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Leo Robot spares some nerves

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User
Posted 14 Oct 2021 at 16:00

Originally Posted by: Online Community Member


Thanks very much for that helpful information Andy,

That explains that, so now one more mystery remains to be solved. What might the "tiny focus of moderate uptake in the left pelvic side" actually be?

Perhaps PSA isn't prostate specific either? Perhaps whatever it is that's taking up the PSMA tracer also produces PSA? If so is it malignant or not?

Jim
 



PSA isn't prostate specific - that's why a PSA test is never (or hardly ever) actually zero. As I have posted before, tiny amounts of PSA are produced in other organs, breast milk can contain traceable levels and a woman who has just had an orgasm might have a PSA reading for a short while. Higher than expected PSA can be an indicator of breast cancer.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Oct 2021 at 15:35
There is plenty of evidence that HT prior to SRT is beneficial...
User
Posted 16 Oct 2021 at 01:07

Originally Posted by: Online Community Member
There is plenty of evidence that HT prior to SRT is beneficial...


Not according to JD there isn't. My situation being nothing out of the ordinary visible on a PSMA PET scan. One of my points being that call number 2 yesterday was a bit late in the process to suddenly suggest the idea to me.

If you know of research that supports your suggestion would you mind providing me with a link or two?

Jim


 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 16 Oct 2021 at 15:03
User
Posted 16 Oct 2021 at 20:33
The other way of looking at it is that there is no way to confirm that SRT will be of benefit to you but, having decided to go down that route, why wouldn't you do everything you can to help ensure it is successful?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Oct 2021 at 23:50
Thanks very much Jonathan. I'll take a look, but not until tomorrow.

Lyn - Because every medical intervention has side effects, some worse than others. As was brought home to me once again by my post CABG liver problems.

And given the way "the team" sprang their latest cunning plan on me I reserve the right to change my mind about Plan A!

Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 17 Oct 2021 at 00:44
I'm not saying you are wrong, just providing the counter-question. For context, J started with the HT but gave it up after 6 months so I was very much hoping that it wouldn't make a huge difference to the effectiveness of the SRT. 10 years on, his PSA is still bobbing around 0.1 so it doesn't seem to have made a huge difference 🤷‍♀️
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Oct 2021 at 13:54
I agree with You soulsurfer re medical intervention. I am still troubled by my Dad's PC experience and I wish there was a way to access his notes.

Purely observational and I can find no evidence but In my dad's case and others on here PC seems to have been relatively benign until it it was blasted with RT and HT.

My own father went from clear bone scan to "riddled" in about 12 months after RT and HT. Certainly making me reticent about my own treatment path.

User
Posted 18 Oct 2021 at 01:15

Thanks Jonathan,

I'm now even more "reticent about my own treatment path"!

I haven't had a chance to read your references yet, but I thought I'd bookmark this July 2021 open access review paper I've just stumbled across:


https://www.frontiersin.org/articles/10.3389/fsurg.2021.691473/full

"Radiation Therapy After Radical Prostatectomy: What Has Changed Over Time?"


Jim


 

Edited by member 18 Oct 2021 at 08:56  | Reason: Not specified

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 18 Oct 2021 at 09:00

Good morning Chris,

I just tried it myself, and it gave me a "website under maintenance" message. Maybe it will burst into life again in due course?

I've also just received a call booking me in for a planning CT scan. Over an hours drive away on October 29th. Barring accidents and queues on the "Atlantic Highway".


 


P.S. The link seems to be working again now:

"However, how to select patients at risk of progression who are more likely to benefit from a more aggressive treatment after RP, the exact timing of RT after RP, and the use of hormone therapy and its duration at the time of RT are still open issues."

Jim


 

Edited by member 18 Oct 2021 at 09:45  | Reason: Added P.S.

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 18 Oct 2021 at 10:03

Jim , the link works for me now.


Might be of interest to you, another take on HT with RT.


http://links.mkt1881.com/els/v2/GyZrMdm_9VJb/eW1qSUZ5VjhRZFB0dUhyQzJUVzhSUk5SR25yb2FwNVpUMWVpdWlacVBQc0hNS2tXK2Fpc2hyRm5lTUtXNHh3dFVTNUcvUVFrYnNZRkR0SEpiS3Y5dTJFMStDR1lZNlNWMmRxRTFwdXhTY2s9S0/L2QyalhtSjFwazBqTEtNTkF6bXlWM2FlamlhSGNxRVp3NG5oT2ppSCtYeFNuVWs5dmVPNVpLYzdwbXo3NXpZYlcwcnJTdVJvMU5jbTRreGJTclpuY3c9PQS2


 As previously mentioned I didn't have HT because it was thought it would be too toxic, if you do have HT you can of course always stop it. 


Thanks Chris


 


 


 

User
Posted 18 Oct 2021 at 11:43
Soulsurfer I thing the paper you shared sums it all up nicely and better than the links I shared.

My take on the paper and some of the referenced trials is that guys with your stats (G >7 and T3B) are precisely the ones who would benefit most from ADT + SRT.

In my case (G 6 and focal T3A) the paper suggests ADT is "optional" and should be started at 0.2 which is what the ONCO at the RM said. My local ONCO is pushing for immediate SRT with ADT because I was T3A and have had 2 successive PSA rises as per the current European Urology guidelines.

Your initial PSA stats are interesting, did anyone ever explain why it dropped so dramatically prior to your RP?

User
Posted 19 Oct 2021 at 00:56

I had a nice long chat with my oncology nurse this morning, and it seems I got hold of the wrong end of the stick in my 2nd conversation with JD last week. The plan is definitely to concentrate on my prostate bed. I don't know where that leaves me regarding the "tiny focus of moderate uptake in the left pelvic side". The HT if selected would be for 2 months pre RT and 4 months thereafter.


Chris - Thanks for the link. And I will certainly bear your suggested option in mind!

Jonathan - Thanks again. What with one thing and another I still haven't had a chance to go through the review paper in detail, let alone any of the references. It's high on my TODO list though.

I've not received any suggested explanations for the strange behaviour of my extravagant initial PSA readings. It seems I'm a medical man of mystery! I know that I would have liked to have the op as soon as possible after the positive biopsy result. After that, time was wasted (from my perspective at least) on further scans searching for apparently non existent metastases.

Jim


   

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 30 Oct 2021 at 09:28

I had my pre SRT planning scan yesterday. Fortunately the floods in West Cornwall weren't too bad, and the journey didn't take much longer than usual.

However I spent much longer at Treliske than I was anticipating. Having experienced the joys of a self administered enema setting up the contrast enhanced CT scan seemed to take forever. Although when it eventually happened the scan itself was over in seconds.

Then the team had lots of problems making my tattoos adequately visible. I have been advised to shave the area surrounding the central one before my next appointment, or more time will likely be wasted trying to find it!

It seems the plan is to zap my prostate bed and remaining lymph nodes, hopefully before Xmas.

Jim


 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 30 Oct 2021 at 12:11

At least it’s all done now and you will be glad to press ahead with SRT. When I had SRT I was amazed at how expert they are at finding these tattoo dots!


Hope all goes well.

Ido4

User
Posted 30 Oct 2021 at 12:55
Fingers crossed the photons do their job...
User
Posted 30 Oct 2021 at 13:43

Originally Posted by: Online Community Member


I have been advised to shave the area surrounding the central one before my next appointment, or more time will likely be wasted trying to find it!


No one formally advised me of that but after the third fraction, I realised that if I was a radiographer I would prefer spend less time looking at pubes, so I shaved that area. It's a bit like saying thank you to a bus driver, not strictly necessary, but it is polite.


Hope all goes well.

Dave

User
Posted 17 Nov 2021 at 12:32

I must be getting senile. I thought I'd added a comment here yesterday, but apparently not. First of all, thanks everyone for your good wishes.

Prompted by Pete's SRT thread I called my oncology nurse yesterday to enquire how the "planning" was progressing at her end. She went away to find out and called me back a few minutes later. Apparently the letter was popped in the post on Monday, but it still hasn't popped into our letter box up here in North Cornwall.

My first appointment with Treliske's Siemens LINAC is at 10:30 AM on Monday November 22nd.

2021! Based on Pete's thread it seems investing in a "pee bottle" before then will be a wise investment?

Jim


 

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
User
Posted 17 Nov 2021 at 12:58
Good luck soulsurfer, looking forward to further updates
User
Posted 17 Nov 2021 at 17:50

Thanks Jonathan,

My first update is earlier than originally anticipated! It's just as well that I called the oncology radiographers at Treliske this afternoon to ask what "the plan" entailed.

It seems that it changed after the letter was sent, and my first appointment is now at 11:15 AM on Wednesday 24th. It also seems that my original informant was in possession of somewhat out of date information. My appointment is with one of two "beam matched" Varian TrueBeam LINACs.

Jim

Reality is merely an illusion, albeit a very persistent one - Albert Einstein
 
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