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To give hope to others 10 years down the line

User
Posted 18 Mar 2026 at 14:48

If you read my profile you will see that in 2016 I was diagnosed with superficial bladder and prostate cancer .Four years of Active surveilance followed by prostectomy in 2020 my Gleason score ended  up 4 ,3, 5 ,,stagec3b PSA only went down to 17 after prostectomy, salvage RT in 2021 ,ADT and Enzalutimide right after failed prostectomy.

Now 10 years later my bladder cancer has been cured 8 years clear and my PSA is undetectable and has been since I started ADT and Enzalutimide in May 2020,my PSA dropped like a stone to undetectable within one month .I  have been very lucky and am described as a ultra super responder to the treatment .I remain on ADT and Enzalutimide small price to pay as the cancer was considered aggressive .and had spread to local.lymph nodes I cannot praise the Oncology consultant enough at our trust, which is a University teaching hospital ,for giving me Enzalutimide as a first line treatment because of COVID  fairly expermental at the time .There are many new wonderful treatments coming down the line ,our hospital is the first in the UK to be trialing a new form of immunotherapy for diffucult to trest adcanced Prostate Cancer , which is proving to be very promising there are new combinations of drugs being trialed and AI is coming up with new treatment regimes all the time .There is always hope and the treatment for advanced Prostate cancer has greatly improved since I was first diagnosed ..The intention is that advanced Prostate cancer will eventually be treated as a chronic illness and not life limiting which will be wondetful .Remain positive, be your own advocate for treatment and live each day to the fullest .

 

User
Posted 18 Mar 2026 at 14:48

If you read my profile you will see that in 2016 I was diagnosed with superficial bladder and prostate cancer .Four years of Active surveilance followed by prostectomy in 2020 my Gleason score ended  up 4 ,3, 5 ,,stagec3b PSA only went down to 17 after prostectomy, salvage RT in 2021 ,ADT and Enzalutimide right after failed prostectomy.

Now 10 years later my bladder cancer has been cured 8 years clear and my PSA is undetectable and has been since I started ADT and Enzalutimide in May 2020,my PSA dropped like a stone to undetectable within one month .I  have been very lucky and am described as a ultra super responder to the treatment .I remain on ADT and Enzalutimide small price to pay as the cancer was considered aggressive .and had spread to local.lymph nodes I cannot praise the Oncology consultant enough at our trust, which is a University teaching hospital ,for giving me Enzalutimide as a first line treatment because of COVID  fairly expermental at the time .There are many new wonderful treatments coming down the line ,our hospital is the first in the UK to be trialing a new form of immunotherapy for diffucult to trest adcanced Prostate Cancer , which is proving to be very promising there are new combinations of drugs being trialed and AI is coming up with new treatment regimes all the time .There is always hope and the treatment for advanced Prostate cancer has greatly improved since I was first diagnosed ..The intention is that advanced Prostate cancer will eventually be treated as a chronic illness and not life limiting which will be wondetful .Remain positive, be your own advocate for treatment and live each day to the fullest .

 

User
Posted 18 Mar 2026 at 17:38

Great to hear success stories, my husband was diagnosed late 2015 psa 23 Gleason 4+5 . It had spread to lymph nodes so incurable.
His treatment then was early chemo and prosap then onto abi and Enzo combo on the stampede trial . His PSA dropped to undetectable pretty quickly and has stayed there ever since . The Enzo was stopped but he’s still on the abi and prostap with steroids.
He was 55 at the time and we thought 3/5 yrs max .
To everyone starting this journey ,it doesn’t have to be a death sentence. Keep strong .
Best wishes to everyone who is on this journey.
Debby .

Edited by member 20 Mar 2026 at 12:09  | Reason: Not specified

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User
Posted 18 Mar 2026 at 17:38

Great to hear success stories, my husband was diagnosed late 2015 psa 23 Gleason 4+5 . It had spread to lymph nodes so incurable.
His treatment then was early chemo and prosap then onto abi and Enzo combo on the stampede trial . His PSA dropped to undetectable pretty quickly and has stayed there ever since . The Enzo was stopped but he’s still on the abi and prostap with steroids.
He was 55 at the time and we thought 3/5 yrs max .
To everyone starting this journey ,it doesn’t have to be a death sentence. Keep strong .
Best wishes to everyone who is on this journey.
Debby .

Edited by member 20 Mar 2026 at 12:09  | Reason: Not specified

User
Posted 20 Mar 2026 at 10:48

Thanks for these messages, very powerful indeed, 10 and 11 years respectively with incurable disease.

Keep fighting the good fight!

User
Posted 20 Mar 2026 at 15:03
Thank you for your encouragement.
User
Posted 20 Mar 2026 at 15:13

My husband was diagnosed September 2015 Gleason 9 Tb3 PSA 8.5 

He then  three years later

had further spread to lymph nodes and went  back to Prostap three monthly injections. He was offered apalutamide but declined.

He decided to stay on the Prostap and follows  an alternative therapy regime, not agreed with the NHS oncologist, his PSA dropped back to < 0.1 and it has remained there. 
He has decided to have a break from the Prostap as his PSA has been undetectable consistent, and maintain the alternative regime. 

He is 75 had a heart attack five years ago and had one stent, has mild angina, and occasional palpitations.

Q.OL good still growing veggies,singing, playing a writing music. 
Yes, lads there is hope after Gleason 9 thankfully. 

Leila 

 

Edited by member 20 Mar 2026 at 15:36  | Reason: Not specified

 
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