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The 10 year club

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User
Posted 08 Oct 2017 at 17:58
Just wondering how many of us there are who have passed the 10 year mark following diagnosis?

And who is still on treatment?

I'm on intermittent HT, last jab in this years session is November, then wait for the little b.... to raise the PSA again.


Chris.
User
Posted 09 Oct 2017 at 17:43

My dad is now 16 years post-RP having self funded what was in those days a trial operation that left the nerve bundles behind. The urologist (later to become known as our beloved Mr P) had just been to America to learn about it and I think dad paid £18000.

He received his official letter from the NHS saying he was in remission exactly 10 years after the op. The cancer recurred 2 years ago but he is currently refusing to discuss any treatment. He has agreed to scans nearer Christmas to see what's happening.

He is 80. He has since seen me graduate twice, his grandchilden graduate, 3 grandchildren married and 5 great-grandchildren arrive or arriving. He has buried two wives and his son. He is constantly on holiday or dancing ... 5 days a week! He is an awesome guy.

Edited by member 09 Oct 2017 at 17:46  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Oct 2017 at 01:55

Just over 10 years since diagnosis in my case. HT and RT which ended with RT in 2008 with salvage HIFU for failed RT in 2015. PSA slowly rising and I feel only a matter of time before HT will be recommended. Treatment has slowed advance of PCa.

Members on this site join because they or a family member or friend has been diagnosed with PCa. Initially, it is usually to obtain information and support. Often, after treatment we no longer hear from them, (hopefully they have been cured). The majority that stay do so with ongoing stages of PCa. I mention this as anybody though a non member may just looks into this forum having seen the number of our members who have passed away and those still being affected to various degrees and may not get a truly representative impression of PCa and the effectiveness of treatment. There would doubtless be more 10 year plus members if all those that felt their situation mean they no longer felt the the need to remain active members still posted.


h

Barry
User
Posted 08 Oct 2017 at 22:45

Do I qualify for the club Chris?


Well over 10 years since my first (and second) negative biopsies but gut instinct (plus slowly rising PSA) told me the little buggers were there all along and were jumping out of the way of the biopsy needles and it wasn't until 2015 that some of them got caught up in the HoLEP trawl net and the diagnosis was finally made.


Joking aside, I'm glad I made all the lifestyle and dietary changes that I first read about on these forum pages all those years ago and feel that the changes I made 10 years ago played a significant part in my being diagnosed a Gleason 6 when that diagnosis was finally made some 8 years later.


I'd like to thank all those guys, some of them unfortunately no longer with us, who inspired myself and many others too explore all avenues open to us and to keep asking those awkward questions at consultations.


 

Roger
User
Posted 09 Oct 2017 at 19:17
Thank you all for your responses, I think it may give encouragement to those joining here that it's not a life sentence, neither is it curable, but treatable as some of us are still on treatment.

If anyone else wants to reply, I'll be pleased to read your stories.

God Bless
Chris.
User
Posted 27 Oct 2017 at 18:43
Hi Chris,
I was diagnosed in 2007 when I was 49. This was 2 days before my lovely Mums funeral and when my wonderful Dad was severely ill. To say that I was ' blown out of the water ' would be a massive understatement. This site was instrumental in getting me back on an even keel. At diagnosis I was in total despair and people like Grant Martin ( Martini) with his kindness, understanding , patience and advice in spite of all of his own problems was an immense comfort to me. Also Rob , Allister( Alathays), Mark Keneally ( Spursspark) helped me enormously at a time when I was in need. The humour of Andy Ripley, George H, and Dave Kirkham amongst others has been tremendously inspiring. I remain in awe and humbled at so many people and their stories here. The reason for this post is to confirm Barry that as a 10 year survivor, who has been very lucky, I am sure that I am one amongst many others who have done very well since treatment who might not post so often or not at at all that might give a false perspective. There is always hope Stu
and things always continue to improve.

User
Posted 23 Nov 2017 at 20:38

Happy five years !! We're only on 2 but hopefully look forward to joining a 5 or 10 year club x
Best wishes
Debby

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User
Posted 08 Oct 2017 at 22:45

Do I qualify for the club Chris?


Well over 10 years since my first (and second) negative biopsies but gut instinct (plus slowly rising PSA) told me the little buggers were there all along and were jumping out of the way of the biopsy needles and it wasn't until 2015 that some of them got caught up in the HoLEP trawl net and the diagnosis was finally made.


Joking aside, I'm glad I made all the lifestyle and dietary changes that I first read about on these forum pages all those years ago and feel that the changes I made 10 years ago played a significant part in my being diagnosed a Gleason 6 when that diagnosis was finally made some 8 years later.


I'd like to thank all those guys, some of them unfortunately no longer with us, who inspired myself and many others too explore all avenues open to us and to keep asking those awkward questions at consultations.


 

Roger
User
Posted 09 Oct 2017 at 01:55

Just over 10 years since diagnosis in my case. HT and RT which ended with RT in 2008 with salvage HIFU for failed RT in 2015. PSA slowly rising and I feel only a matter of time before HT will be recommended. Treatment has slowed advance of PCa.

Members on this site join because they or a family member or friend has been diagnosed with PCa. Initially, it is usually to obtain information and support. Often, after treatment we no longer hear from them, (hopefully they have been cured). The majority that stay do so with ongoing stages of PCa. I mention this as anybody though a non member may just looks into this forum having seen the number of our members who have passed away and those still being affected to various degrees and may not get a truly representative impression of PCa and the effectiveness of treatment. There would doubtless be more 10 year plus members if all those that felt their situation mean they no longer felt the the need to remain active members still posted.


h

Barry
User
Posted 09 Oct 2017 at 15:55

Hi


 Tony is on his 11th year since diagnosis. april 2nd 2006. gleason 9 T3b. had radiotherapy and ht on and off ht since although went back on it in January due to big psa rise and now told he will be on it permanantly. also has CKD5 so has been getting prepared for Dialysis as cant have transplant due to active cancer. Still looks fit and well golf twice a week and the gymn 3 times a weelk. roll on the next ten years. xx


barbara

User
Posted 09 Oct 2017 at 17:05
I’m on eight years Chris
User
Posted 09 Oct 2017 at 17:25

Passed 10 years post-diagnosis last month, so I must be in the club. Suspect the PCa had been there for at least six months before that, perhaps a year, as opening PSA was 62 with Gleason 9. Perhaps if I'd caught it earlier, and my GP hadn't been so prejudiced against PSA testing, I'd be in Barbara's Tony's happier position. But we keep bu****Iing on...

AC

User
Posted 09 Oct 2017 at 17:38
My OH has passed the ten years mark afterRP and adjuvant radiotherapy he is currently on three monthly prostap, has stopped the daily bicalutamide, tried the enzalutamide with disastrous effects, currently on a drug free break for 3-4mnths but with daily steroids, however his PSA has now climbed to 6.6 so it means scans, CT and bone scans before the decision maybe trying abiraterone. But definitely a member of the ten year club
User
Posted 09 Oct 2017 at 17:43

My dad is now 16 years post-RP having self funded what was in those days a trial operation that left the nerve bundles behind. The urologist (later to become known as our beloved Mr P) had just been to America to learn about it and I think dad paid £18000.

He received his official letter from the NHS saying he was in remission exactly 10 years after the op. The cancer recurred 2 years ago but he is currently refusing to discuss any treatment. He has agreed to scans nearer Christmas to see what's happening.

He is 80. He has since seen me graduate twice, his grandchilden graduate, 3 grandchildren married and 5 great-grandchildren arrive or arriving. He has buried two wives and his son. He is constantly on holiday or dancing ... 5 days a week! He is an awesome guy.

Edited by member 09 Oct 2017 at 17:46  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Oct 2017 at 18:42
Thank you all. Gives me hope. Almost a year now since diagnosis. Working towards becoming a member of the 10 year club. If I make it, I'd be 56. Everything to live for.

Ulsterman
User
Posted 09 Oct 2017 at 19:17
Thank you all for your responses, I think it may give encouragement to those joining here that it's not a life sentence, neither is it curable, but treatable as some of us are still on treatment.

If anyone else wants to reply, I'll be pleased to read your stories.

God Bless
Chris.
User
Posted 09 Oct 2017 at 20:30

Hi Chris,

It's been 11 years for me, I'm T3b which isn't so good. However I was lucky to go the first 7 years without any treatment. I've been on HT for the past 4 years, but I've recently been informed that I'm now hormone resistant i.e. the Abiraterone is no longer working, which I've been taking for the past 6 months. My PSA has reached the dizzy heights of 5.42. It's spread to 2 lymph nodes at the base of my spine, I think they are going to have a go at zapping them, I'll no more later this week. I can't help but feel that there aren't many more years left, but one can live in hope.

Cheers
Stu

User
Posted 27 Oct 2017 at 18:43
Hi Chris,
I was diagnosed in 2007 when I was 49. This was 2 days before my lovely Mums funeral and when my wonderful Dad was severely ill. To say that I was ' blown out of the water ' would be a massive understatement. This site was instrumental in getting me back on an even keel. At diagnosis I was in total despair and people like Grant Martin ( Martini) with his kindness, understanding , patience and advice in spite of all of his own problems was an immense comfort to me. Also Rob , Allister( Alathays), Mark Keneally ( Spursspark) helped me enormously at a time when I was in need. The humour of Andy Ripley, George H, and Dave Kirkham amongst others has been tremendously inspiring. I remain in awe and humbled at so many people and their stories here. The reason for this post is to confirm Barry that as a 10 year survivor, who has been very lucky, I am sure that I am one amongst many others who have done very well since treatment who might not post so often or not at at all that might give a false perspective. There is always hope Stu
and things always continue to improve.

User
Posted 23 Nov 2017 at 19:45

Hi all, im halfway at 5 years today! Had my signing off appointment at Addenbrooke's cancelled a few days back so party will have to wait. PSA been at 0.02 since RP op so i consider myself one of the lucky ones. Look forward to posting here at 10 years!

Edited by member 23 Nov 2017 at 19:57  | Reason: Not specified

User
Posted 23 Nov 2017 at 20:38

Happy five years !! We're only on 2 but hopefully look forward to joining a 5 or 10 year club x
Best wishes
Debby

 
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