Just want to give an update since you were all so wonderful after I posted last time.
One place I visited was NY Proton Center. They sent out for genomic testing and it came back as a .43. Dr. Hassan who runs the program there said technically it’s still not in the intermediate range, but the cutoff is .45. For that reason, since it is not a low number like a .2 or .3, he would recommend going forward now with treatment. The rest of my results are 5 core fragments out of 12 had cancer. Three had 5%, one had 10%, and one had 20%, gleason 6. The core fragments were multi centric. One of two lesions was abutting the wall. Capsule intact. I will also speak with NYU Langone again to see what they think as well. A lot of you felt I should be doing AS. Do you still feel that way now?
Thank you so much for your kind responses.
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I was thinking about that myself. It’s all very confusing. Options are normally great. I am grateful to have options, but presently not loving having to make a decision of this magnitude. Thank you for your reply. I appreciate it.
I had to reread your data. I had consecutive MRI's (8 mos apart the latter being a PET MR PSMA Gallium Scan) with a PiRad 4 abutting the capsule before I no longer felt comfortable without having that lesion biopsied. As you know, that was another story. What are the doctors' recommendations? They seem a bit all over the place. Seperately, have you inquired with your insurance provider whether Proton would be covered? I'd want more information on that lesion PIRad 3 abutting the wall.
Hi again. Both NYU Langone and NY Proton Center are recommending doing it now instead of AS. I had two leasions. One PIRad 2 and the other a PIRad 3 that is abutting the wall. NY proton wanted to submit to insurance to see if they will pay, but I am leaning toward NYU Langone if I do this because Dr. Haas has been doing this for years and is highly regarded in NY, and due to the fact that it tracks the movement in real time which proton therapy does not. Although I know they say proton stops in its target. They do allow a 3% over target to make sure they get it all. NYU Langone said if they deny, they feel confident they can appeal and overturn it. Still leaning toward NYU Langone. Maybe because of comfort with doctor. Not sure.
Get the 3rd opinion from MSK !! What you need is some more data about AS success for men with your biopsy and scan results. Did you ask Langone for such data.? How else could you make an INFORMED decision? And how else should a provider make an informed recommendation??? Seat of pants??
I would push about the significance of the location of the PiRad 3 lesion. That's the primary factor for me. All the other data is a place I've been and was ok with AS.
How long have you been on AS? Are you getting a biopsy once per year?
I felt uncomfortable with getting more than the original biopsy for cancer diagnosis because i just felt that pulling cancer cells through the intact prostate capsule.
I was on AS from 2017-2023. I had my first bx in 2017 and confirmatory bx in 2018. Unfortunately had SIRS episodes w/o inflection both times. It’s a long story. Anyway, over those years, the medical community has stretched out the time between bx’s. Every year, for the most part, is becoming excessive as long as you are doing MRI imaging every year. I’ve had 5 MRI’s and most recently, a PET/MR PSMA scan since 2017.
I think medical consensus has somewhat debunked that theory.
I can’t find consensus by medical experts on that theory.
But if one just thinks about it one can certainly visualize an intact prostate capsule and Cancer being contained. Then picture puncturing the capsule 12 times with a needle and penetrating a tumor then sucking said tumor cells out then pulling contaminated needle out through the punture. If cancer cells are on the needle surface how does it not come out with the needle? Do they use a new needle for every puncture?
Do that every year under AS and your mind can conjure up scenarios.
How does the medical consensus explain or prove that doesn’t happen especially since nearly every single one of us has had a needle biopsy to get diagnosed.
You do need a confirmatory (2nd) bx to even be considered for AS in most programs. As long as you are getting MRI's done and DRE's and PSA checks on a consistant basis and data remains steady, doctors have been stretching the time between bx's. It's usually because of possible infection not spreading cancer via a needle. Getting one bx and then not following up is not AS and is more dangerous than worrying about the possibility of cancer spreading by needle. There's enough out there to make a decision one way or another.
This is all new to me. Not loving the idea of As and yearly biopsy, and not loving the idea of SBRT. But now I’m leaning toward treatment due to my decipher score and volume and family history. Still doing homework and may visit MSK in two weeks just to be thorough.
I had my prostate removed even though i was a gleason 6 and just one round of biopsy (original diagnosis).
After RP my rp biopsy upgraded me to a gleason 7 and the beast had escaped. EBRT didn’t get it either, but I regretfully turned down the recommended 6 months of lupron. Don’t know if that would have made any difference.
Yes, the one abutting the left lateral wall from what I remember and the fact that 5 out of 12 fragments and a 4.3 on genomic testing is what’s pushing me more toward treatment now. I’m usually very decisive with things. Not this.
Hey KocoPr. Thank you so much for reaching out. I spoke with them and with another urologist who I know through business connections. I decided to move forward with sbrt cyberknife at nyu langone. Honestly, after talking about my prostate cancer with friends and neighbors, I can’t believe how many have prostate cancer and so many of them have used Dr. Haas at NYU Langone with great success. So I feel good about my decision. I’ve been impressed with the social worker, nutritionist, and entire team. So I feel comfortable. I have fiducial markers and space oar being done on 12/22, then another mri and ct scan on 1/5 plus molds made for my legs. Then treatment begins 1/22, 5 sessions done every other day. At this point I feel less stress because my decision is made. Also, knowing numerous people that went through it, it seems like this is the place and guy if you live in Long Island.
May I ask how you’re doing. Seems like your journey has been long, and I am hoping things are going well for you at this time. Please let me know. And again, thank you for following up with me. It’s definitely a lonely journey.
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Follow-up biopsy at MSK
No more active surveillance for me
Advice for my husband, looking at treatment options
Likelihood of post-RP radiation? 
55 and prostate cancer - Scared shitless
