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Surgery for advanced stage PC

User
Posted 12 December 2017 11:24:57(UTC)

Hi Guys

As this is the route I took and although not cured, it has been 5 years since diagnosis with a PSA of 94.4 and. I am still here with no regrets of the path I chose, although I had to go private it was worth it, so it will be interesting to see what the outcome of the trial reveals.

"Men with the deadliest form of prostate cancer are being offered surgery on the NHS for the first time in a trial aiming to save lives, the Standard can reveal.
"London surgeons are leading the UK’s participation in an international project that is investigating whether removing the prostate can slow or even stop the spread of cancer in the bones.
"Under NHS rules, men whose cancer is found to have spread, or metastasised, are not offered surgery as the disease is deemed too advanced. Instead they receive hormone treatment followed by chemotherapy and possibly immunotherapy. Survival does not usually extend beyond five years.
"Prostate cancer is the most common cancer in men and is the second most deadly after lung cancer — causing 11,300 male deaths a year in Britain.
"The trial is being led by Prasanna Sooriakumaran, a consultant urological surgeon at UCLH at Westmoreland Street. He believes it has the potential to benefit a “huge number”.
"A total of 21 men have taken part in the trial to date — 17 at UCLH in Westmoreland Street, three in the Royal Surrey County Hospital in Guildford and one in Oxford. The trial is separate to the 500 robot-assisted prostate removal operations this year at UCLH.
"The trial, which will also make use of UCLH’s two £1 million robots, uses scans to differentiate between men whose cancer has spread in up to three areas — those most likely to benefit — and those who are more widely affected.
"Mr Sooriakumaran, known as PS, said: “It’s like the prostate being the mothership and the secondary areas in the bones being the satellites.
"The theory is that if you remove the mothership it stops the satellites from progressing. In some cases it will not only prolong survival, we are hoping it will cure the man. This is giving hope to men who didn’t have hope.”
"Early indications are positive, with PSA tests on the first patients indicating the extent of their cancer has fallen after surgery. The aim is to prove that removing the prostate can improve survival rates by 30 per cent.
"The Royal Marsden and Guy’s have just joined the trial, with other hospitals in England, Germany, Sweden and Austria also taking part. A total of 418 volunteers are being sought."
standard.co.uk/news/health/...

Roy
Thanked 1 time
User
Posted 13 December 2017 20:36:43(UTC)
Roy thank you for posting this .
Myself and Si had a interesting conversation about this a few years ago and out thoughts were very similar , if you could stop the mother ship from sending out more diseased cells then maybe you could at least slow progression .
It kind of makes a mockery of the fact that you would operate on breast cancer even though it has already spread and wouldn’t attempt operating on prostate cancer .

Maybe it doesn’t help extend lives once the cells have left the mothership and I understand that , probably more than most .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 2 times
User
Posted 13 December 2017 23:41:29(UTC)
I remember five years ago researching my options just like we see most days on this forum, and as my initial consultant was arrogance personified I decided to go my own way and not accept the "Gold standard" being offered to me as the best course of action. During my research I came across a study which wasn't looking at this particular option of RP for advanced people like me but surprisingly threw up statistics which seemed to show that by removing the prostate had a positive affect on the outcome, so I decided to find someone that would take my theory seriously as to removal of my prostate, and he managed to remove over 99% of the problem so I believe that has helped me gain more quality time with my family.

All the best

Roy
Thanked 2 times
User
Posted 16 December 2017 22:28:19(UTC)
To be fair, I was offered early chemo and rt because at the time (not now) I was private, at that time early chemo had not been signed off by nice and as you say I have not heard of anyone else having rt once spread,
What I don't get from the study is if rt, removal or bracheathapy is ok for contained Pc i.e. Cureable , why is the study only looking at removal for advanced. If only removal is the answer for advanced then surely removal is th only option before?
What do I know 2+ 2 = 5
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
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User
Posted 12 December 2017 14:42:38(UTC)

Interesting reading Roy.

Does it mean that the "mothership" having been destroyed, her satellites will die naturally or will those men who have spread still need treating.

Have I read it wrong?

Even if the mothership is remove, Surely the spread will have a life of it's own, even if a weakened life, that will have the potential to grow?

Wouldn't it be wonderful though if it actually worked?

We can't control the winds - but we can adjust our sails
User
Posted 12 December 2017 16:01:42(UTC)

An interesting trial Roy. Very thought provoking.

My understanding of cancer, which is limited and imperfect, is that if you remove the main tumour (the mothership), this causes the satellites to become more active as there is a bigger supply of nutrients available now the mothership doesn't need any. It's almost like a signal to them to increase their activity. I am sure I read something along these lines somewhere......

I will await those with more knowledge than me to correct this.

 

Ian

 

User
Posted 12 December 2017 20:42:54(UTC)

I think the theory is that if you destroy the source of the Mets, it is much less likely for further Mets to develop, i.e., from the existing Mets. It would be good to have confirmation of this theory!

AC

User
Posted 13 December 2017 00:43:01(UTC)

I think the trial may show a correlation between the thoughts expressed by Ian and AC, ie in some cases men may benefit and for others the mets will become more severe. How often do we learn that men offered the same treatment can have very different results and sometimes even opposing treatments are given. An example of this is giving HT to reduce testosterone but testosterone supplements being trialled as PCa treatment.

According to a widely and highly regarded doctor, when cancer cells leave the prostate they develop increased heterogeneity and in such cases removing the mother-ship may not help. Here is a link which becomes very interesting when past the accreditations:- https://www.youtube.com/watch?v=NkqizmvqJPo

Barry
User
Posted 13 December 2017 10:21:21(UTC)
A very interesting presentation in the video Barry. Some amazing successes but acknowledgement that for some the disease just keeps coming back. Thanks for sharing the link. Ian.
User
Posted 13 December 2017 10:40:54(UTC)

Very interesting read. Lets hope  its another small step for man kind in saving lives from this horrible disease

Thanked 1 time
User
Posted 13 December 2017 20:36:43(UTC)
Roy thank you for posting this .
Myself and Si had a interesting conversation about this a few years ago and out thoughts were very similar , if you could stop the mother ship from sending out more diseased cells then maybe you could at least slow progression .
It kind of makes a mockery of the fact that you would operate on breast cancer even though it has already spread and wouldn’t attempt operating on prostate cancer .

Maybe it doesn’t help extend lives once the cells have left the mothership and I understand that , probably more than most .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 2 times
User
Posted 13 December 2017 23:41:29(UTC)
I remember five years ago researching my options just like we see most days on this forum, and as my initial consultant was arrogance personified I decided to go my own way and not accept the "Gold standard" being offered to me as the best course of action. During my research I came across a study which wasn't looking at this particular option of RP for advanced people like me but surprisingly threw up statistics which seemed to show that by removing the prostate had a positive affect on the outcome, so I decided to find someone that would take my theory seriously as to removal of my prostate, and he managed to remove over 99% of the problem so I believe that has helped me gain more quality time with my family.

All the best

Roy
Thanked 2 times
User
Posted 14 December 2017 06:39:55(UTC)
Reading this post is the first time I have seen any other support for what happened to me in April-June 2015.
I was diagnosed Nov 2014, had early chemo Jan-mar 2015 and then unexpectedly my onco told me I was to have RT on my prostate.
Everything I had read (mainly on this forum) had not mentioned that option so I asked why and his words were "there is some evidence that blasting the mother ship may reduce the speed of spread". So whilst not removal still an attempt to kill of the production. I did ask why not remove, he said whilst it may have the same effect , the side effects (incontinence, short term quality of life etc) were not worth it for potentially the same outcome.
My PSA was 342 Gleason 9 t4n1m1a, the cancer had only spread to lymphs but those lymphs are outside the pelvic area.
I can't telll you if my RT had any effect ( it did give me radiation proctitis) but here I am still, PSA 0.13, 23 months into abiraterone.
I know that abbi won't last forever and my PSA will rise again but I don't know if the RT slowed or has halted the spread for the last 2.5 years. As at this time I don't believe I have any bone mets from my last scan.
I was/am treated at the marsden.
Are the forum aware of other men who had RT when diagnosed with advanced PC?
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
User
Posted 16 December 2017 20:21:12(UTC)
Thank you for all the interesting posts here.

In my ignorance I still don't really understand why the prostate isn't operated on once the Pca has spread in a bid to 'reduce its power.' so I was really pleased to see that this trial is happening.

*Irun* I haven't read about anyone having the same RT treatment as you - it hasn't been offered to my husband but that might be because his spread is bones as well as lymph nodes.
User
Posted 16 December 2017 22:28:19(UTC)
To be fair, I was offered early chemo and rt because at the time (not now) I was private, at that time early chemo had not been signed off by nice and as you say I have not heard of anyone else having rt once spread,
What I don't get from the study is if rt, removal or bracheathapy is ok for contained Pc i.e. Cureable , why is the study only looking at removal for advanced. If only removal is the answer for advanced then surely removal is th only option before?
What do I know 2+ 2 = 5
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
Thanked 2 times
User
Posted 16 December 2017 23:49:23(UTC)

You may be over-thinking it, Irun. PS is a surgeon specialising in robotic RP and has been awarded a scholarship to undertake this research. He is also considered to be one of the bright young things. If he had been an oncologist specialising in IMRT or brachy, then presumably they would have given him an award to undertake that research instead. Just because he got some money for looking at whether surgery can slow advanced PCa, I don't think that automatically means that other radical treatments couldn't also do the same.

Based on your outcomes, perhaps your onco should be encouraged to apply for a trial sponsorship as well???

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


 
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