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So.....Salvage Radiotherapy

User
Posted 24 Nov 2023 at 15:50

I really hoped I would never have to come here again after OH had a radical prostatecomy last August - all went really well with recovery from side effects and with first 6 month PSA test at less than 0.025. However second one came back at 0.051 and he has been referred to radiology.  This seems a bit quick but he did have a base positive margin in one place so they seem to be taking it seriously immediately.

This may seem a silly question but is salvage radiotherapy the same as initial radiotherapy or are there any differences - I can't seem to find any details on line.

 

"Time is like a drug. Too much of it kills you." - Terry Pratchett

User
Posted 24 Nov 2023 at 21:41

Hi,

I had 20 fractions of SRT without HT back in July 2022. My latest PSA now stands at <0.01 so a good result for me. 

Like your OH, I had a positive margin post op. PSA started rising after 18 months, I was referred to radiology before reaching 0.2 and without a scan. 

I found the RT pretty straightforward.. 20 sessions spread over four weeks with weekends off.

Good luck. 

Kev.

 

Edited by member 24 Nov 2023 at 21:49  | Reason: Typo

User
Posted 13 Jan 2024 at 09:58

They didn't really give one - they were very much "this is what we are going to do". They were very positive about it. We didn't ask for alternatives because I think it was fairly evident it would have been the hormone treatment which OH wants to avoid as long as possible. It was a bit of a shaker as we had been hoping for no spread and then standard salvage RT.

OH is looking at it as a positive as there is no HT involved yet and it is still a possible "cure" or at least remission which is as good as in our view. I hope yours works out colwick

Yes Lyn the initial shock was tempered by the "but we can do something about it and we know where it is" response. Cyberknife sounds pretty cool anyway. I'm visioning a legolas type figure in miniature running around his pelvis smiting all the goblin like cells.

 

Edited by member 13 Jan 2024 at 19:22  | Reason: typo

"Time is like a drug. Too much of it kills you." - Terry Pratchett

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User
Posted 24 Nov 2023 at 16:48

Welcome back! No, sorry you are here sounds more appropriate.

Short answer to your question; SRT is the same as RT. Slightly longer answer is that it depend.

A slowly rising PSA from a low value post RP suggests a small number of cells in the prostate bed. Ideally you will get some scans done, but at low PSA levels they may not show anything, and you may decide to just shoot blind, or wait until the scan shows a definite target. The oncologist is the best person to make that decision.

Usually RT is 37 fractions, but this has been reduced lately. As most of the cancer has been removed, it may be only a small number of fractions for you OH, as few as five. HT is usually two years, but with SRT it may not be required at all or could be just 6 months.

So the long answer is SRT is more or less the same as RT, but will probably be a little less intense.

Getting booked in for some scans is hopefully the next move.

Dave

User
Posted 24 Nov 2023 at 17:54
Thanks that's a really useful reply. It is worth sorting out some questions to raise as it looks as if it may be something OH can help make the decision on.

"Time is like a drug. Too much of it kills you." - Terry Pratchett

User
Posted 24 Nov 2023 at 17:58

J, I had salvage RT in 2017 , three years after surgery. I had 66 gys over 33 sessions, mine took just over seven weeks due to a glut of bank holiday. I didn't have HT with my SRT.

There is some information on this site,if you can find it.

Thanks Chris 

 

Edited by member 24 Nov 2023 at 18:00  | Reason: Spelling

User
Posted 24 Nov 2023 at 21:00
Jocasta, my SRT consisted of 20 doses. There is recent talk of 5 doses (each rather larger) being effective in trials but I don't know whether that is ready to be rolled out routinely yet.

My guess is that there is some additional risk in your husband's case, the usual threshold for SRT is PSA rise to 0.2. However I believe there has also been some trial evidence that RT given early can be effective without needing HT, and if that is what is in mind it would really be a bonus.

User
Posted 24 Nov 2023 at 21:41

Hi,

I had 20 fractions of SRT without HT back in July 2022. My latest PSA now stands at <0.01 so a good result for me. 

Like your OH, I had a positive margin post op. PSA started rising after 18 months, I was referred to radiology before reaching 0.2 and without a scan. 

I found the RT pretty straightforward.. 20 sessions spread over four weeks with weekends off.

Good luck. 

Kev.

 

Edited by member 24 Nov 2023 at 21:49  | Reason: Typo

User
Posted 24 Nov 2023 at 22:05

Evening all,

I had a prostatectomy nine months ago and was told that 0.2 was the significant figure to possibly trigger further treatment?

My post op PSA results have been 0.02, 0.05, and back to 0.02. All have been classed as undetectable.

Adrian

Edited by member 24 Nov 2023 at 22:09  | Reason: Addition

User
Posted 25 Nov 2023 at 20:41

Are they the only psa tests he's had?.  I had one at 7 weeks and then 3 monthly for a year.  The psa trend gives interesting information.  If it was <0.025 it would be better than 0.025 for example.  Although many hospitals don't measure below 0.1 so 0.025 is still a decent result.  To be referred at 0.05.is way ahead of those at a 0.1 hospital. I'd regard it as good care and it will be interesting to know if they offer RT without a scan, as it's unlikely to find such a small lesion. Some regard early RT as taking a chance while others would say it's a chance worth taking.  If it rises early they tend to take faster action. Good luck Peter

User
Posted 27 Nov 2023 at 12:10

They are Peter. They didn't call for one at 3 months (in error) and in fact we had to contact them to get it done which is why it was nearly six months. They then said the next one could be 6 months as well.  I think they are being extra careful because of the positon of the margin and the fact he had a 4+5 gleason score and a lot of tumour all over in the biopsy. Copy of a letter to radiology turned up on Friday asking for an urgent referral so they are definitely pulling out the stops 

Edited by member 27 Nov 2023 at 12:11  | Reason: Not specified

"Time is like a drug. Too much of it kills you." - Terry Pratchett

User
Posted 11 Dec 2023 at 21:18

So a further PSA test done 2 months after the 0.051 one showed 0.07 so it is definitely rising and not just a blip.  He's now getting a PSMA-Pet scan which they have plenty of capacity for so should be soon. After that there's an appointment with the Consultant on 29th December and  then probably 20 sessions of RT and hormones depending on the results of the PSMA-Pet scan. I caught the fact they think there is a between 10 and 20% chance of mets,(presumably due to the fact that it is only just over a year since the op) something which the OH does not seemed to have picked up - I have noticed he only hears the good stuff - I only hear the bad. I haven't bothered him with it - he heard the "we're still looking to cure this" which is the good news. 

"Time is like a drug. Too much of it kills you." - Terry Pratchett

User
Posted 11 Dec 2023 at 22:22

Originally Posted by: Online Community Member
I have noticed he only hears the good stuff

 

John has always been like this - even when news was bad, he always seemed to be able to erase it from his memory and forget it had ever been said! Drove me round the twist in the first few years after diagnosis but now I realise that, as a coping mechanism, it has served him well!!!! 

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

User
Posted 11 Dec 2023 at 23:13

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
I have noticed he only hears the good stuff

John has always been like this - even when news was bad, he always seemed to be able to erase it from his memory and forget it had ever been said! 

This disease will definitely show whether you're an optimistist or pessimist.  Whether you're happy to be alive or dread dying. 

 

Edited by member 11 Dec 2023 at 23:19  | Reason: Not specified

User
Posted 12 Dec 2023 at 00:44
I agree with that to a point but, while I am an optimist with regard to my own longevity (evidence - I smoke), I dread losing him :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Dec 2023 at 07:12
Perhaps smoking is your coping mechanism to ensure you go first Lyn? Or more likely you are just addicted to nicotine!
User
Posted 12 Dec 2023 at 07:44
Just a straightforward addiction francij - it's a very stressful job!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Dec 2023 at 07:45
Fingers crossed you have the genetics to cope with it. But you really should give it up!
User
Posted 12 Jan 2024 at 13:21

So not good news. As I was half expecting there is spread. However it is one spot in the pelvic bone and they are saying they want to do cyberknife on it in the hope of zapping it. Dr was optimistic but then they always seem to be. There doesn't seem to be a lot of info on cyberknife for mets. Anyone here had it? It sounds like a no brainer to try but can't see it is standard treatment.

"Time is like a drug. Too much of it kills you." - Terry Pratchett

User
Posted 12 Jan 2024 at 13:23

And in an extreme show of being able to push things out of mind OH had genuinely forgotten about the appointment today for the results of the scan.

"Time is like a drug. Too much of it kills you." - Terry Pratchett

User
Posted 13 Jan 2024 at 01:41
If it was my man, I would snap their hand off - you have been given the possibility of curative treatment where many men would be told to just accept they are incurable and sent off with lifelong HT. Cyberknife is an established treatment; it sounds fancy but is really just very, very carefully targeted radiotherapy. You have nothing to lose!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Jan 2024 at 07:40

Jocasta,if I go back a couple of years, my treatment plan was to wait until the PSA got to something between 2 and 10 then go onto HT, probably for life. Attitudes to treatments are changing. Following a PSMA scan I was given SABR treatment to a single lymph node tumor, a few months later another PSMA scan found a second tumor in a different lymph node and I had more SABR treatment along with some bicalutamide. I will know how successful it has been in a couple of weeks. 

I will keep on having curable intent treatment as long as it is in offer. What is your alternative option ?

Thanks Chris 

User
Posted 13 Jan 2024 at 09:58

They didn't really give one - they were very much "this is what we are going to do". They were very positive about it. We didn't ask for alternatives because I think it was fairly evident it would have been the hormone treatment which OH wants to avoid as long as possible. It was a bit of a shaker as we had been hoping for no spread and then standard salvage RT.

OH is looking at it as a positive as there is no HT involved yet and it is still a possible "cure" or at least remission which is as good as in our view. I hope yours works out colwick

Yes Lyn the initial shock was tempered by the "but we can do something about it and we know where it is" response. Cyberknife sounds pretty cool anyway. I'm visioning a legolas type figure in miniature running around his pelvis smiting all the goblin like cells.

 

Edited by member 13 Jan 2024 at 19:22  | Reason: typo

"Time is like a drug. Too much of it kills you." - Terry Pratchett

User
Posted 16 Mar 2024 at 07:47

So Colwick how was your treatment? OH is in the middle of SABR and finding it really easy. Has had 2 sessions and one to go. So far no side effects and the steroids they have given him (presumably for a bit of a boost) means he is doing jobs that have been hanging around for ages as he is feeling so fit!

"Time is like a drug. Too much of it kills you." - Terry Pratchett

User
Posted 16 Mar 2024 at 09:45

Jo, I had two separate courses of SABR first course in August 2022 and another course in may 2023. No side effects from the SABR, both were 5 sessions to two separate lymph nodes. The PSA did shoot up after the first course and a second scan lit up the second lymph node. The last PSA was around 0.42 and the plan is for another PSA in May, if the PSA is 1 or the doubling time Les than three months then I have another PSMA scan. 

They did have to rewrite the treatment program part way through treatment and I was on and off the table a few times.

Bicalutamide with the SABR last year was tolerable and apart from some very slight breast tissue everything is back to normal.

This was posted yesterday and describes the treatment for oligometastatic prostate cancer.

My profile lists tests and treatments over the last ten years. Hope all goes well for you two.

https://m.youtube.com/watch?v=ktMYPcO29WU

 

Thanks Chris 

Edited by member 16 Mar 2024 at 09:45  | Reason: Forgot link

 
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