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Radiotherapy after RARP

User
Posted 29 Jul 2024 at 22:05

A rubbish day!

After a nerve sparing prostate removal in Jan 23 and what looked like contained cancer in the prostate on the biopsy it appears that it wasn't all removed and that some naughty cancer cells lingered. For two tests all looked good but then less good news.

0.05, 0.04, 0.098, 0.14, 0.159, 0.192

Latest meeting with Oncologist advised to have salvage Radiotherapy on just the prostate bed.

A few questions if anyone can help

I have been advised either 20 sessions or 32 sessions. What are the advantages of 32 sessions over 20. I was advised lesser side effects. Are they worth the extra 12 sessions?

Any side effects that people have experienced?

Are you allowed to miss the odd session or does it need to be 5 days a week?

Any general advice appreciated?

Hope everyone is coping ok and as ever thanks for your advice and support.

Edited by member 30 Jul 2024 at 08:14  | Reason: typo

User
Posted 30 Jul 2024 at 08:25

1. More details in my bio but 3+4

2. Yes a typo now corrected thanks.

3. Yes never undetectable

4. I think it is 3 consecutive rises above 0.1 or getting to 0.2 but someone more knowledgeable can confirm. It does vary. My oncologist has several clients with stable PSA readings between these figures.

I think you should be very positive about your outcome so far. Your PSA scores are a dream. Try not to worry about the tests and even if there are rises it is still very much a curative route. It is hard but it is only you losing if you spend too much time dwelling on it. I know how easy that is to say but hard to do.

Best of luck.

 

User
Posted 29 Jul 2024 at 22:05

A rubbish day!

After a nerve sparing prostate removal in Jan 23 and what looked like contained cancer in the prostate on the biopsy it appears that it wasn't all removed and that some naughty cancer cells lingered. For two tests all looked good but then less good news.

0.05, 0.04, 0.098, 0.14, 0.159, 0.192

Latest meeting with Oncologist advised to have salvage Radiotherapy on just the prostate bed.

A few questions if anyone can help

I have been advised either 20 sessions or 32 sessions. What are the advantages of 32 sessions over 20. I was advised lesser side effects. Are they worth the extra 12 sessions?

Any side effects that people have experienced?

Are you allowed to miss the odd session or does it need to be 5 days a week?

Any general advice appreciated?

Hope everyone is coping ok and as ever thanks for your advice and support.

Edited by member 30 Jul 2024 at 08:14  | Reason: typo

User
Posted 30 Jul 2024 at 00:36
I had 20 Sessions of RT alongside HT , yes you can miss a session , one of mine was cancelled due to machine breakdown and added on at the end .

Also don't tend to offer RT on weekends or Bank Holidays.

User
Posted 30 Jul 2024 at 07:34

Originally Posted by: Online Community Member

0.05, 0.04, 0.98, 0.14, 0.159, 0.192

Hello mate.

I had my op in Feb 2023, so are time scales are very similar. Do you mind telling me what your Gleason score and cancer staging pre op were? I was Gleason 9 (4+5) and T3a.

Is your third reading 0.98 a typo and should be 0.098?

I can't see any < in front of any of the figures. Was your PSA therefore never deemed undetectable.

At my hospital lab thet only measure as low as 0.02 all my PSA readings have thus far been <0.02

It appears that you have had six consecutive rises. I always thought salvage RT was consider at 0.20 or on three consecutive rises?

I'm having my 18 months pre op PSA test today. 

I'm sorry if I sound pedantic, but we are in very similar positions.  Others on here, may use our details to make comparisons regarding the success of RARP and the chances of recurrence. 

I totally feel your disappointment. I dread my tests, in case they show the cancer is back somewhere.

I'm sorry that you have had to have another treatment plan, and wish you every success with it.

Good luck mate

 

 

 

Edited by member 30 Jul 2024 at 09:42  | Reason: Additional text

User
Posted 30 Jul 2024 at 08:24

I had 66gys over 33 sessions, I believe the 20 sessions gives a similar but not exactly the same amount of radiation in less sessions. The decision to have salvage RT before or after the 0.2 will depend on your circumstances. It took nearly three years for me to hit the 0.2 threshold. By the time all the planning was done I have reached 0.27, at the time I remember being told they would be criticised for not starting SRT before 0.3, that,I think has now all changed. I had my SRT over the Easter period that included other bank holidays so from start to finish was quite a long period, I had nothing on good Friday but I had one on the Saturday. There are supposedly less side effects with the 20 sessions . I didn't have HT with my RT because of a stricture, perhaps in hindsight it would have been worth the risk, I have needed further SABR treatment since the SRT. 

SRT did some rare damage to my bladder but in my day you were not  constantly scanned as some of the modern machines do.

My profile doesn't make pretty reading but heading for nearly 11 years since diagnosis and still dodging life time on HT .

Thanks Chris 

User
Posted 30 Jul 2024 at 09:40

Originally Posted by: Online Community Member

I think you should be very positive about your outcome so far. Your PSA scores are a dream. Try not to worry about the tests and even if there are rises it is still very much a curative route.

Hi again,

Sorry I should have checked your bio which is much more detailed. However, thank you for your response, it's been very helpful. 

As I've been having them for over 13 years, I should have managed PSA test anxiety by now, but I haven't. I do fully appreciate how fortunate I am, that up to now, my PSA levels following RARP have been undetectable. However, I've been warned numerous times that because of my high Gleason and EPE, that there was a 70% chance of recurrence. It's much harder to focus on being positive when you're repeatedly told, even after good results, that statistically the odds are still against you. 

I also understand that even if I get recurrence, its curative. However hospital visits of any kind, have always stressed me.  The thought of 20-35 visits for RT would be a serious psychological issue, and it's one of the main reasons I opted for surgery. In fact, when at first it appeared that I was unsuitable for surgery, the consultant could see how anxious the thought of 35 RT visits made me. He was so concerned, that he contacted an RT consultant to see if it could be reduced to five visits. The lowest he was prepared to chance was 20 visits. 

I'd probably have to enter into another Dutch auction if I ever need salvage RT. 😬

Anyway fingers crossed.

Once again many thanks.

 

Edited by member 30 Jul 2024 at 10:09  | Reason: Typo

User
Posted 30 Jul 2024 at 17:15

Originally Posted by: Online Community Member

I have been advised either 20 sessions or 32 sessions. What are the advantages of 32 sessions over 20. I was advised lesser side effects. Are they worth the extra 12 sessions?

The 32 (+- a couple) x 2Gy was the traditional salvage radiotherapy dose.
20 (at 3Gy I think) is the hypofractionated version.
There have been some suggestions the hypofractionated versions might generate more side effects, but I haven't seen any data on this.

Originally Posted by: Online Community Member

Are you allowed to miss the odd session or does it need to be 5 days a week?

If you miss one, they'll add it on the end or do it at a weekend if they're there at weekends. It can happen if a machine breaks down, or there's a major road snarl-up, etc. or bank holidays at some centres. The dosing is based on the duration start to end, and if this duration gets significantly longer than was originally planned, the treatment effect of the doses would be diminished. This is considered sufficiently important that they didn't stop treatment in the case of patient having got COVID. (For some cancers, each missed radiotherapy session requires two to be added, but that's not done with prostate cancer.)

Edited by member 30 Jul 2024 at 17:17  | Reason: Not specified

User
Posted 01 Aug 2024 at 10:46
I was pretty much in your situation and recently completed my SRT course - there is a thread somewhere of my day to day diary.

The only thing I would say is that with the lower dose I have a couple of radiation burns on my bum - not painful and of no interested to the onco - but I wonder if shorter duration / higher dose might make this more of an issue?

Has anyone else experienced this? I haven't seen it talked about so am assuming not.

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User
Posted 30 Jul 2024 at 00:36
I had 20 Sessions of RT alongside HT , yes you can miss a session , one of mine was cancelled due to machine breakdown and added on at the end .

Also don't tend to offer RT on weekends or Bank Holidays.

User
Posted 30 Jul 2024 at 07:34

Originally Posted by: Online Community Member

0.05, 0.04, 0.98, 0.14, 0.159, 0.192

Hello mate.

I had my op in Feb 2023, so are time scales are very similar. Do you mind telling me what your Gleason score and cancer staging pre op were? I was Gleason 9 (4+5) and T3a.

Is your third reading 0.98 a typo and should be 0.098?

I can't see any < in front of any of the figures. Was your PSA therefore never deemed undetectable.

At my hospital lab thet only measure as low as 0.02 all my PSA readings have thus far been <0.02

It appears that you have had six consecutive rises. I always thought salvage RT was consider at 0.20 or on three consecutive rises?

I'm having my 18 months pre op PSA test today. 

I'm sorry if I sound pedantic, but we are in very similar positions.  Others on here, may use our details to make comparisons regarding the success of RARP and the chances of recurrence. 

I totally feel your disappointment. I dread my tests, in case they show the cancer is back somewhere.

I'm sorry that you have had to have another treatment plan, and wish you every success with it.

Good luck mate

 

 

 

Edited by member 30 Jul 2024 at 09:42  | Reason: Additional text

User
Posted 30 Jul 2024 at 08:24

I had 66gys over 33 sessions, I believe the 20 sessions gives a similar but not exactly the same amount of radiation in less sessions. The decision to have salvage RT before or after the 0.2 will depend on your circumstances. It took nearly three years for me to hit the 0.2 threshold. By the time all the planning was done I have reached 0.27, at the time I remember being told they would be criticised for not starting SRT before 0.3, that,I think has now all changed. I had my SRT over the Easter period that included other bank holidays so from start to finish was quite a long period, I had nothing on good Friday but I had one on the Saturday. There are supposedly less side effects with the 20 sessions . I didn't have HT with my RT because of a stricture, perhaps in hindsight it would have been worth the risk, I have needed further SABR treatment since the SRT. 

SRT did some rare damage to my bladder but in my day you were not  constantly scanned as some of the modern machines do.

My profile doesn't make pretty reading but heading for nearly 11 years since diagnosis and still dodging life time on HT .

Thanks Chris 

User
Posted 30 Jul 2024 at 08:25

1. More details in my bio but 3+4

2. Yes a typo now corrected thanks.

3. Yes never undetectable

4. I think it is 3 consecutive rises above 0.1 or getting to 0.2 but someone more knowledgeable can confirm. It does vary. My oncologist has several clients with stable PSA readings between these figures.

I think you should be very positive about your outcome so far. Your PSA scores are a dream. Try not to worry about the tests and even if there are rises it is still very much a curative route. It is hard but it is only you losing if you spend too much time dwelling on it. I know how easy that is to say but hard to do.

Best of luck.

 

User
Posted 30 Jul 2024 at 09:40

Originally Posted by: Online Community Member

I think you should be very positive about your outcome so far. Your PSA scores are a dream. Try not to worry about the tests and even if there are rises it is still very much a curative route.

Hi again,

Sorry I should have checked your bio which is much more detailed. However, thank you for your response, it's been very helpful. 

As I've been having them for over 13 years, I should have managed PSA test anxiety by now, but I haven't. I do fully appreciate how fortunate I am, that up to now, my PSA levels following RARP have been undetectable. However, I've been warned numerous times that because of my high Gleason and EPE, that there was a 70% chance of recurrence. It's much harder to focus on being positive when you're repeatedly told, even after good results, that statistically the odds are still against you. 

I also understand that even if I get recurrence, its curative. However hospital visits of any kind, have always stressed me.  The thought of 20-35 visits for RT would be a serious psychological issue, and it's one of the main reasons I opted for surgery. In fact, when at first it appeared that I was unsuitable for surgery, the consultant could see how anxious the thought of 35 RT visits made me. He was so concerned, that he contacted an RT consultant to see if it could be reduced to five visits. The lowest he was prepared to chance was 20 visits. 

I'd probably have to enter into another Dutch auction if I ever need salvage RT. 😬

Anyway fingers crossed.

Once again many thanks.

 

Edited by member 30 Jul 2024 at 10:09  | Reason: Typo

User
Posted 30 Jul 2024 at 11:30

Originally Posted by: Online Community Member

 I didn't have HT with my RT because of a stricture

Thanks Chris 

Hi Chris

Have you any idea why or how HT with RT would affect a stricture?

Cheers

Bill

User
Posted 30 Jul 2024 at 14:04

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

 I didn't have HT with my RT because of a stricture

Thanks Chris 

Hi Chris

Have you any idea why or how HT with RT would affect a stricture?

Cheers

Bill

Hi Bill, at the time of needing SRT I had already been back into hospital on a dozen times to have the stricture dilated or an incision into the scar tissue. It was after the SRT and the PSA was rising, I asked why I hadn't had HT with the SRT, the oncologist replied we,( presumably him and the urologist) thought the combination of RT and HT would be to toxic for the stricture. I don't know how the mechanics of the combination work, but most men do have RT and HT together.

Thanks Chris 

 

User
Posted 30 Jul 2024 at 17:15

Originally Posted by: Online Community Member

I have been advised either 20 sessions or 32 sessions. What are the advantages of 32 sessions over 20. I was advised lesser side effects. Are they worth the extra 12 sessions?

The 32 (+- a couple) x 2Gy was the traditional salvage radiotherapy dose.
20 (at 3Gy I think) is the hypofractionated version.
There have been some suggestions the hypofractionated versions might generate more side effects, but I haven't seen any data on this.

Originally Posted by: Online Community Member

Are you allowed to miss the odd session or does it need to be 5 days a week?

If you miss one, they'll add it on the end or do it at a weekend if they're there at weekends. It can happen if a machine breaks down, or there's a major road snarl-up, etc. or bank holidays at some centres. The dosing is based on the duration start to end, and if this duration gets significantly longer than was originally planned, the treatment effect of the doses would be diminished. This is considered sufficiently important that they didn't stop treatment in the case of patient having got COVID. (For some cancers, each missed radiotherapy session requires two to be added, but that's not done with prostate cancer.)

Edited by member 30 Jul 2024 at 17:17  | Reason: Not specified

User
Posted 01 Aug 2024 at 10:46
I was pretty much in your situation and recently completed my SRT course - there is a thread somewhere of my day to day diary.

The only thing I would say is that with the lower dose I have a couple of radiation burns on my bum - not painful and of no interested to the onco - but I wonder if shorter duration / higher dose might make this more of an issue?

Has anyone else experienced this? I haven't seen it talked about so am assuming not.

 
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