Possible biochemical recurrence.

He is talking 2 years of bicalutamide oral.

Got your PM. I can't reply as I don't have sufficient privileges. If you want to send me your phone no I'll get you the details.

Okay, I had a consultation with the surgeon yesterday and discussed with him the advice of the onco.

He said that he he didn't agree with the onco and that his advice is out of date. There is a 1/3 chance that my disease is already metastatic and, if it is, blasting away at the prostate bed and administering hormone treatment will achieve nothing outside of making me miserable.

Evidently what happens is that men follow that course of action and see their PSA drop to undetectable, only to see it rise again after the cessation of HT, because the PSA wasn't ever coming from the prostate bed.

He is still saying that I should have a PSMA PET scan at 0.2 and hope that it shows something. If it does, target the area. If mets later present elsewhere, have a go at those. I won't have had a lifetime's dose of radiation to the pelvis. If it shows nothing we need to talk again.

He is discussing my case with a MDT this week and will report back.

I also asked him what the natural history of my disease would be without treatment. He said that if I would otherwise have lived my normal lifespan, that the cancer would at some point overtake me an kill me. But it would probably be many years before that happened.

Since the meeting I have pondered what would have happened if I had never had an RP. How long would I have lasted? How long might I last if I take no further action?

I am not yet persuaded that "survival at any price" is the correct course of action.

Dying of something else is definitely a consideration!

I am slightly concerned about messing up some of my remaining years of vitality with  HT, when all I would be missing is my twilight years when my health may be crappy anyway.

I think the bicalutamide plan was to preserve as far as possible my sex life.

The urologist said however that it would still sooner or later put paid to any plans of rumpy-pumpy.

You may be right about the urologist. A surgeon once said to me “Do you know the difference between a surgeon and God? God understands that he is not a surgeon.”

There is very little evidence to support the idea of needle tracking from TRUS biopsy. There are a very small number of alleged cases in USA as a result of template biopsy but I don't think anyone has been able to prove that it actually happens. If it did happen, the patient would have cancer cells along the path that the biopsy needles had travelled, not elsewhere in the body like lymph nodes.

You have never mentioned what kind of biopsy you had but 40-50 cores is not unusual for a template biopsy. 

Edited by member 10 Oct 2021 at 17:28  | Reason: Not specified

I had a template biopsy.

Yes, 65% was what I read.

Edited by member 10 Oct 2021 at 18:05  | Reason: Not specified

Your doubling time is a little over 6 months, which indicates active cancer but not rampaging cancer. If the doubling time was 6 weeks, there would be more urgency to deal with it. Hopefully your scan will give some clarity although if you were my husband or dad I would still be pushing for salvage RT. Your PSA is behaving like classic cells in the prostate bed; I am a cynic but I think it is hard sometimes for a surgeon to accept that possibility as it is a negative on their outcomes record. The sooner you can see an oncologist to discuss options, the better.

Edited by member 10 Dec 2021 at 19:32  | Reason: Not specified

Piers 

Similar to where I was four and a half years ago. Have a look at my profile to see the PSA pattern. When did you have your covid jabs and what were they.

I was only Gleason 7 but did have positive margins and extra prostatic extension. Get the full amount of crackers.

Be interested to hear how your scan goes.

Thanks Chris

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 07:26  | 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 17:25  | 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 20:28  | 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 06:58  | 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 09:45  | 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!

I had a PSMA PET scan yesterday. The results are in today and I've spoken to the consultant already.

1. No abnormal PSMA uptake in the prostatectomy bed, though adjacent urinary bladder reduces sensitivity in the region.

2. No significantly PSMA-avid or enlarged lymph nodes.

3. No significantly PSMA-avid or sclerotic bone lesions.

4. Symmetrical gynaecomastia. Mild colonic diverticulosis. The remainder of the CT adds no further clinically relevant information.

The consultant said "it's there somewhere, the scan just cannot see it. We'll try again at 0.4". He went on to say that until very recently this would have resulted in EBRT to the prostate bed. But now they prefer to see evidence of the location and then choose which sort of radio therapy to apply.

Interesting about the diverticulosis and gynaecomastia, though. I have gut problems that fit with it and despite being quite fit and fairly lean I can struggle with fat on the pecs. I might see if I can get that looked into.

I wasn't positive margin.

Anyway, the scan results are good and bad news.

The bad news is that we still don't know where it is. It means more testing, more uncertainty and it is still quite difficult to plan my life for the next few years. At some point I am going to have to put my life on pause to sort it out.

The good news is that I am not riddled with cancer.

I am not sure what the future will bring. But I will follow the facts more than guesswork, as far as possible.

I interviewed a number of surgeons before having my RP. All bar one wanted to strip out everything in sight. One however was confident to do a minimally interventionist operation. He is one of the leading surgeons in UK.

Maybe if I had agreed to more aggressive surgery I would not have had a recurrence. But there is no guarantee of that.

Having assumed some risk with my RP, I will probably do the same with the follow-up. 

Currently my sexual function is not far off pre-RP and I don't have to use drugs or a band anymore.

I tend to take risks generally and mostly it pays off. Let's see whether it will with prostate cancer.

That is reasonable, I know it should be <0.1 but not rising very quickly is ok.