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Which are considered best neutral prostate oncologists in the world?

User
Posted 21 Jul 2021 at 06:38

Looking for a high standing prostate oncologist for a neutral, unbiased opinion on best treatment strategy for my case. Tried to get, but its seems they are full right now.

What other names can you suggest for a neutral consultation (not pushing radiation or surgery)?

Edited by moderator 21 Jul 2021 at 19:48  | Reason: Not specified

________________________

59M, Gleason 4+3, PSA7.8, T2C.

DaVinci Surgery or HDR Brachytherapy+EBRT or Cyberknife(SBRT)?

User
Posted 21 Jul 2021 at 18:58

Unfortunately, this is a question that really can't be answered here. It is forbidden to name medical staff on this forum. You agreed to that when you signed up!

Best wishes,

Chris

Edited by member 21 Jul 2021 at 19:17  | Reason: Not specified

User
Posted 21 Jul 2021 at 18:22

I think a coin with heads on one side and tails on the other is as good as you can get.

There is no certainty with this disease, no matter how hard you look. 

Dave

User
Posted 21 Jul 2021 at 22:28
An oncologist won't be neutral - they deal with radiotherapy, brachytherapy, chemo, hormone treatment, etc. A urologist deals with surgery. You will struggle to find someone expert in both - that's why a man's diagnostics are discussed by a multi-disciplinary team before treatment choices are offered.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Jul 2021 at 22:27

Okay, in that case you proably don't need to see a surgeon at all - just make appointments with a couple of highly rated uro-oncologists- perhaps one in Prague and the Nanoknife specialists at Heidelberg, Germany as previously suggested?

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

User
Posted 23 Jul 2021 at 22:35

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
An oncologist won't be neutral - they deal with radiotherapy, brachytherapy, chemo, hormone treatment, etc. A urologist deals with surgery. You will struggle to find someone expert in both - that's why a man's diagnostics are discussed by a multi-disciplinary team before treatment choices are offered.

 

I think I will hire a council of doctors from one of the top hospitals in the world for the council to give a neutral second opinion then.

 

Would that be a smart choice?

I think you are in danger of over-thinking it all. Assuming you have loads of money to fund whatever treatment you decide on, two basic questions:-

1. Do you want a treatment that gives you a good chance of full remission but may have some side effects (permanent or temporary) that might impact on quality of life? OR 

2. Are you happy to go for a treatment with fewer side effects but accepting that it may not work?

If you settle on number 2, are you confident that you will have the money and emotional resilience to go through recurrence and having to repeat the treatment or have more invasive treatment in the future? 

Edited by member 23 Jul 2021 at 22:36  | Reason: Not specified

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

User
Posted 24 Jul 2021 at 02:52

There are are a number of things to remember concerning the diagnosis and treatment of PCa. Scans have improved considerably over recent years and better guided biopsies can be done but notwithstanding this the full extent of PCa remains unknown until the surgeon gets to see during a Prostatectomy how far the cancer has extended. He/she may wish to remove nerve bundles on one or both sides and possibly some lymph nodes. Sometimes a surgeon will have the lab test a sample during the operation. Even then, when all appears to be well contained, there is a small risk that some cancer cells have have escaped. With RT, the Oncologist can only rely on scans and biopsy findings which leaves more room for doubt. However, RT can be used to treat areas further from the Prostate.

Sometimes, having considered a case, a Multi Disciplinary Team may not recommend any particular treatment but just tell a man the options that are open to him and let him decide which he wants to go with.. This is because it is considered that each one of the options could treat as well as another. What could determine which option the patient selects may come down to the way he regards potential side effects, potential because these can vary in range and intensity from one patient to another though more generally from one treatment to another. A man may decide he wishes to lessen the risk of incontinence for instance or there may be other reasons, wishing to be rid of a cancerous Prostate rather than have it subjected to radiation for example. Then radiation is often given if surgery does not remove all the cancer but Prostatectomy after RT is not something many surgeons will do as it makes what is already an intricate operation even more difficult. With focal therapy as a primary treatment, it might need to be supplemented by RT or surgery down the line. These are just some of the reasons why you should have an input in treatment choice. So let's assume you do find this top and impartial consultant well versed in Urology and Oncology; what are you going to say if he leaves the choice of treatment down to you just like the MDT might do?

In my opinion, it is worth considering all treatment options that may be open to you and having considered these, have surgery by a well experienced surgeon of high repute, or a hospital that is able to offer various forms of radiation using advanced equipment or focal therapy by a top oncologist, assuming you have these choices.

In summary, remember that with the tools available to him/her the consultant or MDT may be unable or unwilling to make a firm recommendation for one form of treatment over another as a case can be made for and against them all in general, but your situation may be different. Therefore, it would be helpful for you to consider the pros and cons of each form of treatment. There are not many places that do Proton Beam should you consider this and it is new to us in the UK. There are several centres in Germany that offer it but it seems to be less expensive in Prague. Prostatectomy using different methods and various forms of RT are generally available in major hospitals in Europe, with focal therapy to a lesser extent.

PS I think it may help you get a better grasp of PCa if you download the 'Tool kit' from this charity which provides impartial information about the disease and treatments.

Edited by member 24 Jul 2021 at 12:39  | Reason: for clarity

Barry
User
Posted 25 Jul 2021 at 16:17

This link should work, 

https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

Hope you have a comfortable chair. Just remember this is a UK publication, presumably based on UK protocols.

Thanks Chris

Edited by member 25 Jul 2021 at 16:56  | Reason: Not specified

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User
Posted 21 Jul 2021 at 18:22

I think a coin with heads on one side and tails on the other is as good as you can get.

There is no certainty with this disease, no matter how hard you look. 

Dave

User
Posted 21 Jul 2021 at 18:41

Originally Posted by: Online Community Member

I think a coin with heads on one side and tails on the other is as good as you can get.

There is no certainty with this disease, no matter how hard you look. 

Thanks. 


So there are no people who are considered top of their field? I'm looking for someone to give third party neutral opinion not pushing for surgery or radiation.

________________________

59M, Gleason 4+3, PSA7.8, T2C.

DaVinci Surgery or HDR Brachytherapy+EBRT or Cyberknife(SBRT)?

User
Posted 21 Jul 2021 at 18:58

Unfortunately, this is a question that really can't be answered here. It is forbidden to name medical staff on this forum. You agreed to that when you signed up!

Best wishes,

Chris

Edited by member 21 Jul 2021 at 19:17  | Reason: Not specified

User
Posted 21 Jul 2021 at 19:56

Originally Posted by: Online Community Member

Unfortunately, this is a question that really can't be answered here. It is forbidden to name medical staff on this forum. You agreed to that when you signed up!

Best wishes,

Chris

I see, understandable.


Feels like it is the most important question one can have when it comes to treating prostate cancer.

 

If not here, where else could I possibly find such information? At least some tips or guidance?

________________________

59M, Gleason 4+3, PSA7.8, T2C.

DaVinci Surgery or HDR Brachytherapy+EBRT or Cyberknife(SBRT)?

User
Posted 21 Jul 2021 at 20:02

Originally Posted by: Online Community Member

So there are no people who are considered top of their field? I'm looking for someone to give third party neutral opinion not pushing for surgery or radiation.

There may be? I don't think you will find an expert in both surgery and RT, they are both very specialist subjects.

You may find some surgeons who will gladly take you, and others who will look at your diagnosis and say surgery's not for you, go see the RT guy, they might not know anything about RT but know enough about surgery that they want to wash their hands of you.

Then repeat the above paragraph replacing oncologist for surgeon, RT for Surgery and vice versa.

Now even if you do find the best specialists in the world, the reality is that this disease is a lot more random than the medical profession. The uncertainty is more likely to be in your own body than in the brains of the specialists, be they the best in the world, or just in the top 50 percent.

p.s. I think my radiotherapists was great. If I'm still alive in thirty years time I'm going to send her a thank you card. 

Edited by member 21 Jul 2021 at 20:18  | Reason: Not specified

Dave

User
Posted 21 Jul 2021 at 22:28
An oncologist won't be neutral - they deal with radiotherapy, brachytherapy, chemo, hormone treatment, etc. A urologist deals with surgery. You will struggle to find someone expert in both - that's why a man's diagnostics are discussed by a multi-disciplinary team before treatment choices are offered.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Jul 2021 at 03:30

You will appreciate that as a UK forum, nearly all of our members have their diagnosis and treatment in the UK. Frankly, I don't think any of our members would be sufficiently well informed as to be able to answer your question as framed, even if permitted to do so. There are many good oncologists as well as Urologists throughout the UK and Europe. You might even be able to get some names of highly regarded ones by approaching the profession direct but they will naturally favour their own discipline but should not try to push you into a treatment that could more appropriately be dealt with by another. Whoever you see will want to view your scan(s) and histology. Even so, they may want to do a further scan(s) and maybe further biopsy.

In your situation, I would put myself in the hands of one of the major hospitals in London or go to Germany which would be nearer to you and have them implement treatment after consideration and discussion with you. This promotional video shows a hospital of high standing with which I am familiar. You will note that they work in a very similar way to the UK by considering a case at a multi disciplinary meeting. https://www.youtube.com/watch?v=2cRYaIJXbvI

NB Corvid restrictions as applicable.

 

Edited by member 22 Jul 2021 at 03:53  | Reason: to highlight link

Barry
User
Posted 22 Jul 2021 at 12:46
Are there unusual aspects to your diagnosis that lead you to believe that the standard treatments would be unsuitable? Generally the choice is between surgery and radiotherapy, and given that their long-term outcomes are very similar (and both good) it boils down to which set of side-effects one finds less objectionable. I went down the HT/RT path and found it reasonably tolerable.

Best wishes,

Chris

User
Posted 22 Jul 2021 at 13:45
If you are in Britain your condition would be considered by a multi-disciplinary team, comprising clinicians from various disciplines, and you would be well advised to follow their treatment plan, if such a team exists where you are.

I must confess in the past to trying to find a doctor who tells me what I want to hear…

Cheers, John.

User
Posted 23 Jul 2021 at 22:03

Originally Posted by: Online Community Member
An oncologist won't be neutral - they deal with radiotherapy, brachytherapy, chemo, hormone treatment, etc. A urologist deals with surgery. You will struggle to find someone expert in both - that's why a man's diagnostics are discussed by a multi-disciplinary team before treatment choices are offered.

 

I think I will hire a council of doctors from one of the top hospitals in the world for the council to give a neutral second opinion then.

 

Would that be a smart choice?

________________________

59M, Gleason 4+3, PSA7.8, T2C.

DaVinci Surgery or HDR Brachytherapy+EBRT or Cyberknife(SBRT)?

User
Posted 23 Jul 2021 at 22:04

Originally Posted by: Online Community Member
Are there unusual aspects to your diagnosis that lead you to believe that the standard treatments would be unsuitable? Generally the choice is between surgery and radiotherapy, and given that their long-term outcomes are very similar (and both good) it boils down to which set of side-effects one finds less objectionable. I went down the HT/RT path and found it reasonably tolerable.

Best wishes,

Chris

 

I can't choose between SBRT Cyberknife / LDR Brachy / HDR Brachy / With Hormones or Without / Maybe TULSA even. 

Too many options

________________________

59M, Gleason 4+3, PSA7.8, T2C.

DaVinci Surgery or HDR Brachytherapy+EBRT or Cyberknife(SBRT)?

User
Posted 23 Jul 2021 at 22:27

Okay, in that case you proably don't need to see a surgeon at all - just make appointments with a couple of highly rated uro-oncologists- perhaps one in Prague and the Nanoknife specialists at Heidelberg, Germany as previously suggested?

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

User
Posted 23 Jul 2021 at 22:35

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
An oncologist won't be neutral - they deal with radiotherapy, brachytherapy, chemo, hormone treatment, etc. A urologist deals with surgery. You will struggle to find someone expert in both - that's why a man's diagnostics are discussed by a multi-disciplinary team before treatment choices are offered.

 

I think I will hire a council of doctors from one of the top hospitals in the world for the council to give a neutral second opinion then.

 

Would that be a smart choice?

I think you are in danger of over-thinking it all. Assuming you have loads of money to fund whatever treatment you decide on, two basic questions:-

1. Do you want a treatment that gives you a good chance of full remission but may have some side effects (permanent or temporary) that might impact on quality of life? OR 

2. Are you happy to go for a treatment with fewer side effects but accepting that it may not work?

If you settle on number 2, are you confident that you will have the money and emotional resilience to go through recurrence and having to repeat the treatment or have more invasive treatment in the future? 

Edited by member 23 Jul 2021 at 22:36  | Reason: Not specified

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

User
Posted 24 Jul 2021 at 02:52

There are are a number of things to remember concerning the diagnosis and treatment of PCa. Scans have improved considerably over recent years and better guided biopsies can be done but notwithstanding this the full extent of PCa remains unknown until the surgeon gets to see during a Prostatectomy how far the cancer has extended. He/she may wish to remove nerve bundles on one or both sides and possibly some lymph nodes. Sometimes a surgeon will have the lab test a sample during the operation. Even then, when all appears to be well contained, there is a small risk that some cancer cells have have escaped. With RT, the Oncologist can only rely on scans and biopsy findings which leaves more room for doubt. However, RT can be used to treat areas further from the Prostate.

Sometimes, having considered a case, a Multi Disciplinary Team may not recommend any particular treatment but just tell a man the options that are open to him and let him decide which he wants to go with.. This is because it is considered that each one of the options could treat as well as another. What could determine which option the patient selects may come down to the way he regards potential side effects, potential because these can vary in range and intensity from one patient to another though more generally from one treatment to another. A man may decide he wishes to lessen the risk of incontinence for instance or there may be other reasons, wishing to be rid of a cancerous Prostate rather than have it subjected to radiation for example. Then radiation is often given if surgery does not remove all the cancer but Prostatectomy after RT is not something many surgeons will do as it makes what is already an intricate operation even more difficult. With focal therapy as a primary treatment, it might need to be supplemented by RT or surgery down the line. These are just some of the reasons why you should have an input in treatment choice. So let's assume you do find this top and impartial consultant well versed in Urology and Oncology; what are you going to say if he leaves the choice of treatment down to you just like the MDT might do?

In my opinion, it is worth considering all treatment options that may be open to you and having considered these, have surgery by a well experienced surgeon of high repute, or a hospital that is able to offer various forms of radiation using advanced equipment or focal therapy by a top oncologist, assuming you have these choices.

In summary, remember that with the tools available to him/her the consultant or MDT may be unable or unwilling to make a firm recommendation for one form of treatment over another as a case can be made for and against them all in general, but your situation may be different. Therefore, it would be helpful for you to consider the pros and cons of each form of treatment. There are not many places that do Proton Beam should you consider this and it is new to us in the UK. There are several centres in Germany that offer it but it seems to be less expensive in Prague. Prostatectomy using different methods and various forms of RT are generally available in major hospitals in Europe, with focal therapy to a lesser extent.

PS I think it may help you get a better grasp of PCa if you download the 'Tool kit' from this charity which provides impartial information about the disease and treatments.

Edited by member 24 Jul 2021 at 12:39  | Reason: for clarity

Barry
User
Posted 25 Jul 2021 at 15:44

Originally Posted by: Online Community Member

There are are a number of things to remember concerning the diagnosis and treatment of PCa. Scans have improved considerably over recent years and better guided biopsies can be done but notwithstanding this the full extent of PCa remains unknown until the surgeon gets to see during a Prostatectomy how far the cancer has extended. He/she may wish to remove nerve bundles on one or both sides and possibly some lymph nodes. Sometimes a surgeon will have the lab test a sample during the operation. Even then, when all appears to be well contained, there is a small risk that some cancer cells have have escaped. With RT, the Oncologist can only rely on scans and biopsy findings which leaves more room for doubt. However, RT can be used to treat areas further from the Prostate.

Sometimes, having considered a case, a Multi Disciplinary Team may not recommend any particular treatment but just tell a man the options that are open to him and let him decide which he wants to go with.. This is because it is considered that each one of the options could treat as well as another. What could determine which option the patient selects may come down to the way he regards potential side effects, potential because these can vary in range and intensity from one patient to another though more generally from one treatment to another. A man may decide he wishes to lessen the risk of incontinence for instance or there may be other reasons, wishing to be rid of a cancerous Prostate rather than have it subjected to radiation for example. Then radiation is often given if surgery does not remove all the cancer but Prostatectomy after RT is not something many surgeons will do as it makes what is already an intricate operation even more difficult. With focal therapy as a primary treatment, it might need to be supplemented by RT or surgery down the line. These are just some of the reasons why you should have an input in treatment choice. So let's assume you do find this top and impartial consultant well versed in Urology and Oncology; what are you going to say if he leaves the choice of treatment down to you just like the MDT might do?

In my opinion, it is worth considering all treatment options that may be open to you and having considered these, have surgery by a well experienced surgeon of high repute, or a hospital that is able to offer various forms of radiation using advanced equipment or focal therapy by a top oncologist, assuming you have these choices.

In summary, remember that with the tools available to him/her the consultant or MDT may be unable or unwilling to make a firm recommendation for one form of treatment over another as a case can be made for and against them all in general, but your situation may be different. Therefore, it would be helpful for you to consider the pros and cons of each form of treatment. There are not many places that do Proton Beam should you consider this and it is new to us in the UK. There are several centres in Germany that offer it but it seems to be less expensive in Prague. Prostatectomy using different methods and various forms of RT are generally available in major hospitals in Europe, with focal therapy to a lesser extent.

PS I think it may help you get a better grasp of PCa if you download the 'Tool kit' from this charity which provides impartial information about the disease and treatments.

Where do I download this information kit you speak of?

________________________

59M, Gleason 4+3, PSA7.8, T2C.

DaVinci Surgery or HDR Brachytherapy+EBRT or Cyberknife(SBRT)?

User
Posted 25 Jul 2021 at 16:17

This link should work, 

https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

Hope you have a comfortable chair. Just remember this is a UK publication, presumably based on UK protocols.

Thanks Chris

Edited by member 25 Jul 2021 at 16:56  | Reason: Not specified

 
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