Possible biochemical recurrence.

Piers 

It is being frequently mentioned but I don't think there is any documented evidence. 

Thanks Chris

Something else occurs to me here. The surgery was margin negative, which reduces probability that it's remaining cells in the prostate bed. I imagine that is why they are saying that there's 35% probability of mets.

I have to say that I am tormented by the prospect of hormone therapy. I have read about the side effects and pretty much all of them I suffer with already.

Running hot - check. 

Weight gain - I have to work massively hard to stay slim already.

Erectile problems - obviously.

I am given to understand that it can take a year to recover from hormone therapy, which would leave me at the age of 60. It would be robbing me of my last years as a young (ish) man.

Edited by member 11 Dec 2021 at 08:26  | Reason: Not specified

You still have a crack at curative treatment!

Negative margins is good regardless it means your tumor was straight forward and contained enough for the surgeon to remove cleanly.

Yes a BR after negative margins isn't good but statistically (check the MSK nomgram) it only very slightly worse than positive margins. What impacts the success of SRT way more is staging T3A or lower and Gleason grade.

Just research the topic, make a decision on the treatment (or not) that you want and discuss this with your onco.

You can do no more and it will ruin your life whittling about it.

https://www.mskcc.org/nomograms/prostate/salvage_radiation_therapy

It says 81% chance you will still be in remission 6 years after SRT. So better than 4in5 chance you don't need to worry for at least 6 years (afterSRT).

If I have completed it correctly, I get 64% chance with hormone therapy. 40% without.

That's a bit rubbish.

I've updated my profile. Please let me know if I need to add anything else.

Edited by member 11 Dec 2021 at 18:25  | Reason: Not specified

Piers

As I posted earlier in this thread, our PCA stories seem to be on parallel threads. My pathology post RARP was negative margin but with extra-prostatic extension. Prior to the surgery I had a PSMA scan which gave me the all clear that the cancer had not spread outside the prostate. I was very relieved by that news.

My first PSA test post op came back @ 0.04. Not the result I , nor my surgeon, was happy about. We decided to just keep an eye on things and see what happened. A steady increase followed. When it hit 0.1 I had hopes that, like Lyn's husband, it would stabilise around there. My onco @ Royal Marsden had other ideas and told me that, in his opinion I would be coming back in for SRT at some point in the future.

When my PSA hit 0.18 he hauled me down to London for a second PSMA scan which revealed an 11mm lesion on one of my pelvic lymph nodes. Nothing detected in the prostate bed. My onco did say that he was pretty certain that my surgeon would have done a proper job so that did not come as a surprise.

I am now on Zoladex and have my first appointment at the QE in Birmingham on Monday to discuss the way forward. Somewhat unusually I do not appear ( as of yet) to be getting too many side effects. No hot sweats, no moobs, can't tell with my weight as i like a drink and my food and my weight tends to yoyo during the year. ED has been an issue and that function had not returned before I started the Zoladex. Simplistically the question I ask myself is " shagging or breathing? which do you prefer" And I know my answer.

If the onco suggests SRT I am pretty certain that I will take that option.

Edited by member 11 Dec 2021 at 21:28  | Reason: Not specified

Sorry, I am misleading everyone with dodgy data. Here is my histology:

Specimen B: prostatic fat, anterior
Piece of fat measuring 45 x 30 x 8 mm. All embedded in four blocks.
Specimen C: prostatic tissue, right NVB
Piece of fatty tissue measuring 10 x 3 x 2 mm. All embedded in one block.
Frozen section:
A1 = frozen section, right apex - negative
A2 = frozen section, right base - negative
A3 = frozen section, left apex - negative
A4 = frozen section, left base - one gland at red ink
Verbal report given to surgeon by Doctor at 16:05 on 13th
November 2019.
Microscopy:
Adenocarcinoma present: Yes, acinar
Gleason score: 4 + 4 = 8
Tumour size and distribution: 22x18mm, right mid to posterior.
There are an additional six foci of acinar type adenocarcinoma, Gleason score 3
+ 3 = 6, ranging in maximum dimension from 2 to 13mm and involving right
anterior and mid, and left anterior and mid zones
Extraprostatic spread: Yes, right posterior (7mm in width, 1mm in
depth, block A17)
Bladder neck invasion: No
Seminal vesicle / vas invasion: No
Lymphovascular invasion: Suspicious foci present
Page : 2 ** CONTINUED ON NEXT PAGE **
!"#$%&"'#( )$*&(+ ,-. /0%%(# !1#((1+ 2$34$3 5/,6 78. 9(:; -<- =>?7 @-A, BBBC"D0:0E$#01$#'(&CD$C*F
PATHOLOGY REPORT
Patient : Piers 12
Unit No : Xxxxxx
DOB : 
Sex : M 
Ref.Num.: T

Mnemonic: 
laboratory No : 
Requisition No :  Report Date: 28/11/19
Date of receipt : 
Perineural invasion: Yes
Apical margin involved: No
Base margin involved: No
Circumferential margin involved: No
Urothelial neoplasia present: No
Anterior prostatic fat: Not involved. There are three small benign lymph nodes
(0/3)
Part of right neurovascular bundles: Not involved
(Diagnosis):
Prostate, robot-assisted radical prostatectomy:
Acinar adenocarcinoma, Gleason score 4 + 4 = 8
Margins clear
Staging (TNM 8th ed.): pT3a pN0
Reported by Dr  27/11/2019
Signed By  - 28/11/19
Page : 3 ** END OF REPORT **
!"#$%&"'#( )$*&(+ ,-. /0%%(# !1#((1+ 2$34$3 5/,

Would anyone be kind enough to enter my data into the nomogram, to see if I cocked that up too? I am currently not confident that I have entered the data correctly.

Edited by member 12 Dec 2021 at 07:58  | Reason: Not specified

Those stats are what my surgeon gave me when we last spoke. It is the reason he advised not to have SRT immediately - there is a 35% chance that it will be an unpleasant waste of time.

I am hoping to get a scan this week. What are the possible outcomes?

1. They cannot find the location of the problem cells.

Action: Try again when the cancer has progressed.

2. The scan shows cells in the prostate bed

Action: SRT with hormone therapy (or not).

3. The scan shows cells somewhere else that is accessible.

Action: Radiotherapy to that area with hormone therapy (or not).

4. The scan shows cells somewhere not accessible.

Action: Do nothing and later have hormone therapy.

Have I covered everything?

Edited by member 12 Dec 2021 at 10:45  | Reason: Not specified

Yes, the future options menu seems about right if a bit linear - other options could be

a) scan is clear so have the pelvic RT anyway based on probability

b) scan is clear so wait a few months and try with a different tracer

c) scan shows multiple sites so choice becomes a combination of HT / enzalutimide / apalutimide /chemo

Not sure what you mean by accessible? Cancer cells will be accessible wherever they are.

Still don't feel comfortable with it being your surgeon who gives you this advice; you need to talk to an oncologist rather than the person who made the error!