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12 years with Gleason 9

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User
Posted 04 Mar 2019 at 17:19

Hi Guys,

At risk of repeating myself I am a rare visitor to this website these days, but just been to see my Consultant who is happy with my PSA at a mere 0.5.  I won't bore you all with details of my treatment which those who are interested can pick up on the Profile, but here I am living proof that a Gleason 9, T3 diagnosis is survivable, and that is with the treatment options available 12 years ago.

I know I am lucky, and that far better men than me haven't survived, but hopefully those new diagnosed chaps who are a little downhearted may gain something from my story.

Wishing you all the best of luck.

:)

Dave

 

 

User
Posted 04 Mar 2019 at 17:19

Hi Guys,

At risk of repeating myself I am a rare visitor to this website these days, but just been to see my Consultant who is happy with my PSA at a mere 0.5.  I won't bore you all with details of my treatment which those who are interested can pick up on the Profile, but here I am living proof that a Gleason 9, T3 diagnosis is survivable, and that is with the treatment options available 12 years ago.

I know I am lucky, and that far better men than me haven't survived, but hopefully those new diagnosed chaps who are a little downhearted may gain something from my story.

Wishing you all the best of luck.

:)

Dave

 

 

User
Posted 05 Jun 2020 at 14:26

Hi Guys,

Just to let you know my PSA is down to 0.7 and it is now 13 years since diagnosis!

User
Posted 27 Jul 2019 at 18:31

I was 46 when diagnosed, T3b and Gleason 9. Still here 8 years later. On Zoladex, likely to start Bicalutamide in the next year as PSA rising. Still working full time as a teacher. Fell like I need to retire, but still enjoying life. The Christie hospital has been fantastic with me, and give me hope for many years to come.

User
Posted 07 Mar 2019 at 20:29
Congratulations Dave and Peter, both rapidly moving into TopGun's hall of fame - what a great advert for radiotherapy.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Mar 2019 at 20:28

I’m T3b and G9, age 46 at diagnosis.  Your message gives me great hope.  Thanks.

 

Ulsterman

User
Posted 04 Mar 2019 at 21:54
Well done Dave keep sitting on that perch :-)

Ray

User
Posted 07 Mar 2019 at 19:42

Thanks Dave - your message gives me hope. I was diagnosed with G9/T3 in April 2013 and have a low but rising PSA with no further treatment as yet following RP in 2013 and RT in 2016. Great to see that there can be a future. 

User
Posted 06 Mar 2020 at 19:40

I was looking forward to posting about 13 years with Gleason 9 and a steady post-treatment PSA, however they say 13 is an unlucky number, and my PSA has risen from 0.5 to 0.9 in six months!  Saw the Consultant today, he says it may not be anything to worry about, but he is putting me back on 3 monthly PSA tests to be on the safe side.  

I know with the +/- 0.1 level of accuracy it might not be so bad, but there is no getting away from it my PSA appears to have doubled, so I guess I will be a more frequent visitor to this website and will renew some old acquaintances, however you will forgive me for not being exactly ecstatic about that this evening.

:)

Dave 

User
Posted 06 Mar 2020 at 20:20

Completely understand your feelings Dave. That said, taken as a whole, your story is quite inspirational. All the best for the further tests.

User
Posted 07 Mar 2020 at 00:00

Dave, you’ve been our plimsol line over the last few years. David is also Gleason 9 Tb3, he was diagnosed in 2015. Currently on no meds... well, hypertension Pomi t and a few supplements. He’s been quite well healthy and continues to moan. I take moaning as a positive sign. 

We have a healthy diet, good life and hope for a future... David is 70 this year, I’m a girl of 65 ;-) 

This disease is a constant companion, good bad and otherwise. Our best wishes and positive thoughts to you.

Leila 

 

 

 

 

 

 

 

User
Posted 07 Mar 2020 at 00:06
Hi Dave,

Hope this is just a blip and your PSA will show a drop next time but naturally who will be anxious about the following couple or so PSA tests.

Barry
User
Posted 07 Mar 2020 at 06:19
Hi Dave

Tony is now in his 14th year, was told he had pc on 1st march 2006 at age 61 although he was actually diagnosed in 2005 but was not told, only realised when I was reading letters from hospital back from early days. Tony is on abbi now but PSA is down to 0.02 after recent RT.

I hope this is just a blip for you but if not there is plenty more treatment out there.

all the best barbara x

User
Posted 05 Jun 2020 at 16:26
Hey Dave lovely to hear from you mate. If ever we needed a true survivor story it’s now. All the very best to you

Regards Chris

User
Posted 05 Jun 2020 at 20:41

Excellent news. I'm G9 myself, I like hearing good news stories. 

Dave

User
Posted 06 Jun 2020 at 18:32

That’s good news for a newbie like me- diagnosed Gleason 5+4 about 12 weeks ago πŸ‘πŸ»

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User
Posted 04 Mar 2019 at 18:05

Excellent.  Your profile looks an interesting read, I'll look at it more later but on a quick view noticed your rising and falling psa which is something often written about.  All the best Peter

User
Posted 04 Mar 2019 at 18:40

Great news Dave .    Here's  keeping my fingers crossed for your next 12 years. 

 

Best wishes 

Ann

 

 

User
Posted 04 Mar 2019 at 20:10
Hi Dave and well done, Tony reached his 13 years since diagnosis on the 1st March but he has now become hormone resistant and is on chemo at the moment but doing well on it.

regards barbara

User
Posted 04 Mar 2019 at 20:28

I’m T3b and G9, age 46 at diagnosis.  Your message gives me great hope.  Thanks.

 

Ulsterman

User
Posted 04 Mar 2019 at 21:54
Well done Dave keep sitting on that perch :-)

Ray

User
Posted 05 Mar 2019 at 06:35

Good luck Dave

Barry

User
Posted 06 Mar 2019 at 20:34

Excellent news Dave. You and I were diagnosed at about the same time in 2007 , where has that time gone !!! . I too don't use this new site too often - i much prefered the previous one. I am delighted things are going well for you . My PSA has remained stable for all these years but i am going through another bout of very difficult " prostate area ache" - I've had it before and was told  that it might  be some form of infection or nerve damage. Getting it checked out shortly. I have never managed to lose the anxiety when it comes round to PSA results day and i know i never will !!!

All best wishes

Pete

User
Posted 07 Mar 2019 at 19:42

Thanks Dave - your message gives me hope. I was diagnosed with G9/T3 in April 2013 and have a low but rising PSA with no further treatment as yet following RP in 2013 and RT in 2016. Great to see that there can be a future. 

User
Posted 07 Mar 2019 at 20:29
Congratulations Dave and Peter, both rapidly moving into TopGun's hall of fame - what a great advert for radiotherapy.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Mar 2019 at 10:33

Great news Dave wish you well for the next 22.

John.

User
Posted 27 Jul 2019 at 18:31

I was 46 when diagnosed, T3b and Gleason 9. Still here 8 years later. On Zoladex, likely to start Bicalutamide in the next year as PSA rising. Still working full time as a teacher. Fell like I need to retire, but still enjoying life. The Christie hospital has been fantastic with me, and give me hope for many years to come.

User
Posted 28 Jul 2019 at 21:43

Fantastic news Dave and you have done us all a service by posting this. I feel this particularly at the moment as my PSA is edging up after RT. This gives us all a tonic.

User
Posted 06 Mar 2020 at 19:40

I was looking forward to posting about 13 years with Gleason 9 and a steady post-treatment PSA, however they say 13 is an unlucky number, and my PSA has risen from 0.5 to 0.9 in six months!  Saw the Consultant today, he says it may not be anything to worry about, but he is putting me back on 3 monthly PSA tests to be on the safe side.  

I know with the +/- 0.1 level of accuracy it might not be so bad, but there is no getting away from it my PSA appears to have doubled, so I guess I will be a more frequent visitor to this website and will renew some old acquaintances, however you will forgive me for not being exactly ecstatic about that this evening.

:)

Dave 

User
Posted 06 Mar 2020 at 20:20

Completely understand your feelings Dave. That said, taken as a whole, your story is quite inspirational. All the best for the further tests.

User
Posted 07 Mar 2020 at 00:00

Dave, you’ve been our plimsol line over the last few years. David is also Gleason 9 Tb3, he was diagnosed in 2015. Currently on no meds... well, hypertension Pomi t and a few supplements. He’s been quite well healthy and continues to moan. I take moaning as a positive sign. 

We have a healthy diet, good life and hope for a future... David is 70 this year, I’m a girl of 65 ;-) 

This disease is a constant companion, good bad and otherwise. Our best wishes and positive thoughts to you.

Leila 

 

 

 

 

 

 

 

User
Posted 07 Mar 2020 at 00:06
Hi Dave,

Hope this is just a blip and your PSA will show a drop next time but naturally who will be anxious about the following couple or so PSA tests.

Barry
User
Posted 07 Mar 2020 at 06:19
Hi Dave

Tony is now in his 14th year, was told he had pc on 1st march 2006 at age 61 although he was actually diagnosed in 2005 but was not told, only realised when I was reading letters from hospital back from early days. Tony is on abbi now but PSA is down to 0.02 after recent RT.

I hope this is just a blip for you but if not there is plenty more treatment out there.

all the best barbara x

User
Posted 07 Mar 2020 at 07:45

Thanks to all of you for your kind comments, I had quite forgotten how supportive and uplifting this group is, I had also forgotten about Pomi-T, I must get some in and dust down the Jane Plant recipe book.

:)

Dave

 

User
Posted 07 Mar 2020 at 11:47
Inspirational profile Dave, well worth a read for those who haven't seen it.

We'll done, hope PSA goes down again at next test.

User
Posted 07 Mar 2020 at 13:01

Wishing you well Dave fingers crossed for your next tests.

Regards John.

User
Posted 08 Mar 2020 at 17:38
Hi Dave

Fingers crossed its just a blip, had a few of those. If 13 bothers you next year just do 12+1 until 14 arrives.

Good luck

Ray

User
Posted 08 Mar 2020 at 18:02
Dave I’m so pleased for you. Hope this is just a tiny blip. Thanks for your kind help in the past mate .
User
Posted 09 Mar 2020 at 14:47
Well done dave

Thanks for sharing a positive report giving newer members of this select group hope for their futures

User
Posted 05 Jun 2020 at 14:26

Hi Guys,

Just to let you know my PSA is down to 0.7 and it is now 13 years since diagnosis!

User
Posted 05 Jun 2020 at 14:42

Brilliant news Dave, so good to read this. 

Leila

 

User
Posted 05 Jun 2020 at 16:26
Hey Dave lovely to hear from you mate. If ever we needed a true survivor story it’s now. All the very best to you

Regards Chris

User
Posted 05 Jun 2020 at 19:40

Excellent news Dave - raise a glass or two. Delighted for you. I follow your story with interest as we were both diagnosed at roughly the same time. Your humour, kindness and insights have always been a great tonic. Here's to many, many more years πŸ‘

User
Posted 05 Jun 2020 at 20:41

Excellent news. I'm G9 myself, I like hearing good news stories. 

Dave

User
Posted 05 Jun 2020 at 21:07

My husband has very recently been diagnosed 3+5, we are devastated to say the least. Had MRI on Monday and now waiting for the MDT next week. It’s helpful reading your story. Thanks for sharing 🌹

User
Posted 05 Jun 2020 at 22:33

Great news Dave. 

Ido4

User
Posted 06 Jun 2020 at 00:04

Fantastic news Dave, really happy for you.

Angex

User
Posted 06 Jun 2020 at 12:06
Nice one Dave, keep going well.

Mine is creeping up but ok.

Ray

User
Posted 06 Jun 2020 at 15:03

Great news Dave on your PSA. Only 5 years since my diagnosis, T3a etc.. (all in profile if anyone interested). My Feb PSA test was less than 0.1 for third time after it bounced around all over the place for 30 months.

Keep up the good work, its an inspiration to us all. 

 

Mike

User
Posted 06 Jun 2020 at 15:29

I read your profile, quite a story.    All the best. 

 

There is a Professor Karol Sikora who uses Twitter a lot, he's an Oncologist and wants to get treatment moving again.   He tweeted today:

'What am I hoping to achieve? The country is on its knees. If I can bring a little bit of hope into a few people's lives, that's good enough for me. Treating cancer teaches you that hope is a powerful motivator - I won't apologise to you for trying to help people through this.'

'My first patient at Hammersmith, a lady called Valerie, came to me as she was told nothing could be done - she had 2 small girls. I wasn't hopeful. We used an experimental drug and it worked, she never lost hope. She's still here 34 years later - I learnt a lot from Valerie.'

User
Posted 06 Jun 2020 at 17:10

Prof Karol Sikora opined when as one of the advisers to the Government that the chances of Abdelbaset al Megrahi, the convicted Lockerbie bomber (whose conviction is now in doubt) surviving more than 3 months with advanced PCa was most unlikely. Megrahi was released on compassionate grounds in August 2009 but lived to May 2012 so did well for a man considered to have only 3 months to live. There was talk at the time of the advisers giving the required opinion though!

Keep going Dave, you have many years yet!

Edited by member 06 Jun 2020 at 17:15  | Reason: Not specified

Barry
User
Posted 06 Jun 2020 at 18:32

That’s good news for a newbie like me- diagnosed Gleason 5+4 about 12 weeks ago πŸ‘πŸ»

User
Posted 06 Jun 2020 at 23:17

Always good to hear positive outcomes - thanks for sharing.  I was G9 N1, and latest PSA results are still <0.003.  Maybe I can hope that I will still be the same in ten years time as well!

User
Posted 07 Jun 2020 at 05:42

4 years since my G9 diagnosis.  I’m seriously expecting to be around at year 13 and beyond.  You give real hope.

ulsterman

User
Posted 07 Jun 2020 at 07:32

Well done Dave, Tony was told 14 years ago he had gleason 9 T3B but was actually diagnosed in 2005. but told on 2nd march 2006.   xxxx

 

regards Barbara.

User
Posted 07 Jun 2020 at 17:48

Great news Dave, hopefully see your next positive post in a year!

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 08 Jun 2020 at 21:36
Great news Dave.

You are such an inspiration to everyone.

I'm now at 5.5 years still on a Stampede Trial so there is good hope.

You keep Posting I love to hear your success.

Paul

User
Posted 10 Jun 2020 at 01:23

Keep going Dave,
I can’t get my PSA to go as low as yours yet but trying hard, it’s 1.2, I’m hoping that the Zoladex and Enzalutamide will keep it down this time, (14years and 5 months since Surgery.)

Chris.

PS, Kevin, IRUN, you are an inspiration to all of us.

Edited by member 10 Jun 2020 at 01:26  | Reason: Worth the edit.

 
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