The CHHIP trial indicated that fewer fractions at higher dose had fewer side effects for most men.
20 fractions at 3Gy is standard in some areas but not all yet, more's the pity - we still see men on here being told they will be getting 37 sessions.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Andy - Many thanks for the info, and the comprehensive profile. It sounds as though you're a professional in the PCa arena?
My PSA was 131 when tested for the first time. Try as they might no scan since has revealed any problem anywhere except my prostate before it was (almost!) all removed.
Lyn - Thanks again. An acronym I haven't come across before, so I'll go away and look it up. When I asked the onco from Treliske where I should look when doing my due diligence he suggested:
1) The Prostate Cancer UK web site! He didn't sound keen to take a look at my personal story though.
2) The RADICALS trial findings
Jim
Edited by member 28 Sep 2021 at 11:05
| Reason: Not specified
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
RADICALS makes interesting reading but was focused on the benefits / risks of adjuvant RT over salvage RT - John's onco is one of the authors here
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)31553-1/fulltext#:~:text=RADICALS%20is%20an%20international%2C%20phase%203%2C%20multicentre%2C%20open-label%2C,centres%20in%20Canada%2C%20Denmark%2C%20Ireland%2C%20and%20the%20UK.
CHHiP looked specifically at standard RT (74 fractions) v hyperfractionated RT (19 or 20 fractions) - John's onco was also involved in this trial which is how J got his 20 sessions although at a higher dose that CHHiP was using at the time.
https://www.icr.ac.uk/our-research/centres-and-collaborations/centres-at-the-icr/clinical-trials-and-statistics-unit/clinical-trials/chhip
Edited by moderator 06 Jul 2023 at 13:17
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks again for that info Lyn,
I asked my previous consultant for a printout of my most recent F18 PSMA PET CT scan results and a suite of DVDs. By the sound of it she had other things on her mind at the time, but the printout finally arrived in my letter box today. The highlights read as follows:
"Physiological uptake is seen within the salivary gland...
No convincing focal lesion or uptake is seen within the prostatic bed. There is a tiny focus of moderate uptake in the left pelvic side. This does not readily correlate to any anatomical structure and is nonspecific.. No further area of increased uptake is seen. No abdominal or pelvic nodes are measurable...
IMPRESSION - No definitive evidence is seen for localisation for relapsed disease. Nonspecific uptake in the left pelvic sidewall. An interval study may be of benefit in further assessing."
Can anyone with more experience in these matters than yours truly translate that into plain English for me?
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Just says that there are no areas looking suspicious for spread - prostate bed and lymph nodes look clear, there is an area that is lit up in your pelvis but it isn’t bone or lymph and isn’t attached to anything like your bowel so unlikely to be mets. Their suggestion is that if the scan is repeated at some point in the future, that may provide more answers.
Salivary gland comment is odd - perhaps you had a bit of infection / inflammation at the time?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I had another PSA test yesterday. Up to 0.35 this time.
I'm expecting another call tomorrow from a (probably junior) member of my oncology team. No doubt zapping my prostate bed will be highly recommended.
It seems as though the time has come for some further action to be taken. I wish I felt more confident that they'll be zapping the alleged microscopic cancer rather than some other bit of me that is currently undamaged and still useful!
Jim
Edited by member 13 Oct 2021 at 23:41
| Reason: Not specified
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
PSMA is often present in salivary glands. It's unfortunate it was called *PROSTATE SPECIFIC* because it's not. This is a significant factor with Lutetium 177 treatment, which hence also impacts salivary glands.
User
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
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
An "interesting" sequence of conversations with the junior doctor this morning.
I didn't realise, but it seems that the "hotspot" in my left pelvic side will get zapped as a matter of course. I was envisaging the prostate bed and remaining lymph nodes, but apparently pretty much the whole pelvic region gets treated.
I signed up for a "planning CT scan" in a week or two followed by 20 fractions over a 4 week period starting perhaps 3 weeks after the scan.
A few minutes later the phone rang again. I paraphrase only slightly:
JD - "I've just had a word with your new consultant [He who must not be named?], and he would like to start you on hormone therapy for a couple of months before starting SRT"
Jim - "What evidence is there that hormone therapy would benefit somebody in my position"
JD - "There isn't any"
Currently we're back on Plan A as agreed 10 minutes previously, whilst I do yet more due diligence.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
Originally Posted by: Online Community MemberThanks 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
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There is plenty of evidence that HT prior to SRT is beneficial...
User
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 |
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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
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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
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
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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
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
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
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Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
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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
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
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 |
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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.
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Fingers crossed the photons do their job...
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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.
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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 |
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Good luck soulsurfer, looking forward to further updates
User
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 |
User
It seems that normal practice is to reveal future appointments at the first RT session.
After making further enquiries I have now received a copy of my forthcoming 4 week timetable via email. I'm still not entirely sure which parts of my anatomy "the plan" will be targeting. Prostate bed, lymph nodes and where my missing lymph nodes used to be seem to be on the list.
However thus far there has been no mention of the mysterious "nonspecific uptake in the left pelvic sidewall" spotted by my most recent PSMA scan.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
They call it informed consent for a reason, make sure they inform you before you consent to it!!
Seriously, you have reasonable questions that need an answer..
User
Yes, they gave me a list of appointments for the first week. At the first RT session the bloke at the desk said forget that list and then asked me if I prefer mornings or afternoons and drew up another list for that week. Each day they added the appointment for the same day the next week. They were fairly good at keeping to their times. I guess they have to try and keep the machines in use all the time, and as patients die, or new ones arrive the capacity changes at short notice.
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Thanks Jonathan,
Your comment has finally decided me to call Treliske on Monday morning to inform them that they suddenly have some spare slots on the calendar of one of their TrueBeams.
Thankfully not for the first of Dave's suggested reasons!
Jim
P.S. Or perhaps the LINACs work weekends? I was told my body would need regular 2 day respites to recover before the next batch of 5 doses.
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Effectively I suspect. Just in case somebody was working there this morning I sent an email to the address I received my SRT timetable from, referencing this thread. Plus:
"After giving the matter much thought I'd like to give the RCHT as much notice as possible that I won't be attending my revised first SRT appointment on Wednesday.
Certainly not without a frank discussion with Dr. B of the sort I had face to face with Dr. A many moons ago."
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
I also called the Treliske oncology radiographers first thing this morning.
I now have an appointment for a face to face meeting with Dr. B in Truro, first thing on Thursday morning.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
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User
A result certainly! However it currently seems as though I'm unlikely to receive answers to my written questions before first thing on Thursday morning:
In advance of my meeting with Dr. B I would be most grateful if somebody could answer the question that I put to JD quite some time ago. "Can you direct me to any recent research papers and/or trial results addressing the pros and cons of HT and/or SRT for somebody in my peculiar position?"
PSA >130 pre op but <0.03 post op. PSA currently 0.35 but nothing "significant" visible on a recent PSMA scan.
I also have a supplementary question. Why was the repeat PSMA scan suggested by Dr. C on May 23rd 2021 and subsequently ordered by Dr. A cancelled when I referred the matter back to the oncology department?
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
An interesting research price that discusses SRT timing and risks is here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6935690/
User
Thanks again Jonathan:
The development of advanced imaging techniques such Ga-PSMA positron emission tomography/computed tomography, which are capable of localizing the recurrent lesion when prostate-specific antigen ≤ 0.5 ng/mL, has forced clinicians to reconsider whether patients should undergo radiotherapy without locate first the recurrence.
Slightly Spanish English, but I at least take the point.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
The Gods move in mysterious ways. I'm back from Truro having had a long conversation with Dr. B. Amongst other things I've discovered that Dr. B has a very nice "bedside manner", much like Dr. A.
A more detailed report from me later, when (if?) I have a spare few minutes. Unexpected political developments earlier this week mean that I've moved from being semi-retired to working double time. Hence undergoing any sort of HT or SRT just at the moment would be most inconvenient work wise.
The current plan is therefore to have a video consultation with Dr. B after my next 3 monthly PSA test, which will be in the New Year.
Jim
Edited by member 25 Nov 2021 at 14:42
| Reason: Not specified
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
I don't know how the confusion arose. Perhaps my prior discussions with Dr. A never made it into the notes?
She told me that once my PSA reading rose to 0.2 serious thought should be given to what action to take next given my preference not to "throw everything at the cancer". If and when it rose to 0.3, without any evidence of spread elsewhere, that action should be SRT to the prostate bed. For a long time I assumed that's what my "plan" must consist of even when informed to the contrary by others apart from my new consultant. I was sadly mistaken! However Dr. B agrees that is an entirely reasonable plan in all the circumstances.
Hopefully we're all now on the same page in this regard. With the possible exception of the mysterious "tiny focus of moderate uptake in the left pelvic side that does not readily correlate to any anatomical structure" on my most recent scan.
According to Dr. B if I wanted to avoid any short to medium term side effects one option would be not doing anything at all until my PSA reached 10-15. Starting (possibly intermittent) hormone therapy at that juncture would give me a life expectancy of 13 years "on average, but with a wide range".
I think I'll stick with Plan A, for the moment at least!
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
So now you are 0.35 you are having SRT?? And including the dodgy bit??
User
Some more research that shows real benefit to treating dodgy bits!
https://www.practiceupdate.com/C/126908/56?elsca1=emc_enews_topic-alert
User
Thanks again Jonathan,
Apparently the "dodgy bit" in my left pelvic sidewall would have been treated as a matter of course had I stuck with the "gold standard" of irradiating the majority of my pelvic region, even though it doesn't appear to be associated with a lymph node for example.
If and how it might be treated in conjunction with my prostate bed remains to be discussed in detail. Perhaps the additional scan booked by Dr. A might help, if I can get it reinstated? It might even find something that does correlate with a known part of my anatomy?!
FYI Dr. B directed my attention towards the SPPORT trial:
https://clinicaltrials.gov/ct2/show/NCT00567580
Jim
Edited by member 29 Nov 2021 at 13:47
| Reason: Not specified
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
I'm currently in the midst of what is predicted to be a multi-day post Storm Eunice power cut.
Which indirectly reminded me to post my latest progress report. My online video call with my new consultant turned out to be with the oncology nurse instead. It was nice to see her face for the first time!
My PSA is down to 0.21, so back to watching and waiting for another 3 months.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
So no SRT yet? Is that your choice or the docs recommendation?
User
1) No SRT as yet.
2) A bit of both I suppose. At our face to face meeting I pointed out to my new(ish) consultant that I was not of a mind to simply "throw everything at it".
That being the case, and with a significant PSA reduction, the most recent clinical decision seems self evident?
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |
User
My latest PSA test came in at 0.35 ug/L, equal to last October's peak.
My oncology nurse called to say that the plan remains to continue testing every three months. If there's two consecutive increases another scan will be the order of the day.
Jim
Reality is merely an illusion, albeit a very persistent one - Albert Einstein |