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Stage 4 Prostate removals?

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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 ๐Ÿ‘๐Ÿฝ.

PMA all the way.
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 doing the 600 mile Camino de Santiago May 2019

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 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 doing the 600 mile Camino de Santiago May 2019

User
Posted 11 Dec 2018 at 10:46

Thank you so much for your support. Your words mean a lot to me. I am a black man and you know the effects prostate cancer and black men, so its very important for your man to get tested regularly.

Show Most Thanked Posts
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 werenโ€™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 doing the 600 mile Camino de Santiago May 2019

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 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 Candymanโ€™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 doing the 600 mile Camino de Santiago May 2019

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 ๐Ÿ‘๐Ÿฝ.

PMA all the way.
User
Posted 08 Dec 2018 at 10:26

My PSA count is now above 750, has anyone had higher and is there a record for the highest count?


my cancer is now in my bones and liver?

Edited by member 08 Dec 2018 at 10:37  | Reason: Not specified

User
Posted 08 Dec 2018 at 10:48
Sorry to see that Cyril but hope is not lost - Trevor_Boothe's PSA went up and down a lot (his highest was 13,000 at diagnosis) but even when it was hanging around the 5,000 mark he was still relatively well. The main concern in your case is that the cancer is spreading - are you back on the enzalutimide? If not, what treatment are you on at the moment?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Dec 2018 at 13:35

Thank you so much for your qu response. That treatment stopped working, The hospital said that I have run out of normal chemotherapy treatment, and this week I started a trial chemo treatment called “ Carboplatin with onl a 10-15% response, but I hope to be in that 10-15 %.


PMA all the way.

User
Posted 08 Dec 2018 at 20:39
Cyril, never had that trial drug, of course, but I twice have had platinum based chemo for bladder cancer, on which it was effective, but more to the point it had the major effect of causing my PSA to drop markedly. I hope it works for you too!

AC
User
Posted 09 Dec 2018 at 06:40

Thank you so much, I live in hope. ๐Ÿ‘๐Ÿฟ๐Ÿ™๐Ÿฟ๐ŸฅŠ

User
Posted 10 Dec 2018 at 20:06
Cyril, I wish you all the best with your ongoing treatment. My dad (white/British) has Pca and my partner is of Afro Caribbean origin. Because of the higher risk of him being diagnosed with PCa I now insist he has regular psa checks. It annoys the hell out of me when people say Prostate Cancer is the best one to have........yep, try telling that to someone with advance PCa like yourself! Your outlook is brilliant and with your fighting spirit I'm sure you'll be around for a long time yet xx
User
Posted 11 Dec 2018 at 10:46

Thank you so much for your support. Your words mean a lot to me. I am a black man and you know the effects prostate cancer and black men, so its very important for your man to get tested regularly.

 
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