Dazed and Confused

Posted by s00nerzfan @s00nerzfan, Aug 23 1:07pm

I met with my surgeon 8 days after prostatectomy for catheter removal. Discussed pathology report. Margins clear, seminal vesicles clear, lymph nodes clear. Gleason 7 3+4 (Grade 2). Also mentioned extra prostatic tumor invasion and intra ductal carcinoma but didn’t elaborate. The surgeon ordered a Decipher test (6weeks) and said he would see me in 90 days to check PSA and review Decipher results. Once we got home we took a closer look at the pathology report and researched the pathology Stage pT3a and intra-ductal carcinoma. We’re finding this to be very alarming and warrants an aggressive treatment strategy. We’re at a loss as to why they recommended a 90 follow up vs an urgent “all hands on deck” approach immediately upon receipt of Decipher results. Am I over thinking this? What am I missing?

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robertov | @robertov | Aug 27 2:20pm

I suppose they didn’t do a PSMA scan because I see no mention of it. Probably because insurance wouldn’t approve with an intermediate-favorable biopsy result. I don’t know enough about when PSMA scans can be done, but I would think given their pathology report you are now high risk. Urologists want to do surgery.
As far as not being a hack, I’m not so sure. A 2nd opinion may still be warranted.

edinmaryland | @edinmaryland | Aug 27 4:11pm

I hope some surgeons read these posts.
Like any profession there sure are great doctors out there that really care and really try to be there for the patients. However, there are definitely surgeons out there- as are described above, that have big egos and get defensive and evasive if the patient is not a 'W' for them
Some need to get off their high horses and try to consider what it would like to be diagnosed with PC and have to wonder about longevity and cancer returning with a vengeance.

brucemobile | @brucemobile | Aug 27 4:37pm

I am two weeks post op, the day I got my catheter removed my urologist was setting up an appointment to see an RO. My appointment is tomorrow, wasn’t real happy to hear there is more treatments to come but at least my urologist is taking the necessary steps to make sure I get the treatment I need

s00nerzfan | @s00nerzfan | Aug 27 6:26pm

In reply to @brucemobile "I am two weeks post op, the day I got my catheter removed my urologist was..." + (show)

I’ll be curious to know how long after your surgery your RO wants to wait to get a new PSA and Decipher test results, before starting RT. I’m hearing anything between 10-12 weeks.

Sending good vibes your way

surftohealth88 | @surftohealth88 | Aug 27 6:39pm

I can only say to you all - lucky you that you had a chance to talk to your surgeon personally and ask all of those questions. The first available date we got for our surgeon was NOVEMBER .
So... "Center of Excellence", sure 😑...

heavyphil | @heavyphil | Aug 28 7:21am

In reply to @surftohealth88 "I can only say to you all - lucky you that you had a chance to..." + (show)

Surf, your surgeon is totally useless now…who gives a flying *** what he thinks? You have the patho results so knowledge is power, right? Push to speak to Radiology…PUSH!!

heavyphil | @heavyphil | Aug 28 7:36am

In reply to @rlpostrp "Hello - Sorry to hear of your pT3a status. I am a pT3b status, and I..." + (show)

@rlpostrp

Hello - Sorry to hear of your pT3a status. I am a pT3b status, and I am in the same boat. These urologists always seem to have urgency to get you to the surgical table for the radical prostatectomy, but once they have the surigcal pathology report in hand, they take a "let's wait and see" mentality/approach.
I am less luck than you: I do have surgical margins (occurs in only 10-20% of cases..."lucky me"). I have EPE of course, left seminal vesicle invasion, and cribriform glands. At my 11-day post-op catheter removal, my urologist said: "it seems that despite your biopsied moderate risk 3+4 = 7 Gleason score, you have a fairly aggressive cancer, so we'll need to 'talk about' radiation in your next appointment (3 months later). I just had that 3-month first follow-up without discussion of radiation. He seemed pleased and focused on the fact that I had a 0.1 ng/ml ("zero") PSA, and that we'll 'get another PSA' in three months to 'see how I am doing'." This guy is no hack. He is part of a large urology group working in a 375-bed, highly regarded medical center in my area (southern California). I had the single-incision DaVinci Robotic-Assisted RP, but despite all of those confidence-building features of physician, facility, and surgical method, he has gone into "watch and wait" mode to see what my next PSA will be in mid-October, despite being a definitive pT3b.
If I had not had the EPE, surgical margins, Cribriform glands, and left seminal vesicle invasion, I'd say "OK...let's wait", but I am sitting here thinking "what am I missing here that makes him want to wait another three months... is he angry with me because I ask LOT of questions - like "what went wrong with you using the DaVinci method that caused surgical margins and cancerous tissue to be left in my body (he had built up the DaVinci method as state of the art perfection)?" And..."with it being a bloody mess during surgery, how can you be sure that both of my neurovascular bundles were in fact preserved (when discussing my severe sexual ED)?" I got blank stares with closed lip smiles on both of those. He was likely thinking: "F-off for asking me such pointed and accountability-based questions."
In retrospect, I often think that with what this has done to me with incontinence and ending my sex life, that I should have done like my dad and maternal grandfather who lived to 99 years and 96 years, respectively, WITH prostate cancer...neither had a prostatectomy. I had the surgery, and might not live another 5-10 years based on my pT3b status that comes with a high recurrence rate. Frustrating.

Jump to this post

RL, You don’t know if your father’s cancer was as serious as yours so don’t beat yourself up at your decision to go forward with surgery.
Also, the DaVinci doesn’t determine the size of the tumor or the margins- the cancer does. Positive margins many times means that they couldn’t remove more tissue without harming other structures.
In fact, I told my surgeon to pay no mind to my nerve bundles; if the cancer was in them - take’em out.
No man wants to lose his ability to have sex, but the cancer will kill you so what good is it to ‘spare’ the bundles and die in a few years with the ability to have a mediocre erection?
All that said, I TOTALLY AGREE that you should have adjuvant therapy right now and not wait for anything. Your surgeon can bask all he wants in his 0.1 PSA, but realize that you are already half way to 0.2 - just months after surgery.
Waiting is just a waste of time, IMO.
Phil

surftohealth88 | @surftohealth88 | Sep 17 2:22pm

In reply to @s00nerzfan "Thanks. I’ve consulted a younger RO at MD Anderson in Houston. He said it’s SOP to..." + (show)

It might be a SOP but upon further research I discovered that PSA falls by half every 3 days. So, whatever your initial number was, count days at which it should be 0.01 . For us it should be that number next week so we are doing PSA next week and than we will go from there. We wish to have adjuvant RT even if it is 0.01 since our Decipher is highest that can be and G 9 with Cribriform and IDC, plus EPE and iffy margin at one spot. If our pathology post RP was still 4+3 and no EPE we would be comfortable waiting for "ordinary" BCR.
If PSA comes back above 0.01 , than it is no brainier - RT should start immediately anyways.

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