Possible biochemical recurrence.

User

Posted 27 Sep 2021 at 23:27

How long is he suggesting you have the bicalutimide for?

John was in your position when he was almost 52 - okay, he hated bical but it was only for 6 months, it didn't stop him playing rugby or cycling or going to the gym and here he still is, with a PSA of 0.1 ten years later.

Some people find the bical side effects more distressing than ADT, others find the opposite. It isn't ideal but as a young man, your focus might perhaps be on getting to be an old man?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 28 Sep 2021 at 06:53

He is talking 2 years of bicalutamide oral.

User

Posted 28 Sep 2021 at 06:58

Originally Posted by: Online Community Member

Not sure if the formatting of this sit appears weird for everyone, but my earlier response seems not to be in order.

The onco is talking bical oral for 2 years.

He played down sides and said that I would maintain a sex life. You, however, suggest that John had a rough time.

Which of the many stated sides did John suffer?

Edited by member 28 Sep 2021 at 07:04 | Reason: Not specified

User

Posted 28 Sep 2021 at 08:42

Piers
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.

User

Posted 28 Sep 2021 at 10:02

I am currently running at about 1/3 your PSA 0.063. I have just had the letter from my second opinion at the Royal Marsden.

The letter stressed the importance of 0.2 being the trigger for salvage therapy and that this is based on data from the Radicals trial that shows no benefit to going any earlier. So it looks like the original choice many years ago of 0.2 for BCR has stood the test of time. When I see my usual Onco in 8 weeks (the one who recommends treatment before 0.1) I will ask him his opinion of the Radicals data. I will also ask him why he recommends prostate bed + lymp but the RM said probably prostate bed only unless the scan shows lymph involvement.

Re scans both my Onco opinions recommend a PSMA scan but acknowledge it may not show anything.

User

Posted 02 Oct 2021 at 09:03

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He said that he he didn't agree with the onco and that his advice is out of date.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.

User

Posted 02 Oct 2021 at 10:57

'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.'

I guess a number of us wonder whether we did the best thing, particularly where our original treatment does not entirely eradicate our cancer. The surgeon who headed the MDT in my case told me he would remove my Prostate if I so wished but thought I would be better off having RT as he doubted he could remove all the cancer. I took that advise and for a couple of years or so the result looked good. However, a small tumour was subsequently located in my Prostate and I began to wonder if I had gone for surgery, perhaps supplemented by RT, I would have avoided the need for HIFU which now needs to be repeated. Of course all this is academic because we are where we are and speculation can make you upset about your treatment choice so really serves no purpose.

As to survival at any price, this will depend on the way the individual sees it and maybe personal circumstances. I am now a full time carer for my wife and she would not want to go into a home so perhaps my threshold would be further down the line than it might otherwise be, although I do naturally pusue treatment options to still enjoy some of lifes pleasures. Then I know what a rotten way to go death can be from PCa and the time leading up to it. Better to die of a stroke or heart attack or perhaps something else!

Barry

User

Posted 02 Oct 2021 at 11:26

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.

User

Posted 02 Oct 2021 at 11:47

I am a little suspicious of your urologist - sounds to me like a man in denial that he could have left a bit behind. It will be interesting to see what the MDT comes back with. On the other hand, it was strange that the onco recommended bicalutimide rather than ADT - perhaps they are both a bit stuck in their ways.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Oct 2021 at 12:08

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.”

User

Posted 10 Oct 2021 at 09:26

Ok, I spoke to the surgeon last week and he took my case to the MDT.

The consensus is that I should not have radiotherapy to the prostate bed and instead wait till my PSA breaches 0.2, at which point I get a PSMA PET scan.

Why? Because my histology suggests a 35% probability of metastatic disease. Blasting away at the prostate bed and chemically castrating me may only serve to make me miserable, without benefit.

To be honest, I have throughout favoured a "do as little as possible" approach and the above continues with the theme.

I asked at point did the cancer metastisise(sp?), he said pre-surgery because the tissue removed was margin negative. I don't know enough about the subject to know if that is absolutely guaranteed. Intuitively, I can see how it may not be.

User

Posted 10 Oct 2021 at 12:24

If you were margin negative, the cancer must have already spread before surgery.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 10 Oct 2021 at 17:04

What are the chances of it spreading as a result of the biopsy?

I ask because for some reason the surgeon who did it took 45 cores. One of the surgeons I spoke to about the RP commented "what the **** did he do that for?". I am aware that track seeding is a risk with biopsies.

User

Posted 10 Oct 2021 at 17:24

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

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 10 Oct 2021 at 17:37

So a 65% probability that salvage therapy will give a durable remission, seems to align with the nomogram scores for your post of figures.

User

Posted 10 Oct 2021 at 17:43

I had a template biopsy.

Yes, 65% was what I read.

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

User

Posted 10 Dec 2021 at 19:13

Okey dokey, so here are the scores on the doors as of today:

21 Jan 2020 = 0.04
20 April 2020 = 0.04
24 July 2020 = 0.04
10 November 2020 = 0.08
15 December 2020 = 0.05
16 March.2021 = 0.08
15 June 2021 = 0.14
22 June 2021 = 0.13
15 September = 0.17
10 December 2021 = 0.28

That looks to me like the cancer cells are multiplying exponentially.

I have a referral for a PSMA PET scan next week.

Is that sort of increase to be expected, or should I insist that my wife buys one fewer Christmas crackers this year?

User

Posted 10 Dec 2021 at 19:30

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

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 10 Dec 2021 at 19:40

As I mentioned previously, there is a 35% chance that the cells are metastatic, apparently So there is a 35% chance of SRT to the prostate bed being a waste of time.

I am given to understand that at current PSA levels there is little risk attached to waiting for scan results.

User

Posted 10 Dec 2021 at 19:46

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

User

Posted 10 Dec 2021 at 20:00

I've had 2 x OAZ and have a booster on Sunday. Do they affect PSA?

User

Posted 10 Dec 2021 at 20:13

Piers

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

Thanks Chris

User

Posted 10 Dec 2021 at 20:16

Thanks Chris. Presumably a PSMA PET scan won't be influenced by PSA jabs.

User

Posted 11 Dec 2021 at 07:26

Originally Posted by: Online Community Member

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

User

Posted 11 Dec 2021 at 13:17

Hi Piers,

my experience is purely anecdotal, and has no statistical merit, but I'll toss it into the mix just in case it helps reduce your sense of torment. For a number of not very good reasons I have been on HT for over 18 months waiting for a treatment plan ( RT or RP)- first Prostap, now Zoladex and for the last 3 months a top up of Bical.

reactions: Hot flushes- yes. A nuisance but not life shattering. Bit of weight gain- about 8 lbs. Loss of libido- yep; but functionally ok (ish). Exercise- I did my first 2 marathons 3 weeks apart in October. Slow, but I beat the sweep-up bus, and I was far from last . All things are possible......

Best of luck

User

Posted 11 Dec 2021 at 13:34

Piers unfortunately they are the cards you have been dealt. I know it's no help to say there are hundreds of guys on here who would love your figures but it's true!

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.

User

Posted 11 Dec 2021 at 13:45

I was T3A, Gleason 8.

User

Posted 11 Dec 2021 at 15:06

I put your stats in here:
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).

User

Posted 11 Dec 2021 at 15:53

Hi,

That's a good reply above, SRT in early 2022 should be the target in my opinion and trying not to think about crackers at Christmas's future.

It would be better if your statistics were put into your profile so we can read your history.

I had some thoughts reading your psa list:

Your psa isn’t a constant progression with the December 2020 result dropping or was it the earlier one rising and it being flat from November to March. The September to December rise brought the doubling rate between June and Dec to 6 months but I wonder if that December test was a bit high. 6 months doubling should be good for SRT.

I once read a study which I think was in the Harvard Journal that concluded that a psa of more than 0.03 post op is indicative of a likely recurrence. There is one person on here who had early RT, but the guidelines are to wait for 3 increases and over 0.1 and that gives a trend to assess treatment. Nowadays there are more psma scanners that can find much smaller signs. The guidelines still say do RT without an MRI scan if the trend is promising. You can look it up in the NICE guidelines but it doesn’t say much.

I think if it had been me I’d have wanted to go to Oncology perhaps in November 2020 or last June when it looked like the next test would be over 0.2. It’s a fine judgement and I’m not sure if you’ve actually lost much value as doing a psma scan too early can mean the scan sees less. Your doctor seems to be seeing you enough but I’d be hoping to have RT in early 2022.

A nurse once said to me when I was worrying about what might happen, 'don’t get ahead of yourself'. It’s easy to say though. It stuck in my mind at the time.

Most people don’t want to have their sex lives spoilt and some who have only the option of hormones put it off as long as possible preferring their Quality of Life. If it was me I’d want to do whatever it took if I thought it meant living longer, we’re all different and none of us can be certain what the outcomes will be with whatever choice we make.

So I'd aim for an SRT in early 2022 after your scan and make your case for it.

All the best,
Peter

Edited by member 11 Dec 2021 at 16:34 | Reason: Not specified

User

Posted 11 Dec 2021 at 17:18

Originally Posted by: Online Community Member

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

User

Posted 11 Dec 2021 at 17:44

Originally Posted by: Online Community Member

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.

The flip side of that is - avoid HT now and by the time you are 60, there is a good chance of being incurable and on HT for the rest of your shortened life. My father-in-law was T2a G7 N0 M0 and refused surgery, RT or HT; he survived for only 4 years which was a shock to us all.

I do get the 'avoid HT' thing; John had salvage RT with HT and hated the HT so much he stopped it after 9 months. But that was 10 years ago and he is living his best life!

I wonder if you are placing too much importance on the negative margins - we have had plenty of men through this forum who had negative margins and still had a recurrence in the prostate bed - microscopic spill isn't always going to show up as a margin. Your T3a increases the risk of recurrence in the pelvic area - did the pathology make any reference to extra-prostatic extension?

Edited by member 12 Dec 2021 at 01:18 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 11 Dec 2021 at 18:16

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

User

Posted 11 Dec 2021 at 19:30

No extra capsular extension, no.

User

Posted 11 Dec 2021 at 21:51

Now I'm confused you can't have a T3A without at least 1 Extra prostatic extension?

User

Posted 12 Dec 2021 at 01:20

My thoughts also, Franci but it seems that hasn't been addressed in the recent discussions with urologist?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 12 Dec 2021 at 06:56

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

User

Posted 12 Dec 2021 at 09:04

Ok I have done it with the figures above and a doubling time of 6 months and it now agrees with your results and your surgeon / onco

65%. Chance of cure or 35% chance SRT won't work.

It's all kind of mute now as you are getting a PSMA scan, fingers crossed it shows something otherwise you will have the same dilemma.

User

Posted 12 Dec 2021 at 09:30

Originally Posted by: Online Community Member

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

User

Posted 12 Dec 2021 at 11:00

Your surgeon is a pessimist!

The problem is the closer your PSA gets to 0.5 and above the less your chances.

I really hope the PSMA scan finds a target.

User

Posted 12 Dec 2021 at 11:10

Dodgy data? You had a positive margin, extraprostatic extension and suspect lymph nodes!

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!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 12 Dec 2021 at 11:34

Originally Posted by: Online Community Member

How do you know the surgeon made an error? There could have been distant metastases at the time of surgery. The fact that there was negative surgical margin rather suggests that, doesn't it?

As for the surgeon giving me advice: He took my case to a MDT, who unanimously agreed that I should not have immediate SRT.

What I mean by accessible: If it's in a rib, for example, they can blast it with radiotherapy. If it is in my brain, they can't, as far as I know. Though for cancer to have found a target that small seems unlikely.

On other business, does anyone know why the formatting on this site doesn't work? Quotes don't show as such.

Edited by member 12 Dec 2021 at 11:44 | Reason: Not specified

User

Posted 17 Dec 2021 at 19:31

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.

User

Posted 17 Dec 2021 at 20:57

Originally Posted by: Online Community Member

How do you know the surgeon made an error? There could have been distant metastases at the time of surgery. The fact that there was negative surgical margin rather suggests that, doesn't it?

As for the surgeon giving me advice: He took my case to a MDT, who unanimously agreed that I should not have immediate SRT.

On other business, does anyone know why the formatting on this site doesn't work? Quotes don't show as such.

A positive margin is surgeon error - that’s why they have to publish their data. The EPE and suspect node are bad luck rather than error.

The quotes and formatting of your replies look fine - it may just look a bit weird to you when you first submit.

Edited by member 17 Dec 2021 at 21:04 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Dec 2021 at 23:06

Originally Posted by: Online Community Member

How do you know the surgeon made an error? There could have been distant metastases at the time of surgery. The fact that there was negative surgical margin rather suggests that, doesn't it?

As for the surgeon giving me advice: He took my case to a MDT, who unanimously agreed that I should not have immediate SRT.

On other business, does anyone know why the formatting on this site doesn't work? Quotes don't show as such.

A positive margin is surgeon error - that’s why they have to publish their data. The EPE and suspect node are bad luck rather than error.

The quotes and formatting of your replies look fine - it may just look a bit weird to you when you first submit.

I wasn't positive margin.

User

Posted 18 Dec 2021 at 00:17

Yes, I realised that; your nodes were clear as well. I was just saying that a positive margin is a surgical error but EPE isn't.

Edited by member 18 Dec 2021 at 00:18 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 Dec 2021 at 08:51

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.

User

Posted 18 Dec 2021 at 17:44

Piers12, may I join your thread as someone on a rather parallel journey?

I had surgery in 2016, and PSA was under 0.05 (the detection limit for the hospital lab) for 2 years then very slowly started rising. Even when it reached the threshold of 0.2 there were a couple more 3-monthly tests to check it was still rising before referral to an oncologist.

It is interesting that different hospitals (or maybe different doctors) make slightly different decisions about the best treatment. Both the surgeon and oncologist thought a scan was unlikely to be informative at the current PSA level (0.31 a month ago, prior to the oncology appointment). But also that the prospects were much better to have radiotherapy sooner rather than later - apparently PSA under 0.5 with doubling time of over 6 months gives the best chance of success. They clearly judge that for me the recurrence is likely to be located in the prostate bed; probably because there was about 2 mm of positive margin according to the path report post-surgery.

There seems to be some discussion with these statistics about whether to have hormone therapy alongside radiotherapy, and I accepted the advice of the oncologist - who after all is the expert on radiotherapy - to have it. I started on bicalutimide next day, with a Zoladex injection 2 weeks later and stopping bicalutimide 2 weeks after that (this week). Apparently being on bicalutimide reduces the risk of immediate side effects when starting Zoladex. Radiotherapy is planned after 3 months of Zoladex, with it continued for 3 months after.

So it is a bit of a trip into the unknown, and I have done a lot less agonising than you but simply jumped in quickly when advised. So far no drastic side effects from the hormones, though I do want more sleep and EF is clearly affected (it was already tadalafil-dependent). The nurse giving me the Zoladex injection said I should expect a growing waistline though.

Your PSA is increasing a bit faster than mine, so you will need to make a decision soon I suspect. Good luck!

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