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Thought I had decided - then saw this

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User
Posted 09 Apr 2023 at 23:34

Hi all

I thought I had decided that RP was the best course of treatment for me, given my age and stage of cancer, then I saw this tonight. 
A very short video. 
It feels like I’m about to make a life changing decision and I’m dreading making the wrong one πŸ˜”

Any thoughts on this?

https://youtu.be/Pya8N78bR7s

Thank you

Greg. 

User
Posted 10 Apr 2023 at 08:30
Failure rate for radiotherapy isnt far behind RP:

https://pubmed.ncbi.nlm.nih.gov/35934601/

I think the real benefit you get from RP is guaranteed local control (no prostate!). The above study confirms local recurrence after RT is a significant mortality risk

User
Posted 10 Apr 2023 at 08:41

A large sample of people but results from 1985 to 2015 are based on old RT technology and there have been giant improvements in recent years.

Jules

User
Posted 10 Apr 2023 at 11:06

Hello 

Read my profile as it gives the full story .I had a Robotic prostectomy in 2020 it was not successful so I had to have salvage  RT and hormone therapy .For three years now since the salvage treatment my PSA has been undetectable and scans clear .I read a very interesting book by Dr Patrick Walsh called ' Surviving Prostate Cancer in which he refers to the Prostate if it remains in the body acting as a kind of 'Mother Ship' that sends out chemical messages to cancer cells circulating in the body to form Mets . If the prostate is removed then it no longer can send out these chemical messages. In fact I believe there is a trial on at the moment to see if removal of the prostate in situations where it would not  normally be removed eg where the cancer was deemed to have spread outside the Prostate and only RT offered gives a better outcome .

In my case this appears to be true .I just wanted my prostate removed once I knew the cancer had become agressive .RT does not always kill all the cancer cells in the prostate but if the prostate isn't there there it is obvious there is less cancer for any salvage treatment to attack and if the circulating cancer cells have no source to get chemical messages from then any further treatment has more of a chance if knocking the cancer out .

 

 

 

 

 

 

User
Posted 10 Apr 2023 at 12:04

I went the radiotherapy hormone therapy route mainly not keen on operations and side effects seem worse with radical prosectomy 3years on after 37 fractions off radiotherapy and finished hormone therapy last year  psa now 0.01from 24.9 and life back more or less normal like anyone having treatment I know things can change at any time whatever treatment you have but have been happy with the new linear machines at the city hospital good luck whichever way you go gaz πŸ‘

Edited by member 10 Apr 2023 at 12:06  | Reason: Not specified

User
Posted 10 Apr 2023 at 12:15

Thanks Libra and Gaz

Glad you’re now both clear, long may it remain that way. 
Cheers

Greg

User
Posted 10 Apr 2023 at 12:30
Robotic surgery has been a considerable advance but advances in Radiotherapy have seen more ongoing refinements and I wouldn't disagree with much Dr Scholz said, although I don't understand why he lumped Focal Therapy in with Radiotherapy. He could have made clearer that this was a generalization which is not so cut and dry as he says. Because patients can present quite differently it is firstly most important to assess treatment on what best suits an individual and his attitude to it. Lyn has illustrated this in her post.
Barry
User
Posted 10 Apr 2023 at 19:15

Hi Greg,

I think after you’ve seen the surgeon, you’ll be able to make a decision much more easily.

When I had to make a decision about 39 fractions or 20 fractions of RT, my wife and I looked at each other ant the meeting with the oncologist and both agreed immediately that 39 fractions was the way to go.
Of course it wasn’t to be but you know the story….and I still don’t really understand why I wasn’t given the option of surgery, perhaps a bigger chance of recurrence requiring SRT but maybe that’s a choice I should have been given to make..I sometimes wonder whether it comes down to fundingπŸ€”πŸ€”πŸ€”

User
Posted 11 Apr 2023 at 12:59

That’s great news John and I’m glad you’re through it safe and well. 

I agree that specialists in their field will push a certain treatment and may even have an agenda to do so. The last consultant I saw was just the urology consultant so he doesn’t really have an axe to grind either way, he actually said “say what you want and we’ll try our best to make it happen” .. I’m sure the surgeon will be completely different. 
Though I do think my other health conditions will definitely come into play in whether he decides if I’m capable of withstanding the operation. I have some serious and severe abdominal pains that have been getting worse for the year that I have been on the gastro waiting list. My case is due for review this week so my GP has been hounding them to try to get them to see me. Let’s see how that goes then … gulp. 

Unfortunately I am only offered either RP or RT at my local hospital but the hospital I’m going to see the surgeon at is 2 hours from me…and they do offer brachytherapy (which I was interested in finding more about) so I will ask the surgeon if I can speak with someone about it when I’m there. 

Thanks for the info

cheers

Greg. 

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User
Posted 10 Apr 2023 at 00:07

That's a terrible video, quite besides it's getting on for 4 years old now - I think it mainly shows he doesn't know much about modern prostatectomy, or that prostatectomy in the US is behind where we are in the UK (which I doubt is the case). His comments on radiotherapy aren't too bad, but ignore what he says about prostatectomy.

Having said that, it would seem that given 30% of prostatectomy patients will need further treatment, there may be too many high risk patients going for prostatectomy, but that decision should be based on a balanced view, which that video isn't. Also, many prostatectomy patients don't seem to understand the risks to continence and erectile function, although no treatment is without risks.

 

User
Posted 10 Apr 2023 at 07:41

Really interested in this as  OH wrestling with this very issue. 
I thought the PCRI videos  were really helpful and informative. Here’s their latest one saying the same things - obviously Dr Scholz still has a beef about RP but is this still a terrible outdated view Andy? In their latest (March 2023) online conference there was a colleague of Dr Scholz  who was a surgeon advocating for RP so guess it very much is their own professional opinion

https://m.youtube.com/watch?v=ryR6ieRoVFg

User
Posted 10 Apr 2023 at 08:30
Failure rate for radiotherapy isnt far behind RP:

https://pubmed.ncbi.nlm.nih.gov/35934601/

I think the real benefit you get from RP is guaranteed local control (no prostate!). The above study confirms local recurrence after RT is a significant mortality risk

User
Posted 10 Apr 2023 at 08:41

A large sample of people but results from 1985 to 2015 are based on old RT technology and there have been giant improvements in recent years.

Jules

User
Posted 10 Apr 2023 at 09:40
Greg, cut out all the machine noise (online videos, Google, or from people here)and stay focused on your very individual circumstances. If you opt for RT with HT, you may not get a new kidney when you need it because no one will be able to say whether you are cancer-free.

Dr Scholz wasn't addressing your specific issue. Yes, RP has some potential side effects and it recurs in about 30% of cases. RT also has potential side effects and recurs in about 30% of cases. The side effect of not being offered a new kidney because you may have PCa is what ... long term dialysis followed by kidney failure and an early death?

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

User
Posted 10 Apr 2023 at 10:33

I wouldn’t go as far to say he hasn’t a clue what he’s talking about but I do agree that many people have their own reasons and even agenda to favour one treatment or another. 
It wasn’t me that needs a new kidney Lyn, that was Nig14, but yes I am drowning in noise at the moment so thanks for giving me a “virtual shake”

I should be getting my appointment with the surgeon and anaesthetist soon so will see what the outcome of that it. 
Thank you

Greg  

 

User
Posted 10 Apr 2023 at 11:06

Hello 

Read my profile as it gives the full story .I had a Robotic prostectomy in 2020 it was not successful so I had to have salvage  RT and hormone therapy .For three years now since the salvage treatment my PSA has been undetectable and scans clear .I read a very interesting book by Dr Patrick Walsh called ' Surviving Prostate Cancer in which he refers to the Prostate if it remains in the body acting as a kind of 'Mother Ship' that sends out chemical messages to cancer cells circulating in the body to form Mets . If the prostate is removed then it no longer can send out these chemical messages. In fact I believe there is a trial on at the moment to see if removal of the prostate in situations where it would not  normally be removed eg where the cancer was deemed to have spread outside the Prostate and only RT offered gives a better outcome .

In my case this appears to be true .I just wanted my prostate removed once I knew the cancer had become agressive .RT does not always kill all the cancer cells in the prostate but if the prostate isn't there there it is obvious there is less cancer for any salvage treatment to attack and if the circulating cancer cells have no source to get chemical messages from then any further treatment has more of a chance if knocking the cancer out .

 

 

 

 

 

 

User
Posted 10 Apr 2023 at 12:04

I went the radiotherapy hormone therapy route mainly not keen on operations and side effects seem worse with radical prosectomy 3years on after 37 fractions off radiotherapy and finished hormone therapy last year  psa now 0.01from 24.9 and life back more or less normal like anyone having treatment I know things can change at any time whatever treatment you have but have been happy with the new linear machines at the city hospital good luck whichever way you go gaz πŸ‘

Edited by member 10 Apr 2023 at 12:06  | Reason: Not specified

User
Posted 10 Apr 2023 at 12:15

Thanks Libra and Gaz

Glad you’re now both clear, long may it remain that way. 
Cheers

Greg

User
Posted 10 Apr 2023 at 12:30
Robotic surgery has been a considerable advance but advances in Radiotherapy have seen more ongoing refinements and I wouldn't disagree with much Dr Scholz said, although I don't understand why he lumped Focal Therapy in with Radiotherapy. He could have made clearer that this was a generalization which is not so cut and dry as he says. Because patients can present quite differently it is firstly most important to assess treatment on what best suits an individual and his attitude to it. Lyn has illustrated this in her post.
Barry
User
Posted 10 Apr 2023 at 12:46

Thanks Barry

The urology consultant did say that the surgeon will go through my whole case again from the start and he may indeed deem that surgery is not an option for me anyway - time will tell I guess. 

I just want to wake up one morning and for all of this to have been a dream … a bad dream. πŸ₯΄

Cheers 

Greg. 

User
Posted 10 Apr 2023 at 19:15

Hi Greg,

I think after you’ve seen the surgeon, you’ll be able to make a decision much more easily.

When I had to make a decision about 39 fractions or 20 fractions of RT, my wife and I looked at each other ant the meeting with the oncologist and both agreed immediately that 39 fractions was the way to go.
Of course it wasn’t to be but you know the story….and I still don’t really understand why I wasn’t given the option of surgery, perhaps a bigger chance of recurrence requiring SRT but maybe that’s a choice I should have been given to make..I sometimes wonder whether it comes down to fundingπŸ€”πŸ€”πŸ€”

User
Posted 10 Apr 2023 at 19:41

Hi Derek

I’m sure you’re right. I’ll get a feel for the surgeon himself too, I’m sure you should have a connection with someone who’s about to chop you up, so we’ll see how that goes 😊

The second urology consultant I saw, who gave me the diagnosis, didn’t offer any thoughts on what he thought may be right for my situation. The third was a very personable man and although he did not try to persuade me either way, he did stick his neck out (after I had said surgery) and say he thought that was probably best in my position. 

He did say that if I was 15 years older then he would probably recommend RT as the way to go. 

I’m going to stop looking and reading, at least until I’ve spoken to the surgeon, to (as Lyn said) cut out some of the noise. 

cheers

Greg. 

Edited by member 10 Apr 2023 at 19:43  | Reason: Typo

User
Posted 10 Apr 2023 at 19:48

It wasn’t me that needs a new kidney Lyn, that was Nig14

I am so sorry, Greg! 😱🀦🏼‍♂️

Edited by member 10 Apr 2023 at 19:48  | Reason: Italics

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

User
Posted 10 Apr 2023 at 20:02

I still needed the virtual kick up the jacksie so thank you Lyn 😊

User
Posted 11 Apr 2023 at 12:45

Hi 

I was diagnosed in 2016 with prostate cancer PSA 2.19 Gleason 3+4+7 after a private medical that found microscopic blood in my urine. I had a meeting with a specialist at my local hospital and i got the impression that there was no question that he believed his robotic surgery was the best option for me and i may well have taken him up on it if i had not had a friend that had had Brachytherapy two years earlier.

I asked to see the Brachytherapy specialist that was at the hospital that day and was assured that brachytherapy was also a good option with my numbers.

I saw the first specialist as a salesman filling a quota for his Robotic hardware at his hospital but i did have to go to another hospital for my brachytherapy and was very pleased with the result.

I am six and a half years on from brachytherapy and was signed off in 2021 with Psa 0.04.

Regards John.

User
Posted 11 Apr 2023 at 12:59

That’s great news John and I’m glad you’re through it safe and well. 

I agree that specialists in their field will push a certain treatment and may even have an agenda to do so. The last consultant I saw was just the urology consultant so he doesn’t really have an axe to grind either way, he actually said “say what you want and we’ll try our best to make it happen” .. I’m sure the surgeon will be completely different. 
Though I do think my other health conditions will definitely come into play in whether he decides if I’m capable of withstanding the operation. I have some serious and severe abdominal pains that have been getting worse for the year that I have been on the gastro waiting list. My case is due for review this week so my GP has been hounding them to try to get them to see me. Let’s see how that goes then … gulp. 

Unfortunately I am only offered either RP or RT at my local hospital but the hospital I’m going to see the surgeon at is 2 hours from me…and they do offer brachytherapy (which I was interested in finding more about) so I will ask the surgeon if I can speak with someone about it when I’m there. 

Thanks for the info

cheers

Greg. 

User
Posted 17 Apr 2023 at 23:57

Just as well lyn isn't a surgeon!

Cooleymountain 

User
Posted 18 Apr 2023 at 00:07

If ever I need a leg amputated I'm going to tattoo "NOT this one" on the good leg.

Dave

User
Posted 18 Apr 2023 at 00:11

Greg 

The video, indeed the many videos of Dr Schultz are sound. It's a hard call to make. For what it's worth I struggled between deciding on RT and RP. Then despite many conversations , I realised that because my cancer is aggressive and advanced this was not the choice. The choice that I was facing was between RP and RT with HT. Radiation therapy and hormone therapy. 

 Just be aware of this. I am now on Hormone Treatment for two years. I do hope that combined with RT it will beat the cancer but I will have no sex life (as I previously knew it) for two years.

 

 

Edited by member 18 Apr 2023 at 00:21  | Reason: Not specified

Cooleymountain 

 
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