I am scheduled for a second Biopsy and plan to get a second opinion. I read Dr. Epstein with John Hopkins is on indefinite leave. Should I just submit it to John Hopkins, or does anyone have any suggestions for a good place for a second opinion. Previously my biopsy was 7, 3+4, but recent MRI shows serious lesion Pirads-5 with high possibility of aggressive cancer.
Thanks,
Carlsbadjack
I had mine sent to Mayo. Original report had 4+3 and a 3+3 on left (two cores total) and a single 3+3 on right. Mayo said 4+3 and 3+3 on left with perineural invasion, nothing on right. PSMA PET confirmed no uptake on right. My radiation oncologist was trained at Mayo and we are basing treatment off the Mayo report.
Additionally you may want to have a Decipher to give you an idea as to the aggressiveness.
Thanks
I would still send to Epstein's team. He was never a one-man show, and the folks who have trained and worked with him could reasonably be expected to do as good, or nearly so, a job as he did. Though my second opinion was signed off by him (a year and a half ago), I have no doubt that other hands and eyes were involved along the way.
And I assume you know, since you're aware of his absence from JH, that what he's accused of has nothing to do with medical competence, but rather personal lapse(s) in judgement. And no, I'm not defending him!
Thanks for response. I will have JH take a second look at it.
My understanding is pirads 5 means highly likely clinically significant cancer but doesn't mean aggressive, a biopsy diagnoses the type of cancer not pirads, if I'm wrong others on in this forum must correct me.
Thanks
My MRI report said ""...very highly suspicious for aggressive disease.
Thanks for response.
What was the PSMA pet scan SUV max value of the prostate?
I just got a simple MRI with and without contrast., NOT A PET scan.
The pathologists in his lab are the best in the world. Other pathologists are jacks of all trades, masters of none. It doesn't matter if he is there or not, they are still the Gold Standard for prostate pathology, accepted everywhere as definitive.
a center of excellence should be just as good. Have heard some negative procedures at JH recently, perhaps reason for LOA, true or not. That is where I received my second opinion. There are similar facilities with excellent reputation should you decide differently.
Thanks
What kind of biopsy are you getting: transrectal or transperineal? Separately, are you getting a MRI/US fusion biopsy or a MRI (in-bore) guided biopsy?
Transrerineal and MRI bore guided.
Could I ask where you are having this done? I'm trying to keep an up-to-date chart of those performing the in bore guided biopsies.
I may have misspoke. It is an MRI guided biopsy. I will discuss with doc when I speak with him to confirm if bore guided as well.
My husband had an in bore MRI guided biopsy at MD Anderson in Arizona
Thanks, that's good news, glad to see MD Anderson on board.
When my husband had the in bore biopsy, I believe a PI RADS 4 and 5 were targeted from MRI. They took two cores from each lesion, only one had small volume, Gleason 6. PSA was high , around 16. Procedure was painful and took a long time.
Fast forward a couple years 2022, he had 22 biopsy cores with a MRI fusion biopsy Mayo, all benign ....PSA around 26.....
In 2023 he had a 20 core MRI Fusion Trans perineal biopsy at Mayo....PSA 46.6 ....8 positive cores ...one 5+4= 9, two 4+3=7 and five 3+4=7... All of the three higher grade cores were not identified on the MRI a few months prior.
If my husband were to ever need another biopsy, he would insist on a Trans perineal biopsy, and he would not agree to an In Bore biopsy.
MRI doesn't find everything and some lesions are missed with transrectal biopsies.
Just our two bits...
As I understand it, transperineal is the way to go due to possible infrection from transrectal. I know my first biopsy was transrecatl and created a lot of drama for me. Problems with urinating that is just now feeling almost normal. Thanks for response
what was your husband's problem with the in-bore MRI biopsy?
The in bore biopsy seemed to take much longer, he has a bad back and it was uncomfortable being in there for so long … he also said it was painful to have the cores taken after a certain point.
Since the lesions identified on the MRI were the only areas targeted, it missed other potential areas of concern.
Of course the In Bore biopsy is supposed to be one of the most accurate procedures.
But… it is transrectal, increasing the risk for infection.
Somewhere in my husband’s cancer journey( he had several surgeries for bladder cancer too, catheters etc), he developed a resistant bacterial infection causing recurrent UTIs… and is on long term antibiotics.
Thank you for the information. I have a bad back, too, but I take large doses of morphine every day. which works. Did they give any conscious sedation to him for the procedure (e.g., proposal, fentanyl, Versed)? Seems like they should have taken some extra random cores to check the rest of the prostate, not just the dominant tumor. How's he doing with the ADT treatment?
He only had topical numbing. I agree some conscious sedation would have helped … I think every doctor who performs biopsies should have one, to get a patient’s perspective
He has fatigue with the ADT , and some hot flashes, which are manageable .. too early to tell with the Zytiga, as he has just recently started it.
Thanks ! You sound like my wife, who's a nurse and the fact that most doctors haven't experienced what their patients have. Where did he have the proton therapy done? Did you have to travel there from out of state? I haven't checked your profile, but I will.
My husband went to Mayo for Proton, in Phoenix. We live in Phoenix , so it was convenient.
What is your husband going to do next? Treatment plan?
He has completed 28 proton radiation treatments. He is on Orgovyx for ADT and started Zytiga with prednisone this past week .
What was his PIRADS score? Gleason score?
You can check my profile for more details … He had two Pirad 5s in last MRI , Gleason 9
I just checked his profile. Thank you for the detailed information. It's very helpful to me. I live in Albuquerque, NM, so Phoenix is not too far away. I'm expecting I will get a MRI/Fusion transrectal biopsy, but I would prefer a MRI-inbore transperineal biopsy with conscious sedation. I'm T3a, PIRADS = 5, so it's similar to your hubby. I also started Dutasteride, which blocks the generation of dihydrotestosterone (DHT). He might want to consider that medication. The androgen receptors on the PCa cells respond only to DHT, not regular testosterone. He could start by getting his DHT level measured.
I’ll check into the Dutasteride…
He is following the protocol s from the Stampede trial for high risk , prostate confined PCA.. Gleason 9 and PSA 46.6.. we are hoping it will improve his overall survival and metastasis free survival.
Good. Here are a couple of links to papers about Dutasteride (which is a newer version of Finesteride). pubmed.ncbi.nlm.nih.gov/203.... spandidos-publications.com/.... Dutasteride is a 5-alpha reductase inhibitor (which prevents the conversion of T to DHT).
Thanks
I just found a paper from Germany on robotically-assisted transperineal biopsy inside of a MRI machine. Don't think it's ready for prime-time, though. The accuracy of the targeting is much improved. onlinelibrary.wiley.com/doi...
Whatever kind of biopsy you get, I would definitely recommend Transperineal… Mayo Phoenix just recently hired a doctor who does the Transperineal MRI Fusion biopsies… we had to wait two and a half months to get an appointment with him because he was so booked.
His In Bore biopsy was at MD Anderson in Gilbert, AZ .. and was transrectal.
Thanks ! Do you know if they can do a transperineal biopsy inside of an MRI machine?
I don’t know…
curious as well - just sent mine in last week.
my husband had his original biopsy at Mayo Phoenix, sent to Johns Hopkins for second opinion, one core down graded from 5+4 to 4+4, another core upgraded from 3+3 to 3+ 4.
Thank you for info.
I myself had a transperineal MRI fusion biopsy via Artemis at UCI. I was awake the whole time during the procedure, which took about an hour. Piece of cake - never going back to old school transrectal way ever again.
Urologist recommendation at Johns Hopkins
What Do You Do When Your 2nd Opinion Is Different From Your First
second opinions- 
One Biopsy, 2 Opinions, Now What?
Pathology changed with 2nd opinion - your thoughts appreciated.
