Pathology report - bahhhhh :/

Thanks Phil for encouraging words < 3.

This morning we asked for further explanation of the findings since I was confused with wording of some other things also.
We got in contact with their pathologist. According to her words there was focal EPE on one spot at posterior apex and cauterization tip passed very close to the true margin. Because that edge is burned so close to tumor extension there is inked edge present as it should be but above that cut tissue is also burned and they could not see extensions there and they were probably burned IF there were any microscopic extensions there . She said that just for technical reasons they had to write it in that way, but that they are almost sure that nothing is left behind but burned IF it even was there. Looking at it as it is now it looks like there are no extensions on the surface that are out of ink but they have to disclose "close call" so there is more vigilance in follow ups.
BUT from the other side since they found focal EPE it is considered a breach and than cancer is now staged T3 even though there is nothing in seminal vesicles, blather neck, adipose tissue etc etc.
Gleason- it seems that it was upgraded since IDC was definitely observed and confirmed, and there is a small note that I missed in my panicky state that says- "IDC feature INCLUDED in Gleason score." That would mean that it became 4+5 just because IDC was confirmed and as aggressive structure pushed Gleason up. I do not see how it is a "new" thing when original biopsy stated cribriform and IDC, but you know what , this is all nuts anyways , this whole PC production , as we know. Perhaps the Full Moon phase will change outlook and future findings 😤 and some Oracle will now better then them what is happening with sacrificial gland. 🧝‍♀️
Big cribriform NOT mentioned, so I guess that part stayed 4 as it was.

We are now asking for somatic testing since we wish now to do things ahead and not always somehow fall through medical cracks 😡. I am so angry I can not even tell you 😖

Anyhow - thanks Phil and everybody else 💗 for listening to my venting and rambling , I am on the verge of exploding and /or crying whatever happens first ... 😢

Hi, just love your positive energy and grit and the way you are supporting your husband. You are a role model to me! Stay the same and everything will turn out great! God bless!

Surf, I'm sorry that your husbands cancer was upgraded, nobody ever wants to hear that. You have been highly proactive on his behalf, being so very active on this site for so long before the surgery, I'm sure you already have a very good grasp on what's next and how to move forward. You both will be in my thoughts!

Venting and rambling is what we're here for.

Thanks Survivor for encouraging words, : )),
but I spent all of my time here trying to help members with non cancer related questions and offering emotional support. Learning about Gleason 9 treatments was not even on the periphery of my "radar". I finally got decent grasp about 4+3 unfavorable and than this curve-ball hit us out of the blue. So no, I do not know where to start or what to do, but will manage somehow with help of more experienced members here who will guide me and help, I am sure of it 🥰 the same way they pulled me through my initial shock of PC diagnosis of 4+3 with cribriform.

Yeah, I get it, believe me. I felt the same feelings of rage and disappointment when it was revealed to me - 4 YEARS after my surgery - that the surgeon’s notes indicated a ‘tiny’ break in the capsule…WTF??? A TINY BREAK!??
So as my PSA is slowly ticking UP, and I am asking the urologist for a referral to an RO to prepare myself for the inevitable, he’s been telling me to relax because my rise could be caused by this or that…all the while knowing about this ‘tiny’ breach…huh?
When I exploded he told me - “Hey, the margins were negative! You’re good! It’s the margins that are important”.
Well, obviously not, OK? Either the margins were not negative, they weren’t important or the pathologist was blind…
But I’m not telling you this to show incompetence, ineptitude or wishful thinking on the urologist’s part.
I tell it because none of it really matters in the long run. What will be will be…
We want CLARITY, we demand words like positive or negative; we crave phrases like ‘no suggestion of’ or ‘no uptake evident’…We become like the Cowardly Lion repeating the mantra ‘I DO believe in spooks, I DO believe…’ We want to fall back on some ‘undeniable’ fact or test result to put our worries to rest; but we can’t.
It’s all educated guesswork and being on this forum finally opened my eyes to that scary truth. You’ve been here long enough to hear all of it: a great patho report that checks off all the boxes, but a recurrence a few years later. A bad report and still no sign of recurrence decades later…can a sane person even begin to figure this out???
So let me just say in closing that the only real truth is: time will tell - time and PSA. Get all your genetic testing done to cover all your bases, but even then nothing is guaranteed; just another data point which can be argued by the experts until our eyes glaze over…
For me, the only thing that is certain is the uncertainty and like the Cowardly Lion I too mumble my mantra: “Who knows…who knows…who knows…”
Phil
Best
Phil

Can you send some of your husband's optimism my way. Lol. You're right. With IDC and Cribriform it was an excellent choice to go with surgery. With his GG they may suggest radiation to bed and pelvic lymph nodes after he heals from surgery. You have a few months to think about that. From my understanding back in the early days of RALP this was standard treatment. However, as time progressed they realized radiation wasn't needed in all cases after surgery. They could actively monitor PSA and if started to creep up apply SRT then to bed and more recently pelvic lymph nodes. If the doctors recommend radiation for your husband and you don't want it, you could ask for PSA tests each month instead of the standard one every 3 months. My friend did this as he had a GG8. If his PSA hits .1 then you can begin SRT.

Thanks Phil 💗- it is exactly THAT !
You covered every single trail of thoughts that one has in this chaotic situation and every possible emotion 😟. We all are just pawns of destiny moved here and there, back and forth and kicked off the board of life the moment "all seeing eye" blinks, it seems. It is all so random that it is maddening. I guess PC truly represents a life in a nutshell, or shall we say in a "life in a gland capsule" 🤨. It all can go this or that way on its own whim. As a person who never acts on a whim and has everything thought over multiple times (perpetual Libra) curve-balls are disheartening and scary to no end. 🥺 I feel like somebody pushed me back under the water the moment I climbed on very fragile tiny boat that I hardly constructed out of information scraps collected for 5 months.
Thank you Phil for finding time to write, means a LOT 🤗

Thanks PerryChristopher for comforting words 💗 !
Yes, I also wonder where I can tap off the optimism lol, but in over 40 years I did not manage to find a valve 😆 ! He has a magic capability of just "blocking" background buzzing and concentrate on only positive things. If there is 20 % of chance for cure, he would concentrate on that number and that is how he functions in general. That is wonderful way to keep sanity BUT than one tends not to see negative thing lurking and not taking necessary preventative steps. He himself recently said that he would be a "goner" long time ago if he did not have me. So yeah - we somehow live as one symbiotic organism 😋, and I wish that one day we just pooffff together out of this ridiculous world.
Thanks so much for giving me info about possible protocols in this situation and how they changed over time 👍. Yes - we have some time to think about this new scary situation and to plow through studies and such 🤓 and thanks for idea about doing PSA more often !
Wishing you all the best and may your PSA go down to 0.01 and stay forever there in spite of everything 🍀 👍😊

hang in there surftohealth
part of the battle against cancer seems to be' find it and kill it' over and over again. I -like you and your husband maybe- have taken a stand against PC- throw away the prostrate and much of the cancer with it. If more emerges we go after it as best we can. The science is evolving which is really good. maybe down the line 30 and 40 year olds can get fantastic treatment that eliminates PC in its tracks. However, we are still way ahead of the generations before us. I think it is good that science is on the hunt for pc and has better tools to do this than it did a few decades ago.

a long road, hang in there

Ed