Squarely in the "grey zone"

[Jay4546]

Some new info since my last post and I’m firmly in the borderline “grey zone” between high low and favorable intermediate. I was awaiting my biopsy 2nd opinion and initial consultations, which are all now rolling in. My previous diagnosis was a targeted biopsy finding at MSK of 3+4=7 (5% 4) left TZ (MRI PIRADS-5) and 3+3=6 right TZ (MRI PIRADS 2/3).

The second opinion of my biopsy came in to throw me squarely into the gray zone. Johns Hopkins findings were 3+3=6 on left TZ and 3+3=6 on right TZ, all 8 random cores benign. I couldn’t get my head wrapped around two different findings from two centers of excellence, so I reached out to Dr. Epstein who called me back. He said that pathology findings were subjective and MSK saw a little bit of 4 in their opinion, where he saw none in his opinion. We discussed my numbers and he felt I was borderline, but surveillance wasn’t out of the question. PSAD of .16 to .20 but in gray area. High volume on targeted cores, but he mentioned they would be with a MRI targeted biopsy well performed. He said if it were him he would wait a year or maybe 6-8 months if I didn’t feel comfortable with that and take another PSA, MRI and maybe biopsy.

Then met with MSK Radiologist. She didn’t really take Hopkins report into consideration and based recommendations on her own pathologist’s 3+4 (5% 4) finding. She said I’d be an excellent candidate for both surgery and radiation. For radiation she suggested SBRT in 5 appointments. They also met as a team and reviewed my case for seeds and ultimately didn’t suggest due to index lesion being anterior and were worried about leaving open spots not covered sufficiently.

Finally, I met with the MSK surgeon this week. This is the one that was a REAL surprise because he is the Director of their robotic surgery technology and training and I fully expected a full-tilt surgical recommendation. He eagerly studied and considered the Hopkins 2nd opinion along with the MSK pathology and broke it down for me. He said I was clearly borderline, but it wasn’t really important to ask myself which was right or which was wrong and how to mentally break the tie between 3+3 and 3+4. He said even the 3+4 showed very little 4, so the results are very similar. He said he felt I would be a good candidate for surgery and also said the radiation suggestion of SBRT 5 sounded spot on as well. HOWEVER, he would suggest getting more information about the aggressiveness that we’re looking at and ordered a Decipher test since there was no rush and didn’t want to risk over-treating. He mentioned that if the results came in as a higher risk then we’d cross that bridge then. But if the results were on the low end that I might be a candidate for surveillance.

Soooooo….looks like I’m squarely in the middle here. How’s all that sound?

MY DATA:

53 years old

3/2018 PSA - 3.3 (primary care)

3/2019 PSA – 3.3 (primary care)

2/2021 PSA – 4.7 (urologist)

3/2021 4K score - 19%

4/2021 MRI – 2cm PIRADS-5 left TZ - ECE/SV/Pelvis/NVB/Bladder/LN all normal and intact

4/2021 MRI re-read (NCI) – 2cm PIRADS-5 left TZ and .7cm PIRADS-2 right TZ – all else normal/intact

4/2021 MRI re-read (MSK) – 1.5 cm PIRADS-5 left TZ and 1.1 cm PIRADS-3 right TZ – all else normal/intact

4/2021 PSA – 4.2 (MSK)

5/2021 Trans-perineal MRI guided Biopsy – (MSK) 3+4 (5% 4) and 70% of targeted left TZ cores , 3+3 and 45% of right TZ targeted cores (+PNI), all 8 random cores were benign.

6/2021 Biopsy re-read – (Hopkins) 3+3 and 65% of left TZ cores, 3+3 and 43% of right targeted cores (+PNI) , all 8 random cores were benign.

6/2021 PSA - 4.2 (primary annual physical)

[6357axbz]

Unless I missed something it sounds like you are not stage IV mPCa and would be better served by some other forum. This forum is dedicated to APC, incurable disease.

[treedown in reply to 6357axbz]

You might want to take another look.

[CHPA in reply to 6357axbz]

Where does it say that? I’ve been in this forum for 18 months and the vast majority of posts are not related to stage IV.

[6357axbz in reply to CHPA]

Open any post. Go to “My Hub” on the menu at the top of the page. You will see this forum is for advanced prostate cancer. I also disagree with you that the “vast majority of posts are not related to stage IV”. They are.

Stage IV: Cancer has spread outside the prostate to other parts such as the lymph nodes, bones, liver or lungs. This stage is often called “advanced prostate cancer.”

[Murk in reply to 6357axbz]

I looked at my Hub and it says "Prostate Cancer Network", no mention of advanced etc?? So maybe the system here is lumping us all in together??

[6357axbz in reply to Murk]

Advanced Prostate Cancer and Prostate Cancer Network are both listed. If you open Prostate Cancer Network and read “about” you’ll see that’s the one for non-APC PCa patients.

I don’t think it is intended that the posts are all lumped together.. if that’s happening then I think Darryl, our administrator needs to look into it.

Most of us APC patients on this forum spend a lot of time reviewing posts to 1) find information relevant to our unique case and 2) to offer information where we can to other APC patients. Having non-APC folks post here only adds to the time we already have to spent sorting thru posts.

I’ll send Darryl a note.

[CHPA in reply to Murk]

Not really sure why it matters. Someone comes looking for advice and someone has advice this seems a good place to exchange it. If one doesn’t feel someone’s post warrants and answer, move to a post which captures your interest. Prostate Cancer in any form is a crisis to the person who was just diagnosed.

[6357axbz in reply to Murk]

I just messaged Darryl snd he said that should not be happening. Hopefully he’ll chime in here.

[fluffyfur in reply to 6357axbz]

He is in the right forum --you need to double check where YOU are. LOL

[6357axbz in reply to fluffyfur]

You are correct. I thought I was only in APC. Not sure how I became enrolled in PCN but as of now I’m cancelling out of that.

[Jay4546 in reply to 6357axbz]

I was very careful in double checking that I was posting only in "Prostate Cancer Network" and that is the only thing listed at the top.

[6357axbz in reply to Jay4546]

Yeah, I see this says "Prostate Cancer Network" at top of page. I guess there is some crossover. I didn’t realize I was getting posts from PCN. Now to figure out how to stop it😣

[Tall_Allen]

Did you talk to Behar Ehdaie? He's the head of their AS program and is excellent. Good idea to get Decipher. I'm impressed that you called Epstein.

[Jay4546 in reply to Tall_Allen]

I have Dr. Ehdaie on my list if the genetics comes on low enough. I was pretty surpised that Dr. Epstein actually called back, but he couldn't have be nicer and pateiently answered all my questions.

[Hiker64]

Our situations are very similar. My biopsy showed 3+3 and a couple 3+4's with fairly low volume 4's and my PSA was also 4.2. I was a candidate for everything from AS to surgery or radiation. I was actively looking into one of the ablation therapies (because I wasn't a fan of radiation or surgery) until my Decipher test score came back squarely in the high risk category. That knocked out the ablation stuff but left me scrambling to research radiation or surgery. I eventually chose surgery because of occasional bouts of chronic prostatitis and weak stream issues that even can be made worst by radiation. I just had my catheter removed yesterday and have complete control of urination (one of the lucky ones). The Decipher test is a great tool and in my case may have prevented me from going with a therapy that I would have regretted. Hopefully your Decipher scores are much lower than mine and AS or focal therapy is still available to you. Good luck on your search for treatment. Feel free to message me with any questions. That's what we are here for!