First Post Biopsy Consult

[Mpls]

I'm grateful to have found this network. I've spent many hours over reading your posts and replies, and learning from you all. Thank you.

I'm 59 years old. Both my father and brother were diagnosed with PCa in their late 50s. I did a genome test for my family some years ago and learned I carry the ATM gene.

I've been getting PSA tests since turning 40. Since 2017, my scores have been gradually increasing from 2.3 ng/ml to 3.3 to 3.6 ng/ml in 2023. A 4K score of 5.1 was logged in late June with a total PSA of 3.41, free PSA of 0.87 and 26% free PSA.

In late July, following the advice of my Urologist, I got an MRI of my prostrate w/wo IV contrast. Two PI-RADs 3 lesions were identified. Here are the specifics:

Lesion 1.

A 2.3 x 2.1 x 0.8 cm area of ill-defined T2 hypointensity posteromedial and posterolateral right peripheral zone mid gland and apex.

T2 appearance: Diffuse mild hypointensity.

Diffusion-Weighted Imaging: Focal hypointense on ADC and/or focal hyperintense on DWI.

Enhancement: Negative.

Prostate margin: No involvement.

Diffusion abnormality meets PI-RADS 3.

Region of interest created for biopsy and/or follow-up.

Lesion 2.

A 2.1 x 1.8 x 0.6 cm area of ill-defined T2 hypointensity posteromedial and posterolateral left peripheral zone mid gland and apex.

T2 appearance: Diffuse mild hypointensity.

Diffusion-Weighted Imaging: Focal hypointense on ADC and/or focal hyperintense on DWI.

Enhancement: Negative.

Prostate margin: No involvement.

Diffusion abnormality meets PI-RADS 3.

Region of interest created for biopsy and/or follow-up.

TRANSITIONAL ZONE: No suspicious focal finding in the transitional zone. Mild stromal and glandular BPH.

No seminal vesicle invasion.

No pelvic lymphadenopathy.

No lesions in the visualized bones.

PROSTATE GLAND VOLUME: 45 cc

These results triggered a prostate biopsy. I got that done last week. I discuss the results with my Urologist tomorrow. Lots of details here but here is a synopsis: 14 cores, several targeted specifically at the lesions. All that threw up red flags -- there were 8 of them -- were Grade Group 1 (Gleason grade 3+3, score 6). Percent tissue involvement included two at less than 5%, two at 10%, one in the 20 percentile, 1 in at 30% and two that scored 40%. Multifocal perineural invasion is present.

I've learned that I do not need to decide right away. I've also learned that it may be advisable to request a second opinion on the biopsy results (I've been pondering the advice of sending it to John Hopkins). On biopsy day, I brought up Decipher and my Urologist seemed amenable to it, pending results.

I live near the Mayo Clinic in Rochester, MN, although I am not currently a patient, so ruminating on that.

I wonder how accurate my biopsy results are, wondering if my 3+3s are really 3+4s, or something other in either direction. I've read posts about post surgical upgrades.

I'm anxious about all that ATM stuff, and how those of us with this rare gene type are more susceptible to aggressive PCa. I should note here that my living brother had Gleasons in the 9s and has had aggressive treatment -- the battery of prostectomy, radiation, ADT, etc. My deceased father did not die of PCa (and was a regular Lupron receiver).

I'm inclined to want to act while a window exists to take action (someone said, while the cows are still in the barn...I relate to that). I'm also in tune with the studies about over treatment of PCa, and how the Grade Group 1 patients are especially called out. I can relate to how many just want to get past the diagnosis.

I want to hear first what my Urologist has to say, so I plan to very actively listen. I've been satisfied with his care to date. I'm inclined to do one year (or less if the case may be) of AS, thinking that'd be keeping the PSA checks every six months, getting the Decipher test, requesting a second read of my biopsy results, getting another scan and then set of biopsies at the 9 month mark.

It is open enrollment, so I've been contemplating a move that makes Mayo in Rochester more accessible but on the fence on this.

Any thoughts you might have I very much welcome. Thank you for your consideration.

[Tall_Allen]

PNI and ATM+ may mean less time on AS:

prostatecancer.news/2018/03...

[Mpls in reply to Tall_Allen]

Knowledge is power. Thank you. I'm trying to not read into your reply that, with my specifics, you think AS is the wrong move.

[Tall_Allen in reply to Mpls]

Good, because I don't think it is right or wrong for you - I don't know you well enough to make that determination for you. It is something to consider, though.

[Mpls]

Tall_Allen, might you have some names of Mayo Rochester surgeons to consider? Thinking of all options, and a wider time horizon. I have heard of Dr. Karnes. Thank you much for responding to my post(s).

[CancerConcierge]

I think a second opinion from Johns Hopkins is very appropriate. My husband was diagnosed with bladder cancer in 2020 and his high grade cancer was downgraded to low grade on the Johns Hopkins second opinion which dramatically changed his treatment plan.

All his prostate biopsies in the past three years with positive cores have also been sent to Johns Hopkins.

His experience with active surveillance, imaging and biopsies has been problematic.

Since 2011 (until August 23) he has only had two cores from four or five biopsies showing a tiny amount of gleason 6 PCA.

Last year he had a 22 core MRI fusion biopsy, with all cores benign, confirmed by Johns Hopkins. For context, his PSA was 29 at the time of his biopsy last year..and he had a PIRADS 5 lesion. He was told by the resident (Mayo) who did his biopsy that he could consider skipping MRIs moving forward. His elevated PSA was attributed to inflammation and chronic bacterial prostatitis.

Husband was handed off to a PA who treated him with long term antibiotics...His PSA only lowered several points after 6 weeks of bactrim and actually went up 3 points after four weeks of CIPRO...PA ordered scans to have him restaged ...Early June MRI showed two PIRAD 5 lesions, larger than the previous year...he couldn't get scheduled for a transperineal MRI fusion biopsy( his first transperineal) until August 15. The week before the biopsy his PSA was 46.6. ....8 of 20 cores had PCA, five GL 3+4, two GL 4+3s and one GL 5+ 4. The higher grade lesions were not identified on the MRI two months before the biopsy.

He is being treated with Proton Radiation and ADT...his cancer is considered very high risk.

Recommendations based on his experience:

-Be exceedingly assertive.

-Ask for a transperineal biopsy and/or a saturation biopsy , if another biopsy is recommended. 14 cores seems insufficient.

-8 positive cores out of 14 seems fairly high volume , makes sense to be very vigilant.

-If you decide to get treatment, it's good to have access to the best insurance you can afford. My husband and I are on medicare. Mayo does not accept Medicare Advantage plans. We will always keep our traditional Medicare with a supplement so we can continue to be treated there. ( only hospital in Arizona with Proton Beam technology) You are younger, so the best commercial plan you can afford that lets you pick your providers and that Mayo contracts with may be very wise.

Best of luck moving forward!