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Still here 14 years after diagnosis

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 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 👍👍  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
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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 👍👍  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
 
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