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Biochemical recurrence after RP ADT and EBRT in 2016

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User
Posted 25 Jan 2024 at 08:51

Hi All.

My 53 year old husband has just received the results from his PET scan. He has a sizable tumour in his T6 vertebrae. The consultant said that new radiotherapy treatment is potentially curative and it would start next month if the MDT agree that as a treatment pathway, reserving hormone treatment for later.

His PSA is still only just above 0.2 which seems really low for the size of the tumour. It is a single, Grade 0 spot in the column as  far as I could see on the scan. We have not received the actual results letter yet. He is not experiencing any pain at all thankfully and is fit and well. His Gleason is 9, and the consultant also referred to his staging as 4 now (was T3B N1M0).

The thing is, I had always understood that bone mets ultimately meant that it is now just a case of extending time and preserving QOL, combined with size/pain reduction through various treatments. My husband is unable to discuss anything to do with anything other than this being curative. I know this is the hope and fully understand that he needs this to keep going mentally. It is great that he thinks this is going to be the outcome. He has never read anything about his staging and prognosis. He doesn't want to know. 

The issue I have, is can this actually be curative at this stage? I can continue to be positive for him, but I need to know if it was just the consultant being positive in the moment as it counters everything I have read myself about stage 4 bone mets.

Does this treatment carry a real possibility of cure? 

Positive vibes and best wishes to everyone here. Any help or advice most gratefully received.

Thank you, Rach 

Edited by member 25 Jan 2024 at 10:26  | Reason: Realised I hadn't been positive and caring to others who are reading. Sorry. Just rushing to find an

User
Posted 25 Jan 2024 at 08:51

Hi All.

My 53 year old husband has just received the results from his PET scan. He has a sizable tumour in his T6 vertebrae. The consultant said that new radiotherapy treatment is potentially curative and it would start next month if the MDT agree that as a treatment pathway, reserving hormone treatment for later.

His PSA is still only just above 0.2 which seems really low for the size of the tumour. It is a single, Grade 0 spot in the column as  far as I could see on the scan. We have not received the actual results letter yet. He is not experiencing any pain at all thankfully and is fit and well. His Gleason is 9, and the consultant also referred to his staging as 4 now (was T3B N1M0).

The thing is, I had always understood that bone mets ultimately meant that it is now just a case of extending time and preserving QOL, combined with size/pain reduction through various treatments. My husband is unable to discuss anything to do with anything other than this being curative. I know this is the hope and fully understand that he needs this to keep going mentally. It is great that he thinks this is going to be the outcome. He has never read anything about his staging and prognosis. He doesn't want to know. 

The issue I have, is can this actually be curative at this stage? I can continue to be positive for him, but I need to know if it was just the consultant being positive in the moment as it counters everything I have read myself about stage 4 bone mets.

Does this treatment carry a real possibility of cure? 

Positive vibes and best wishes to everyone here. Any help or advice most gratefully received.

Thank you, Rach 

Edited by member 25 Jan 2024 at 10:26  | Reason: Realised I hadn't been positive and caring to others who are reading. Sorry. Just rushing to find an

User
Posted 25 Jan 2024 at 10:29

Rach, a few years ago following a recurrence after salvage RT, my next option would have been HT for life, not something I was looking forward to.

Following advances in scans and SABR treatment options changed and I have had two psma scans and had two separate lymph nodes treated, one in 2022 and one last year. 

I have no experience of bone mets or bone tumours. I probably have a similar attitude to your husband. CB posted the other day, "you don't want to end up playing whack a mole". I am quite happy to play whack a mole, as long as my insurance company and consultant agree to it .

Thanks Chris 

 

Added, also a fan of Kwon.

 

Edited by member 25 Jan 2024 at 11:14  | Reason: Punctuation

User
Posted 26 Jan 2024 at 14:05
I agree with what has been said but sometimes there are micro mets which can emerge to become a problem even though the current hot spot is dealt with. This could happen in months or years, or not at all, only time will tell. However, it's worth a shot as at least it could delay progression. It's good to be optimistic but can be even more devastating where you thought you were PCa free but subsequently found you were not.
Barry
User
Posted 25 Jan 2024 at 10:29

The thinking on curing recurrence is undergoing a change. Five years ago it would have been a case of managing qol, pain etc. One doctor in the USA had different ideas. Google "Dr kwon oligometastatic prostate cancer " and watch some of his videos.

I was sceptical of his claims, but there is now some evidence that Dr Kwon is correct, that 'some' men will be cured by blasting a small number of mets.

I don't know what the odds of your husband being cured are? They are slim, but not zero.

Dave

User
Posted 25 Jan 2024 at 14:41

This sounds brilliant. I know that this is the boost I need to help keep looking forward and making sure I can stay focused on a cure for my husband. He has been an absolute legend, storming through it all with a single minded focus on winning. I have been bracing myself every time the PSA rises. Thanks to all, for being such a great source of information and courage for me so that I can be a better support for him. 

User
Posted 26 Jan 2024 at 12:45

The Missus, speaking to my oncologist he said SABR treatment to the spine is possible but it can affect the bone.

Thanks Chris 

 

User
Posted 26 Jan 2024 at 13:55

Thanks Chris,

My fella will be meeting with the MDT team next week to discuss treatment options, and I am pretty sure he will be going straight in to zapping it regardless. He had some pretty horrific immediate side effects when he had the EBRT to his pelvic bed in 2016, but nothing long term, so I think he is keen to "reset" again as it were. Get it back down to zero again and keep everything crossed. I think I am going to need to strap myself in for this one! 

Thanks for sharing this information with me Chris,

Rach

User
Posted 26 Jan 2024 at 16:48

Thanks Barry,

I like to keep one foot in the reality, and know this may not be over yet. 

Best wishes,

Rach

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User
Posted 25 Jan 2024 at 10:29

The thinking on curing recurrence is undergoing a change. Five years ago it would have been a case of managing qol, pain etc. One doctor in the USA had different ideas. Google "Dr kwon oligometastatic prostate cancer " and watch some of his videos.

I was sceptical of his claims, but there is now some evidence that Dr Kwon is correct, that 'some' men will be cured by blasting a small number of mets.

I don't know what the odds of your husband being cured are? They are slim, but not zero.

Dave

User
Posted 25 Jan 2024 at 10:29

Rach, a few years ago following a recurrence after salvage RT, my next option would have been HT for life, not something I was looking forward to.

Following advances in scans and SABR treatment options changed and I have had two psma scans and had two separate lymph nodes treated, one in 2022 and one last year. 

I have no experience of bone mets or bone tumours. I probably have a similar attitude to your husband. CB posted the other day, "you don't want to end up playing whack a mole". I am quite happy to play whack a mole, as long as my insurance company and consultant agree to it .

Thanks Chris 

 

Added, also a fan of Kwon.

 

Edited by member 25 Jan 2024 at 11:14  | Reason: Punctuation

User
Posted 25 Jan 2024 at 12:41

That's incredible. Thank you so much for your comment. I will look into this and get properly on board with my husband's positivity.

Best of luck with your ongoing treatment. 

Edited by member 25 Jan 2024 at 14:55  | Reason: Not specified

User
Posted 25 Jan 2024 at 14:41

This sounds brilliant. I know that this is the boost I need to help keep looking forward and making sure I can stay focused on a cure for my husband. He has been an absolute legend, storming through it all with a single minded focus on winning. I have been bracing myself every time the PSA rises. Thanks to all, for being such a great source of information and courage for me so that I can be a better support for him. 

User
Posted 26 Jan 2024 at 12:45

The Missus, speaking to my oncologist he said SABR treatment to the spine is possible but it can affect the bone.

Thanks Chris 

 

User
Posted 26 Jan 2024 at 13:55

Thanks Chris,

My fella will be meeting with the MDT team next week to discuss treatment options, and I am pretty sure he will be going straight in to zapping it regardless. He had some pretty horrific immediate side effects when he had the EBRT to his pelvic bed in 2016, but nothing long term, so I think he is keen to "reset" again as it were. Get it back down to zero again and keep everything crossed. I think I am going to need to strap myself in for this one! 

Thanks for sharing this information with me Chris,

Rach

User
Posted 26 Jan 2024 at 14:05
I agree with what has been said but sometimes there are micro mets which can emerge to become a problem even though the current hot spot is dealt with. This could happen in months or years, or not at all, only time will tell. However, it's worth a shot as at least it could delay progression. It's good to be optimistic but can be even more devastating where you thought you were PCa free but subsequently found you were not.
Barry
User
Posted 26 Jan 2024 at 16:48

Thanks Barry,

I like to keep one foot in the reality, and know this may not be over yet. 

Best wishes,

Rach

 
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