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Still here 14 years after diagnosis

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User
Posted 28 May 2021 at 10:01

Hi Guys,

I thought I would let you know I am doing just fine 14 years after being diagnosed with Gleason 9, T3 N?  I have just had a chit chat with my consultant who is relaxed about my PSA rising to 1.6, doubling in over a year, so it seems I have still more years of life to look forward to.  

I don't suppose my profile is of much relevance to the newly diagnosed, as new treatments have been developed, however for those of you worried about a recent diagnosis, I am living proof that a G9 diagnosis is survivable.    

User
Posted 28 May 2021 at 10:01

Hi Guys,

I thought I would let you know I am doing just fine 14 years after being diagnosed with Gleason 9, T3 N?  I have just had a chit chat with my consultant who is relaxed about my PSA rising to 1.6, doubling in over a year, so it seems I have still more years of life to look forward to.  

I don't suppose my profile is of much relevance to the newly diagnosed, as new treatments have been developed, however for those of you worried about a recent diagnosis, I am living proof that a G9 diagnosis is survivable.    

User
Posted 01 Jan 2023 at 12:22

Hi Guys,  Happy New Year to everyone.

My news is good, PSA just before Christmas was up to 3.2 a doubling time of 18 months, in the words of my consultant '...indicates healthy non-cancerous regrowth of the prostate'.  So everything to look forward to, 16 years after a Gleason 9 diagnosis!

:)

Dave  

User
Posted 14 Sep 2023 at 20:04

Hi Guys,

Been to see my Oncologist today, he is happy that my PSA is still only 4.7, a doubling time of 15 months, so holding off HT for the time being.  Not bad, I have made my three score years and ten, 16 years after being diagnosed with Gleason 9.  

I don't know if any of my profile is of any relevance to the newly diagnosed as treatment options have improved no end.  The one thing I would advocate is the Jane Plant diet, I have followed it, to a greater or lesser extent ever since diagnosis, Green tea and black coffee are fine, I haven't drunk milk in 16 years. 

Edited by member 14 Sep 2023 at 20:07  | Reason: Not specified

User
Posted 28 May 2021 at 10:21

Thanks for posting Dave as it gives me a lot of comfort.  I was diagnosed with G9 August 2020 at the age of 50 and your post gives me hope for the future.

Regards

Jay

User
Posted 28 May 2021 at 19:50

Thats good news Dave ,
Really good to hear news like that.
My PSA is 0.04 thats after Chemo and three years of HT , I am now on a HT holiday

Stay safe 
Barry

User
Posted 02 Jun 2021 at 09:55

Thanks for the update Dave. 

As a worried G9 myself, 8 years on from DX, I found your message a ray of hope.

Andrew

User
Posted 02 Jun 2021 at 22:45

Almost 5 years since my G9 diagnosis at the age of 46.  Really pleased for you, Dave  and thank you for your message of hope.

User
Posted 02 Jun 2021 at 23:10
Good to learn you continue do much better than statistical odds given to you some years back Dave. Long may you continue to confound the experts.

From another 14 year from diagnose member.

Barry
User
Posted 28 May 2021 at 12:19
Thanks Dave. I love positivity!
User
Posted 28 May 2021 at 14:23

Great news , my OH was diagnosed 5 1/2 years ago Gleason 9 (4+5)at the age of 55 . so far so good after having early chemo and being on stampede trial he’s still undetectable. Here’s hoping we achieve the same plus more .
Best wishes
Debby

Edited by member 28 May 2021 at 14:25  | Reason: Not specified

User
Posted 28 May 2021 at 15:14

Big thumbs up Dave πŸ‘πŸ‘  Let's hope for the same longevity for all of us 😎

Good luck to everyone coping with the insidious big C

User
Posted 28 May 2021 at 15:40

So good to read positive G9 stories It’s such a boost to all our lovely G9 lads.

keep posting please. 

Thanks Dave.

Leila X

User
Posted 28 May 2021 at 19:37

Well done Dave, thanks for bringing this to our attention. That's a great profile write up.  If you don't mind I've copied an extract of the profile below as writing all that way back in 2008 seems great to me.  Let's hope there is more in the doctor's bag.  All the best, Peter

 

'keyhole surgery is not appropriate, he wants to open me up and take several lymph nodes for examination. If they are 100% free of cancer, then I have a chance of RT. But he emphasised that at gleason 9 this would have to be full blast maximum dose RT, with maximum side effects and a further 3 years of HT. Always assuming I live that long, because if I have cancer in the nodes he is suggesting that I have 3-5 years tops!

14-03-08 What a week. On Monday they phoned and said I was to go in on Saturday for my lymph node operation. On Wednesday I failed the pre-op my blood sugar was too high. Friday I saw my GP who said it might be diabetes, but that it might be 'something else' causing my kidneys to malfunction?

28/03/08 - Some GOOD NEWS at last! My diabetes is only borderline 8.8 (Not 16 like it was when tested at the Pre Op) So coming off the Jane Plant reliance on Rice Pasta and Potatoes seems to have worked. I am scheduled for another pre-op assessment and lymph node disection next week.

03/04/08 - hospital for PLND Op out on 5th.

09/04/08 - Great news today, my PLND results show lymph nodes clear which make me a candidate for RT on a 'curative; basis. After so many months of wondering, the 3-5 year prognoisis is suddenly 10, 15 or even more. I feel a little ashamed, so many of you who are equally deserving don't get this chance, so am resolved to do something worthwhile, some sort of voluntary work with my extra lease of life to help others less fortunate.

16-04-08 I saw my Oncologist today. Not all good news, they are to give me RT 55g in 20 sessions of 2.75 He reckons that, combined with another 3 years on Zoladex will give me a 55%-60% chance of a complete cure. So I am a long way from being out of the woods yet.'

 

Edited by member 28 May 2021 at 19:56  | Reason: Not specified

User
Posted 29 May 2021 at 10:10

Great news Dave .

 

regards Barbara x

User
Posted 02 Jun 2021 at 00:47
Thank you so much for your post Dave it has given me such hope for my Husband. He has been diagnosed with pretty much the same scores and I have been terrified as we keep being told his cancer is aggressive.

He goes for his planning appointment next week for his radiotherapy to start, hopefully soon.

May you continue you in good health for a very, very long time.

Barbara

User
Posted 02 Jun 2021 at 18:41
Awsome achievement, hopefully many more years ahead too

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 01 Jan 2023 at 14:27

great news hope to replicate that diagnosed too with Gleason 9  2 years in psa 0.01 happy new year too all πŸ‘ gaz 

User
Posted 01 Jan 2023 at 17:02

Great news Dave another G9 here. Five years post diagnosis. Posts like this, once every year or so are very reassuring.

 

Edited by member 02 Jan 2023 at 01:15  | Reason: Not specified

Dave

User
Posted 01 Jan 2023 at 17:28
Nice to hear from you Dave and great news for another year. Thanks for all your support years back.
User
Posted 01 Jan 2023 at 18:24

Brilliant news Dave,So good to read positive stories. David was G9 Tb3. He was diagnosed in September 2015. He’s doing well, had a heart attack in 2021, stent fitted. A few glitches, but we’re managing. 
Still growing our own veggies, lugging wood & coal in over winter and moaning about the blo@@dy weather. On HT and various meds. 
Enjoying life, I’m looking at holidays πŸ˜‰ He’s 73 in July. 

 

Leila 

User
Posted 01 Jan 2023 at 23:09

Great news which is of great encouragement to anyone with a G9 diagnosis.  I was G9, T3b in November 2016.  So well past the 6 year marker now.  Thanks, Dave, for sharing your news.

User
Posted 01 Jan 2023 at 23:16

Great news ulster man long may it continue happy new year gaz πŸ‘

User
Posted 02 Jan 2023 at 01:18

Wow 16 years. Such a positive story for others to read and provide hope. Long may this continue. Best wishes 

User
Posted 02 Jan 2023 at 14:58

Hi Dave.

Looking good long may it last, Happy New Year.

 

Regards john & Pat. 

User
Posted 02 Jan 2023 at 16:36
One of the joys of each new year is seeing you pop in to let us all know how you are! Happy 2023, Dave πŸ‘
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Jan 2023 at 22:55

What a wonderful positive post - gives us all hope. Long may it continue x

User
Posted 05 Jan 2023 at 07:02
Great news Dave and hope you have many more. Tony was well into his 16th year but due to the cancer and end stage kidney disease and a couple of really bad accidents didn't make it to 17. Hope to hear from you again this time next year.

regards Barbara x

User
Posted 05 Jan 2023 at 22:26

Gives us all some hope for the future,

thanks

dave

User
Posted 06 Jan 2023 at 18:13

Great to hear these positive outcomes in here. Gives us all hope for the future

Show Most Thanked Posts
User
Posted 28 May 2021 at 10:21

Thanks for posting Dave as it gives me a lot of comfort.  I was diagnosed with G9 August 2020 at the age of 50 and your post gives me hope for the future.

Regards

Jay

User
Posted 28 May 2021 at 12:19
Thanks Dave. I love positivity!
User
Posted 28 May 2021 at 14:23

Great news , my OH was diagnosed 5 1/2 years ago Gleason 9 (4+5)at the age of 55 . so far so good after having early chemo and being on stampede trial he’s still undetectable. Here’s hoping we achieve the same plus more .
Best wishes
Debby

Edited by member 28 May 2021 at 14:25  | Reason: Not specified

User
Posted 28 May 2021 at 15:14

Big thumbs up Dave πŸ‘πŸ‘  Let's hope for the same longevity for all of us 😎

Good luck to everyone coping with the insidious big C

User
Posted 28 May 2021 at 15:40

So good to read positive G9 stories It’s such a boost to all our lovely G9 lads.

keep posting please. 

Thanks Dave.

Leila X

User
Posted 28 May 2021 at 19:37

Well done Dave, thanks for bringing this to our attention. That's a great profile write up.  If you don't mind I've copied an extract of the profile below as writing all that way back in 2008 seems great to me.  Let's hope there is more in the doctor's bag.  All the best, Peter

 

'keyhole surgery is not appropriate, he wants to open me up and take several lymph nodes for examination. If they are 100% free of cancer, then I have a chance of RT. But he emphasised that at gleason 9 this would have to be full blast maximum dose RT, with maximum side effects and a further 3 years of HT. Always assuming I live that long, because if I have cancer in the nodes he is suggesting that I have 3-5 years tops!

14-03-08 What a week. On Monday they phoned and said I was to go in on Saturday for my lymph node operation. On Wednesday I failed the pre-op my blood sugar was too high. Friday I saw my GP who said it might be diabetes, but that it might be 'something else' causing my kidneys to malfunction?

28/03/08 - Some GOOD NEWS at last! My diabetes is only borderline 8.8 (Not 16 like it was when tested at the Pre Op) So coming off the Jane Plant reliance on Rice Pasta and Potatoes seems to have worked. I am scheduled for another pre-op assessment and lymph node disection next week.

03/04/08 - hospital for PLND Op out on 5th.

09/04/08 - Great news today, my PLND results show lymph nodes clear which make me a candidate for RT on a 'curative; basis. After so many months of wondering, the 3-5 year prognoisis is suddenly 10, 15 or even more. I feel a little ashamed, so many of you who are equally deserving don't get this chance, so am resolved to do something worthwhile, some sort of voluntary work with my extra lease of life to help others less fortunate.

16-04-08 I saw my Oncologist today. Not all good news, they are to give me RT 55g in 20 sessions of 2.75 He reckons that, combined with another 3 years on Zoladex will give me a 55%-60% chance of a complete cure. So I am a long way from being out of the woods yet.'

 

Edited by member 28 May 2021 at 19:56  | Reason: Not specified

User
Posted 28 May 2021 at 19:50

Thats good news Dave ,
Really good to hear news like that.
My PSA is 0.04 thats after Chemo and three years of HT , I am now on a HT holiday

Stay safe 
Barry

User
Posted 29 May 2021 at 10:10

Great news Dave .

 

regards Barbara x

User
Posted 02 Jun 2021 at 00:47
Thank you so much for your post Dave it has given me such hope for my Husband. He has been diagnosed with pretty much the same scores and I have been terrified as we keep being told his cancer is aggressive.

He goes for his planning appointment next week for his radiotherapy to start, hopefully soon.

May you continue you in good health for a very, very long time.

Barbara

User
Posted 02 Jun 2021 at 09:55

Thanks for the update Dave. 

As a worried G9 myself, 8 years on from DX, I found your message a ray of hope.

Andrew

User
Posted 02 Jun 2021 at 18:41
Awsome achievement, hopefully many more years ahead too

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 02 Jun 2021 at 22:45

Almost 5 years since my G9 diagnosis at the age of 46.  Really pleased for you, Dave  and thank you for your message of hope.

User
Posted 02 Jun 2021 at 23:10
Good to learn you continue do much better than statistical odds given to you some years back Dave. Long may you continue to confound the experts.

From another 14 year from diagnose member.

Barry
User
Posted 01 Jan 2023 at 12:22

Hi Guys,  Happy New Year to everyone.

My news is good, PSA just before Christmas was up to 3.2 a doubling time of 18 months, in the words of my consultant '...indicates healthy non-cancerous regrowth of the prostate'.  So everything to look forward to, 16 years after a Gleason 9 diagnosis!

:)

Dave  

User
Posted 01 Jan 2023 at 14:27

great news hope to replicate that diagnosed too with Gleason 9  2 years in psa 0.01 happy new year too all πŸ‘ gaz 

User
Posted 01 Jan 2023 at 17:02

Great news Dave another G9 here. Five years post diagnosis. Posts like this, once every year or so are very reassuring.

 

Edited by member 02 Jan 2023 at 01:15  | Reason: Not specified

Dave

User
Posted 01 Jan 2023 at 17:28
Nice to hear from you Dave and great news for another year. Thanks for all your support years back.
User
Posted 01 Jan 2023 at 18:24

Brilliant news Dave,So good to read positive stories. David was G9 Tb3. He was diagnosed in September 2015. He’s doing well, had a heart attack in 2021, stent fitted. A few glitches, but we’re managing. 
Still growing our own veggies, lugging wood & coal in over winter and moaning about the blo@@dy weather. On HT and various meds. 
Enjoying life, I’m looking at holidays πŸ˜‰ He’s 73 in July. 

 

Leila 

User
Posted 01 Jan 2023 at 23:09

Great news which is of great encouragement to anyone with a G9 diagnosis.  I was G9, T3b in November 2016.  So well past the 6 year marker now.  Thanks, Dave, for sharing your news.

User
Posted 01 Jan 2023 at 23:16

Great news ulster man long may it continue happy new year gaz πŸ‘

User
Posted 02 Jan 2023 at 01:18

Wow 16 years. Such a positive story for others to read and provide hope. Long may this continue. Best wishes 

User
Posted 02 Jan 2023 at 14:58

Hi Dave.

Looking good long may it last, Happy New Year.

 

Regards john & Pat. 

User
Posted 02 Jan 2023 at 16:36
One of the joys of each new year is seeing you pop in to let us all know how you are! Happy 2023, Dave πŸ‘
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Jan 2023 at 22:55

What a wonderful positive post - gives us all hope. Long may it continue x

User
Posted 05 Jan 2023 at 07:02
Great news Dave and hope you have many more. Tony was well into his 16th year but due to the cancer and end stage kidney disease and a couple of really bad accidents didn't make it to 17. Hope to hear from you again this time next year.

regards Barbara x

User
Posted 05 Jan 2023 at 22:26

Gives us all some hope for the future,

thanks

dave

User
Posted 06 Jan 2023 at 18:13

Great to hear these positive outcomes in here. Gives us all hope for the future

User
Posted 06 Jan 2023 at 18:36

Hi Dave, well done and good to read you're ok. I believe I'm ahead on survival years but then you were further down the road at diagnosis. You treatment may or not be relevant but the way your fought certainly is so keep on it view if you can.

Ray

Edited by member 06 Jan 2023 at 18:36  | Reason: Not specified

User
Posted 08 Jan 2023 at 16:02

Ray - Glad to hear you are also doing well.

 

Edited by member 08 Jan 2023 at 16:03  | Reason: Not specified

User
Posted 10 Jan 2023 at 09:25
Lovely to hear good news! I'm also G9, diagnosed 6 years ago aged 53. So far, PSA is still undetectable. Looking forward to adding the same in 10 years time!
User
Posted 14 Sep 2023 at 20:04

Hi Guys,

Been to see my Oncologist today, he is happy that my PSA is still only 4.7, a doubling time of 15 months, so holding off HT for the time being.  Not bad, I have made my three score years and ten, 16 years after being diagnosed with Gleason 9.  

I don't know if any of my profile is of any relevance to the newly diagnosed as treatment options have improved no end.  The one thing I would advocate is the Jane Plant diet, I have followed it, to a greater or lesser extent ever since diagnosis, Green tea and black coffee are fine, I haven't drunk milk in 16 years. 

Edited by member 14 Sep 2023 at 20:07  | Reason: Not specified

User
Posted 14 Sep 2023 at 21:03

Fantastic news Dave gives us all hope well done πŸ‘

User
Posted 15 Sep 2023 at 07:17

Really Pleased for you Dave, I’ve just read your profile and it really does give me hope for the future.

User
Posted 16 Sep 2023 at 08:04
Great news ,it’s nearly 8 yrs for my OH .He also was G9 spread to lymph nodes .it gives others hope ,Gary is still undetectable after having early chemo and going on stampede trial .

Best wishes

Debby

User
Posted 16 Sep 2023 at 10:43

Great news Dave.

Dave

User
Posted 16 Sep 2023 at 10:47

Great news Dave, long may it continue 

Best wishes, Arthur 

 
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