing. And I can see someone commenting saying that on the contrary your family feels the same about you and want to see you do things that make you happy which in turn makes them happy, and I would say you are correct, which is why I try to appear as happy as I can around them, and never harp on things and not hold things against 60 and 70 year old parents who were born in a different time and raised at a different time. I am COMPLETELY contempt and I would consider my life lived to the happiest and fullest just having them be happy. Feeling this way didn't start because of ANY diagnosis or scare of life, it has simply always been my default way of thinking.

I can only hope that all family members are there for one another.

Sorry for the long run on, and maybe wasting minutes of your life reading some stranger's messages on the internet. Just wanted to give a bit of insight into myself and how I view life.

Call Beaumont Oncology and explain the situation and they will have an Oncologist review the MRI. Tell them you are considering surgery or radiation treatments based on MRI testing to date. During my initial MRIs taken on me to verify that PCa hadn't spread there were a couple of concerning incidental findings that were reported on the Beaumont MRI. I called the Oncologist who I spoke to about radiation treatments and she looked at the MRI while I was on the phone. She then sent to second Oncologist who conferred with Radiologist. They all agreed findings were most likely benign and amended MRI report. I did have to go back for a followup MRI after my RALP. This confirmed the amended report findings. Basically Beaumonts Oncology dept. bent over backwards to help me. I'd think they'd do the same in this case.

My opinion is that Dr. Joe Busch in or near Atlanta is very good at reading MRI's. You may look into the possibility of his reviewing the MRI results.

Have you had a biopsy? My urologist used the MRI to provide guidance as to where the biopsy samples should be targeted. This produced a Gleason score of 3+4 and I chose surgery after having a consult with a radiation oncologist.