active sureillance-path forward

Hi All
summary
DX 4/18 1/12 G6(5%) initial PSA at DX-4.3,DRE-nodule, MRI-piRADS 2 nofocal lesions BPH identified, 2nd DRE(penn med) slight induration.
PSA basically flat running between 3.0 and 3.5-see signiture
2nd BX 6-19 15 cores all negative, 2nd MRI 1-20 no change, DRE(1/20) slight induration
path forward biopsy 6-20,PSA every 3 months
note original biopsy done by NJ urology but switched to Penn Medicine(any comments about Penn appreciated)

Writing the cause just had urology appt with the RN(she was way better at explaining thing in a manner that made sense than anyone I dealt with) of a urologist(one who did 2nd biopsy) who practice specializes in oncology.

Previous appt were with a general urologist who had a different opinion he wanted MRI 6-20 not biopsy and PSA every 6 Mo

So my preference would be to do just the MRI given the fact that there are no markers indicating a problem and eliminate or defer another intrusive biopsy(had no problems with previous biopsies). The RN told me there practice is to do at least 3 biopsies after which they will decide to just stick with MRI and PSA, spread out biopsies in some way or stick with annual biopsies with MRI. This assumes that there are no negative developements. I dont wnat to be sloppy and miss something but biopsies are intrusive and have risk so would like to avoid them

Also is it common to visit with an RN instead of the DR. Do like her cause she listens and explains well so far. Figure the urologist is reviewing all that is goin on. The first urologist at penn did not seem to be totaly on board with active surveillance(old school). Probably ready to retire??. Also he was diagnosed with melanoma(a bias here)

Will have a further question about BPH later but dont know if this is the right forum??

So any comments deeply appreciated
thank to all thos who have previously commented. This is a great forum loaded with information

sorry bout being so long winded, I know most here have far more serious issues to deal with and I feel for them but in spite of many problems we do live in miraculous times where we can so easily share our experiences with a broad spectrum of people

mufjem,

It's not uncommon these days to have your primary medical person at a busy practice to be a PA (an RN with specialized training). I'm surprised you haven't encountered this before. Don't worry about it, in fact, it's likely that she will know more about your specific case than the MD's in the office.

For the rest, different practices have different AS protocols, the details will likely depend on what specific tools they have available.

Djin's opening sentence says it all, based on what what we know at this time.

Perhaps one more "protocol" biopsy in a year or two, but after that, there should be 2-4 years or a test change to justify one. Annual biopsies for AS are becoming a thing of the past.

A PSA test (or better yet, PHI) every six months, annual DRE, and two year MRI are my protocol at this point.

Hopefully, we will never need interventional treatments. Or, when we do, it will be a pill or passing through a scanner.

2019Guy said...
Since I'm in a similar situation to the OP and ASA it's always good to read re-assuring comments. I do however take them very advisedly as one always should.

The AS plan I'm on now calls for twice yearly PSA and MRIs. At least I think so, since I only started on this journey a bit over a year ago. As I've written before, I had issues with my original MRI reading of PI-RADS 5 that was seriously downgraded to essentially zero by three other radiologists. So I'm always going to be wary of such readings and likely seek second and third opinions.

Thanks to all.

You are right to be cautious, but very serious PCa rarely slips though good AS protocols. That said, I personally would not go on AS without a genomics test. We now know that high metastatic risk cuts across all Gleason scores. I am not saying that G 6 can metastasize -- it can not -- however, some men with G6 progress and develop higher-grade lesions, and those can metastasize.

Djin

When I was first diagnosed in 2011 I didn't do my due diligence and fully relied on my medical professionals for guidance. Over the course of the next 5 years I had 4 biopsies. The first three showed either 1-2 cores 3+3 @ 5% or nothing at all. So the docs said I was a perfect candidate for AS. No mention of the need for an MRI. When I mentioned it to one doc he said they didn't offer it at the medical facility and that there was no evidence (at that time) that it would be helpful. So I let it go. On the fourth biopsy they hit one core 3+4 @ 25% and one 3+3 @ 5%. At that point I pulled the trigger. Post-RALP the pathology report showed 3+4 that had grown outside the capsule (pT3a). 5% volume. Close margins. No other adverse findings. Four years later I'm darn lucky no BCR.

Based on my experience I recommend to those considering AS to cross all t's and dot all i's. CAT, MRI, regular PSA's and/or genomic testing if at all possible. Limit the potential for surprises later on.

Godspeed.

Tj123
Thanks for the post ike to hear othets experiences
Unfortunately back in 2011 prostate mri was not widely acepted(folks correct me if iam wrong). The current piradd2 has been around since 2015. There were some issues with pirads1. Today we have a lot better tool than back then to
Anyway my original uro refused to give me mri so i moved on(thanks to this site) 2nd uro ordered mri ,catscan, xray and bone scan. The later 3 was probably overkill for the dx but like the idea of being cautous since been in the chemical ind. Mri is important cause it gives you a bigger picture but does have its limitations
Also regarding genetic testing current uro does not rely on it for low volume low grade sample cause not likely to be representative cause of small amt
Makes sense to me

Well thanks much
Take care

G6 does not metastasize but.....

New tumors can appear that are not G6 and/or a G6 can grow and get large enough to cause problems. Which is the whole point of the "active" part of AS.

Mufjem: you're on a good path, keep on it.