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Possible biochemical recurrence.

User
Posted 12 Dec 2021 at 12:34

Originally Posted by: Online Community Member
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!

 

 

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 12:44  | Reason: Not specified

User
Posted 17 Dec 2021 at 20:31

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 21:57

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.

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.

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 22:04  | Reason: Not specified

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

User
Posted 18 Dec 2021 at 00:06

Originally Posted by: Online Community Member

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.

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 01:17

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 01:18  | Reason: Not specified

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

User
Posted 18 Dec 2021 at 09:51

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 18:44
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!

User
Posted 18 Dec 2021 at 20:51

 

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.

 

 

 

 

 

 

 

 

 

User
Posted 17 Mar 2022 at 18:22
OK another PSA result today. My data now looks like this:

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

17 March 2022 = 0.27

I was quite expecting it to breach the 0.4 threshold for another scan.

User
Posted 17 Mar 2022 at 18:44

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

Dave

User
Posted 17 Mar 2022 at 19:05

Originally Posted by: Online Community Member

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

Are there any lifestyle factors that will affect the speed of growth?

User
Posted 17 Mar 2022 at 21:30

I don't know. There are probably plenty of things which promote cancer such as smoking, but once you have it I doubt these change its progress.

Humans have been around for thousands of years and so has cancer. If there was an easy cure like, willow bark for headache, or sulphur baths for scabies we would have cured it by now.

Dave

User
Posted 18 Mar 2022 at 08:29

Originally Posted by: Online Community Member

I don't know. There are probably plenty of things which promote cancer such as smoking, but once you have it I doubt these change its progress.

Humans have been around for thousands of years and so has cancer. If there was an easy cure like, willow bark for headache, or sulphur baths for scabies we would have cured it by now.

Ah, I might then take up smoking and drinking. ;)

User
Posted 09 Jun 2022 at 12:05

Okay, hello All

My latest result came back today, so my track record looks like this:

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 2021 = 0.17

10 December 2021 = 0.28

17 March 2022 = 0.27

9 June 2022 = 0.31

If I have calculated it correctly, my PSADT is about 10 months and if progress is linear I will breach the 0.4 threshold in two tests time.

Phsychologically I THINK I am okay with it all. I know that I will have to address the problem at some point, but it doesn’t appear to be racing away and there is plenty of time whilst the sun shines.


Edited to add: I have been too frequent since the RP and am up several times a night. The consultant has suggested Solfenacin 5-10mg daily. Has anyone else tried this?

 

 

Edited by member 09 Jun 2022 at 12:11  | Reason: Not specified

User
Posted 09 Jun 2022 at 12:35
I'm on a combo of tamsulosin (improve flow) and solifinacen (overactive bladder) 5mg, i think it helps, i'm only usually up once per night if i cease drinking at a sensible time.
User
Posted 09 Jun 2022 at 18:49
It seems your doubling time is slowing - to come up from 6 months to 10 months is good.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Sep 2022 at 17:00

 

Hi All

The latest check showed a bit of a jump. Now I am looking at this:

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 2021 = 0.17

10 December 2021 = 0.28

17 March 2022 = 0.27

9 March 2022 = 0.31

06 September 2022 - 0.41

I need to get a PSMA PET scan, but Genesis in Windsor and Oxford are looking at 2 weeks. My consultant is trying to get me one sooner at London Bridge.

Is anyone aware of any other centre that is likely to be quicker? If I am going to have to start SRT I want to do so sooner rather than later.

Thanks for your input chaps.

User
Posted 07 Sep 2022 at 21:33
Your penultimately listed PSA seems to be out of chronological order? I think beating a 2 week wait would be very optimistic as these scans are in demand with limited availability in the UK.
Barry
User
Posted 07 Sep 2022 at 21:49

Originally Posted by: Online Community Member
Your penultimately listed PSA seems to be out of chronological order? I think beating a 2 week wait would be very optimistic as these scans are in demand with limited availability in the UK.

 

That's because I cannot tell the difference between March and June!

Genesis Oxford has called me back saying they have some slots next week, but there are others in the queue that they need to offer them to first.

Both Oxford and Windsor can do me a scan in 14 days.

 

 

 

 

User
Posted 07 Sep 2022 at 23:37

Piers, I had my PSMA PET booked in on the NHS in midlands, we have medical insurance so asked if there was an earlier appointment. I was surprised to be told it would actually put me further back. As others on here my scan was cancelled hours before the appointment and delayed by a further two weeks. 

 

My PSA of 1.6 only detected one tumor in a lymph node. Our hospital will not test below 0.3 and six months ago the lower limit was 0.5. You are only just above 0.3. A slight delay may even be beneficial rather than detrimental, at what point does cancer change from invisible to visible. My SABR treatment started 5 weeks after the scan.

Hope all goes well.

Thanks Chris 

 
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