Ha, gotcha! You thought I was referencing urinary issues didn't you?
Actually, I am newly diagnosed this week and referring to the enormous PCa info flow I find myself in. In my professional advisory capacity, I often referred to myself as the 'control valve' in the firehose of information who's job value was to filter out the unnecessary bits of confusion in order to identify and allow clients to focus solely on the pertinent applicable-to-them data.
Well, in my first two days of shaking the hose so to speak, I see many helpful members here on site taking time to help new folks sift thru the chaff and I thank them for that. Obviously it makes gaining the knowledge necessary to make some tough decisions with confidence a little easier and a lot quicker. The Stickies and Archive searches have been very helpful but I'll not be bashful when I have questions. I hope if you have input you feel valuable (keeping in mind I am desperately trying to limit my learning to info which correlates specifically to my case), you won't hesitate to chime in. Thanks in advance!
Just some quick history: Age 59 and while there is no PCa in my family that I am aware of, I am not a total noob when it comes to cancer. My DW was Dx with anal cancer in Jan. and has just recently finished her rather grueling course of chemo/rad. We were waiting for her 1st post treatment PET scan (great news!
) when an elevated 5.65 PSA at routine physical earned me a referral to the Uro Doc. A month later a high velocity 6.67 PSA on retest and a DRE palpable node at right base were found. Talk about
good news/bad news, I am now angry that this may become our focus rather than her continued emotional recovery and physical well being. It is and we deal but, dang, the timing s-u-c-k-s.
Because urinary tests also showed increasing blood in urine, Uro Doc ordered cytology for suspicion of bladder cancer as well. Very thankfully, that came back "Negative for High Grade Urothelial Carcinoma" and I sure hope I don't have the 'low grade' version either, lol. So, now on to the TRUS BX which was a standard 12 core with two extra cores from the suspicious area. Here are the findings (if you've gotten this far, I do have questions after):
Jun’17 Final Diagnosis:
Summary of findings: Carcinoma is identified in specimens (A), (B), and (C)
(A) Prostate, right apex, needle core biopsy:
- Prostatic adenocarcinoma, conventional/acinar type, involving two (2) of three (3) cores (see comment).
- Gleason score: 3 + 4 = 7 (Grade Group 2; 10% Gleason pattern 4).
- Tumor quantitation: 10% of the total fragmented specimen.
(B) Prostate, right mid, needle core biopsy:
- Prostatic adenocarcinoma, conventional/acinar type, involving two (2) of two (2) cores (see comment).
- Gleason score: 3 + 4 = 7 (Grade Group 2; 20% Gleason pattern 4).
- Tumor quantitation: 90% (discontinuous) and 70% (discontinuous) of respective cores.
(C) Prostate, right base, needle core biopsy:
- Prostatic adenocarcinoma, conventional/acinar type, involving two (2) of two (2) cores (see comment).
- Gleason score: 3 + 4 = 7 (Grade Group 2; 20% Gleason pattern 4).
- Tumor quantitation: 90% and 60% (discontinuous) of respective cores.
(D) Prostate, left apex, needle core biopsy:
- Benign prostatic tissue.
(E) Prostate, left mid, needle core biopsy:
- Benign prostatic tissue.
(F) Prostate, left base, needle core biopsy:
- Benign prostatic tissue.
Slides examined: 6
COMMENT:
Foci of perineural invasion are identified in this case. The Gleason pattern 4 exhibits areas of cribriform morphology. Case has received departmental consultation on [deleted].
Grade Groups range from 1 (most favorable) to 5 (least favorable).
Epstein JI, Zelefsky MJ, Sjoberg DD, et al. A contemporary prostate cancer grading system: A validated alternative to Gleason score. Eur Urol 69: 428-35, 2016.
INDICATIONS FOR PROCEDURE/CLINICAL HISTORY: ELEVATED PSA
GROSS DEscriptION:
(A) Received in formalin labeled [deleted] and "right apex" are three tan core biopsies ranging from 0.6
x 0.1 cm to 1 x 0.1 cm. The specimen is entirely submitted in one blue cassette labeled [deleted].
Summary of sections: A1 - three pieces.
(B) Received in formalin labeled [deleted] and "right mid" are two tan core biopsies 1 x 0.1 cm and 1.2 x 0.1 cm. The specimen is entirely submitted in one blue cassette labeled [deleted].
Summary of sections: B1 - two pieces.
(C) Received in formalin labeled [deleted] and "right base" are two tan core biopsies 1 x 0.1 cm and 1.4 x 0.1 cm. The specimen is entirely submitted in one blue cassette labeled [deleted].
Summary of sections: C1 - two pieces.
(D) Received in formalin labeled [deleted] and "left apex" are three tan core biopsies ranging from 0.6 x 0.1 cm to 1.5 x 0.1 cm. The specimen is entirely submitted in one blue cassette labeled [deleted].
Summary of sections: D1 - three pieces.
(E) Received in formalin labeled [deleted] and "left mid" are two tan core biopsies 0.8 x 0.1 cm and 1 x 0.1 cm. The specimen is entirely submitted in one blue cassette labeled [deleted].
Summary of sections: E1 - two pieces.
(F) Received in formalin labeled [deleted] and "left base" are two tan core biopsies 1.4 x 0.1 cm and 1.2 x 0.1 cm. The specimen is entirely submitted in one blue cassette labeled [deleted].
Summary of sections: F1 - two pieces.
(Reviewing Pathologist and Testing Lab information deleted)
A shocker to be sure, but right now I am heartened that the biopsy shows involvement on the right side only. It does seem to me (based on some of others I've read here) that my summary is somewhat lacking in detail. Perhaps some of this info is found on the Uro's TRUS report, something I was not offered. Ie., I seem to recall hearing prostate size was 39 and that was considered fairly normal for my age, I assume that was measured during the TRUS BX.
In any event, let the case discussion begin. I know the
Grade 4 scoring, PIN and cribriform morphology toss me into High-Intermediate Risk Group [correction: Gleason 4 Patterns with cribriform morphology and PNI (perineural invasion) note typo, not PIN] will be important factors in my treatment decisions. Exactly how important and which to prioritize is still part of my learning curve.
So here are a few additional Q's that come to mind if you care to respond...
Q.) Overwhelmingly and regardless of initial findings, seeking a 2nd opinion for TRUS biopsy results is recommended here. But in order to be downgraded into a Low Risk AS approach, never mind subjective primary/secondary grading, but the very existence of each of the Grade 4, cribriform and PIN factors would need to be found completely in error. The odds of that must be so high, I wonder if it really is worth it. The benefit I suppose if it came back upgraded you would have that knowledge, but based on my early research I'm not sure that would change my treatment options anyways?
Q.) I believe 2nd opinion costs are normally covered by ins. in full and the responsibility of the patient to request/demand, right? Does one just call to arrange with the receiving lab first then instruct your Uro to forward records or actual tissue samples? Isn't the pathology slide info saved digitally nowadays? Has making this request created any later problems or trust issues with your local Uro or Onc Team down the road?
Q.) I'm trying to establish my starting baseline but there was no clinical staging offered at the biopsy results consult. Perhaps in light of my particular factors (potential extraprostatic extension, seminal vesicle invasion and, to much lesser extent, lymph node involvement), it is either quite obvious, simply to be expected or indeterminable until further testing? Whatever, I've come up with cT2b until further testing suggests otherwise, is that correct? Or am I underestimating and discounting the significance and potential likelihood that one or all of the bad factors will almost certainly come into play in the short term after further testing? Cautiously optimistic but...
Q.) In the past two days since my Dx, I have read numerous study papers and played around with enough nomograms suggesting that the bug has probably escaped the prostate and possibly the capsule to be alarmed, but I also believe the low PSA suggests it is still localized and not in the lymph nodes or other Mets. At least, that was my [very] late night conclusion before falling asleep, what did I miss?
Q.) Yes I am very concerned about
the 7 of 14 core positive, but especially when combined with extremely high core %'s and the other factors. I don't like when Dr.'s or PA's beat around the bush and throw around general terms like 'very treatable' while offering little detail. IMHO, this report looks to confirm (
not suggest) a very aggressive PCa that will require quick and aggressive treatment. Trying not to get ahead of the facts but there are a lot more experienced Survivors here and I value your interpretation as well. Just give me your thoughts straight, I'm a black and white numbers guy.
Q.) So I have Bone and CT Scans scheduled for a month out. On the scan orders, both are listed as 'Non-Priority', however, given the High-Int Risk do you feel I should be more pro-active attempting to get them scheduled sooner? In fairness, the scan(s) date was in part a function of my travel plans which have been in place before the TRUS and I would have only been able to move it up less than a week if I had no conflicts.
Q.) If these scan test have a high probability of seeing nothing, plus false neg/pos is typically prevalent with low PSA (<20), is there reason to think they will even be beneficial in my case? Should I push for color doppler test instead which I believe may be considered more accurate with my PSA level, and is that usually ok'd by ins co? If yes, do they require the Bone and CT before Doppler? Any other services or testing that I should inquire about
at this time that may not be brought up or offered by the typical 'this is how we do it' kind of practice?
Q.) Par for the course, I have consult referrals to med/rad Oncs in the week following the scans. Nothing said about
MRI fusion tests by the Uro, I do know Medicare will pay for MRI tests under age 60 before a TRUS but my Ins. will not. So is now the time to push for this and with who, the Uro or RadOnc Doc? I do live in a upstate NY with a lot of highly regarded (and funded) medical facilities within 2-3 hours drive, hopefully I'll find what I need close to home.
Q.) We can not afford to be blindsided by high treatment bill$. We are at $150k+ this year ($100k+ last month alone) for my wife's treatment, and the patient pay portion keeps climbing with no end in sight. How best to avoid financial surprises while, at the same time, advocating for the best and even cutting edge treatment options for oneself? We simply followed Dr.s orders last time, primarily because there really is only one single treatment path proven to be curative in her case. This PCa thing is waaay different, lots of room for surprises (including financial!) it would appear. Not in the mood to argue with some surly ins rep that has no skin in the game after the fact, so any wisdom on this is appreciated.
Sorry for the long first post, it sure is easy to get lost in time trying to research and plan your course of action. It's not easy for me to get personal in such a public forum setting. Unfortunately, I will need to depend a bit on you guys for input because my poor wife is, as she said, "just about
cancer'd out"!
Blue skies to all.
Post Edited (Notam) : 7/5/2017 8:16:59 AM (GMT-6)