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Stage 4 Prostate removals?

User
Posted 28 Dec 2017 at 14:58
Has anyone at stage 4 had their prostate removed?
I read of a new trial in the evening standard where this is being offered as a trial .
User
Posted 30 Dec 2017 at 07:37
Thank you all for your replies I can confirm that I am black African.
I was treated with enzaclutamide After my first chemotherapy, it only worked on me from February to August 2017, when my PSA count short up again As I have already said between August and October 2017, when the enzaclutamide was stop so I was then started my second set of chemotherapy November 2017, my chances are not very good at the moment, which is why I am looking at every options. I intend to fight to the end.
I had a good day in London with my daughter yesterday 👍🏽.

PMA all the way.
User
Posted 29 Dec 2017 at 09:12

I look forward to the results of 'stage IV surgery trials', though I strongly suspect that stage IV radiotherapy would be more effective at preventing new metastases, and I'd bet a million that only chemo can have any 'curative' effect on existing mets.


The mothership analogy, I believe, bends the truth: yes, the primary tumour is responsible for 'launching' metastases - I've never heard of mets from mets being significant in any cancer - and conceivably, the primary tumour stimulates the mets by releasing hormones, though no-one has yet found any evidence of that.


But there is no way that removing the primary will cause regression in the metastases, and even 'growth limiting' depends on the totally unproven 'hormone stimulus' theory.


I'm quite sure that earlier and better chemo is going to be the answer: for both treatment and minimal side effects reasons. And I really hope that answer comes soon, then they might accept that aiming for cure is a better gamble than hoping the man dies of something else before PCa gets him. For every other cancer, they argue 'treating early is always the best'. Only for PCA do they say 'lets watch it grow for a while' and then 'let's slow it down with with hormones', before finally saying, "Well, sorry, but it's spread - we can't cure you now".

.
-- Andrew --
"I intend to live forever, or die trying" - Groucho Marx
User
Posted 29 Dec 2017 at 07:12
Hi, slightly different but I was given radiotherapy when I was diagnosed despite being T4n1m1a, I asked why ( this was December 2014) and my onco said, there is some evidence that blasting the mother ship will reduce rate of growth at a later time, I also asked why not removal and he said as Lyn has above that the side effects of removal were too big a risk. Remember that was 3 years ago. I have never heard of any other man having radiotherapy with advanced Pca ( I am sure there are some) but here I am 3 years on, initial PSA 342 with a PSA of 0.13 and still running ultra marathons so who knows what extra time early chemo and radiotherapy may or may not have given me ?
So I guess what I am saying is why dont you ask for radiotherapy now and see what is said?
Kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

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User
Posted 28 Dec 2017 at 15:02

We have one member here that has recently been offered this but up until this trial was launched the expert view has been that if there is no prospect of cure, the risks and side effects of surgery are too life-changing to contemplate.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Dec 2017 at 20:39
Thank you so much for your reply.
I had that conversation with my consultant today, and he said the same as you.
I believe in never giving up, so I will carry on fighting.PMA all the way.
User
Posted 28 Dec 2017 at 22:01

You could ask for a referral to one of the consultants involved in the trial - even if you weren’t suitable, you might at least feel you had done everything you could?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Dec 2017 at 07:12
Hi, slightly different but I was given radiotherapy when I was diagnosed despite being T4n1m1a, I asked why ( this was December 2014) and my onco said, there is some evidence that blasting the mother ship will reduce rate of growth at a later time, I also asked why not removal and he said as Lyn has above that the side effects of removal were too big a risk. Remember that was 3 years ago. I have never heard of any other man having radiotherapy with advanced Pca ( I am sure there are some) but here I am 3 years on, initial PSA 342 with a PSA of 0.13 and still running ultra marathons so who knows what extra time early chemo and radiotherapy may or may not have given me ?
So I guess what I am saying is why dont you ask for radiotherapy now and see what is said?
Kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 29 Dec 2017 at 08:28
Thank you so much for your reply. I had radiotherapy in 2015, with a PSA of 222.6 at the time, this was reduced to 6 after 37.5 weeks of radiotherapy, followed by chemotherapy in August to December 2016.
Now in October this year my count went up to 56, so started new chemotherapy in November, hopefully a 10 courses.
I joined this group only yesterday after resisting for a long time, I am now glad I did.
I have always been a positive person, and avoid negativity as much as I can.
User
Posted 29 Dec 2017 at 09:12

I look forward to the results of 'stage IV surgery trials', though I strongly suspect that stage IV radiotherapy would be more effective at preventing new metastases, and I'd bet a million that only chemo can have any 'curative' effect on existing mets.


The mothership analogy, I believe, bends the truth: yes, the primary tumour is responsible for 'launching' metastases - I've never heard of mets from mets being significant in any cancer - and conceivably, the primary tumour stimulates the mets by releasing hormones, though no-one has yet found any evidence of that.


But there is no way that removing the primary will cause regression in the metastases, and even 'growth limiting' depends on the totally unproven 'hormone stimulus' theory.


I'm quite sure that earlier and better chemo is going to be the answer: for both treatment and minimal side effects reasons. And I really hope that answer comes soon, then they might accept that aiming for cure is a better gamble than hoping the man dies of something else before PCa gets him. For every other cancer, they argue 'treating early is always the best'. Only for PCA do they say 'lets watch it grow for a while' and then 'let's slow it down with with hormones', before finally saying, "Well, sorry, but it's spread - we can't cure you now".

.
-- Andrew --
"I intend to live forever, or die trying" - Groucho Marx
User
Posted 29 Dec 2017 at 10:05
Originally Posted by: Online Community Member


The mothership analogy, I believe, bends the truth: yes, the primary tumour is responsible for 'launching' metastases - I've never heard of mets from mets being significant in any cancer - and conceivably, the primary tumour stimulates the mets by releasing hormones, though no-one has yet found any evidence of that.

But there is no way that removing the primary will cause regression in the metastases, and even 'growth limiting' depends on the totally unproven 'hormone stimulus' theory.



You best contact Mr Sooriakumaran and his colleagues at UCLH, Guys and the Royal Marsden to let them know, Heenan - if you are correct, they are wasting a lot of NHS money!!!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Dec 2017 at 10:11
Originally Posted by: Online Community Member
Thank you so much for your reply. I had radiotherapy in 2015, with a PSA of 222.6 at the time, this was reduced to 6 after 37.5 weeks of radiotherapy, .
.


Ah, this is another very good reason for not being able to have your prostate removed. RT makes the prostate gloopy rather than solid, which makes it almost impossible to remove intact. The risk of side effects such as permanent incontinence and / or bowel damage are much, much higher, the risk of leaving bits behind is much higher and it would probably require open surgery rather than keyhole so much longer recovery period.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Dec 2017 at 10:15

PS Cyril, if you are black African it would be useful to 8nclude that in your profile to remind other members when they are replying to you. Sadly, prostate cancer is much more common and often far more aggressive in black men.

You may find it helpful to read some of Candyman’s old posts - he was a much loved member of the community.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Dec 2017 at 16:35
Hi Cryil, sorry that You need chemo again. Out of interest have they tried you on abiraterone or enzaclutamide yet as I have been on abiraterone after my PSA rise again and to date that has been doing fine? Presume you are on docetaxl?

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 30 Dec 2017 at 07:37
Thank you all for your replies I can confirm that I am black African.
I was treated with enzaclutamide After my first chemotherapy, it only worked on me from February to August 2017, when my PSA count short up again As I have already said between August and October 2017, when the enzaclutamide was stop so I was then started my second set of chemotherapy November 2017, my chances are not very good at the moment, which is why I am looking at every options. I intend to fight to the end.
I had a good day in London with my daughter yesterday 👍🏽.

PMA all the way.
 
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