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5 years down the road, after being given 3 to 5 years

User
Posted 11 Jan 2024 at 18:39

Hi everyone,

a post to introduce myself and join the community.  When my dad passed (aged 82) with prostate cancer, I was 51 and I asked my GP at the time if I should have my PSA checked.  He dismissed the idea, saying I was too young to worry about it.  Hmm. 

Three years later, in December 2018, I decided to have a 'health MOT', to check on cholesterol levels, etc.  As an afterthought, I asked if my PSA level could be checked too.  I was lucky, or unlucky, depending how you look at it.  My PSA was 33, and the subsequent scans & biopsies showed advanced, inoperable Stage IV cancer with mets in my pelvis, spine and ribs.  I'd had no warning symptoms:  no pain, no blood in urine etc.  The only thing that I perhaps should have acted on was a slight increase in urgency when needing to pee, but I put that down to being in my mid-50s.

I was immediately put on Zoladex, and had 6 rounds of chemo (Docetaxel) followed by 18 sessions of radiotherapy targeting the primary in my prostate in Spring and Summer 2019. This kept my PSA well suppressed until early 2021, when my PSA started rising again. My consultant at The Christie in Manchester put me on Enzalutamide, which again kept my PSA in check for around 2 years.

In early 2023 I started having bad sciatic pains, and my PSA started rising.  A bone scan showed that the various treatments had shrunk every met apart from one on my L3 vertebra which seemed to be mounting a 'last stand', having grown significantly and interfering with the sciatic nerves.  Two targeted fractions of radiotherapy helped with the pain temporarily, but it has recurred. 

I was offered a vertebroplasty (injecting synthetic bone cement) to stabilise the vertebra and help relieve pain, but it didn't work as the tumour is sclerotic, and the surgeon couldn't get the needle in.  So I'm currently managing the pain with suitable medication and targeted exercise. 

Overall, I have a good QoL and I'm pretty happy to be still around and kicking 5 years after being given 3 to 5 years.  I retired nearly 3 years ago, giving me much more time to get out for walks with my family and get out on my bike, which suits me perfectly!

 

User
Posted 11 Jan 2024 at 21:19
Hi Craig , great encouraging post for many despite the sadness of it all. Like me you seem pretty stoic about it all. I’m 8 yrs on from a T4 diagnosis and spend all my time keeping busy , flying model planes and fishing with my 13 yr old boy. Keeping busy keeps me sane and both these hobbies are new to me. Keep going brother and don’t look back , just forwards.
User
Posted 11 Jan 2024 at 18:39

Hi everyone,

a post to introduce myself and join the community.  When my dad passed (aged 82) with prostate cancer, I was 51 and I asked my GP at the time if I should have my PSA checked.  He dismissed the idea, saying I was too young to worry about it.  Hmm. 

Three years later, in December 2018, I decided to have a 'health MOT', to check on cholesterol levels, etc.  As an afterthought, I asked if my PSA level could be checked too.  I was lucky, or unlucky, depending how you look at it.  My PSA was 33, and the subsequent scans & biopsies showed advanced, inoperable Stage IV cancer with mets in my pelvis, spine and ribs.  I'd had no warning symptoms:  no pain, no blood in urine etc.  The only thing that I perhaps should have acted on was a slight increase in urgency when needing to pee, but I put that down to being in my mid-50s.

I was immediately put on Zoladex, and had 6 rounds of chemo (Docetaxel) followed by 18 sessions of radiotherapy targeting the primary in my prostate in Spring and Summer 2019. This kept my PSA well suppressed until early 2021, when my PSA started rising again. My consultant at The Christie in Manchester put me on Enzalutamide, which again kept my PSA in check for around 2 years.

In early 2023 I started having bad sciatic pains, and my PSA started rising.  A bone scan showed that the various treatments had shrunk every met apart from one on my L3 vertebra which seemed to be mounting a 'last stand', having grown significantly and interfering with the sciatic nerves.  Two targeted fractions of radiotherapy helped with the pain temporarily, but it has recurred. 

I was offered a vertebroplasty (injecting synthetic bone cement) to stabilise the vertebra and help relieve pain, but it didn't work as the tumour is sclerotic, and the surgeon couldn't get the needle in.  So I'm currently managing the pain with suitable medication and targeted exercise. 

Overall, I have a good QoL and I'm pretty happy to be still around and kicking 5 years after being given 3 to 5 years.  I retired nearly 3 years ago, giving me much more time to get out for walks with my family and get out on my bike, which suits me perfectly!

 

User
Posted 22 Jul 2024 at 11:26

Latest update:  my PSA had been steadily rising from 7.3 in October '23, to 8.16 in February '24, to 16.4 in May.  This wasn't a big surprise as  a) I still have a prostate and b) the large met on my spine was still causing pain and presumably still growing.

So I've had MRI and CT scans to see what's going on, and will be seeing my consultant next week to get the current situation report, and to formulate a plan of action (e.g. trials? more chemo / radio? removing the compromised vertebra entirely?).   The good news is, I still feel well and the pain is managed effectively with the right balance of meds.  I'll report back after my appointment.  

User
Posted 11 Jan 2024 at 18:49

Good to hear you are doing ok despite all your problems keep on moving forward gaz 👍

User
Posted 11 Jan 2024 at 19:27

Great to see that therapies are working and you enjoying a good quality of life!
Wish you the best and thanks for your energetic post!

User
Posted 11 Jan 2024 at 19:33

Hi Craig,

Such a great, positive introductory post. I try to be as positive as I can about all things in life, which I hope, are reflected within my posts on here. But, genuinely, I find myself in awe of people like yourself. You obviously dont reflect on mistakes or what might have happends. You just deal with it.

So sorry that you are here, but for everyone else looking in from today onwards? Super happy that you are.

Love and thoughts brother.

 

Jamie.

 

User
Posted 11 Jan 2024 at 19:58

Hi Craig,

I echo what everyone else on here has said. Maybe it’s a pity you hadn’t found this forum earlier, as it’s a great source of information and inspiration, and your story just highlights how keeping a positive attitude is so important in dealing with this disease.

My bike is also my place of happiness, although I now have an ebike which allows me to go further and faster.

I wish you well for the future and look forward to following your story in the years to come.

Derek

User
Posted 11 Jan 2024 at 20:23

Hello Craig, nice meet you and thanks for posting.

You seem to have the courage, resilience  and drive of a TT racer.

Best of luck to you mate.

Adrian

User
Posted 11 Jan 2024 at 20:54

Hi Craig380,

So glad that you've proved the prognosis wrong and delighted that you're enjoying your life.  Long may it continue.

Best wishes,

JedSee.

User
Posted 13 Jan 2024 at 01:46
We had a member here pre-covid who claimed that he had had a number of bones removed, including a couple of vertebrae and a rib, I think. I am not completely sure that it was true but is it worth asking?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Jul 2024 at 12:14
Best of luck for your appointment Craig, good news you're keeping the pain under control.

Your positive mental attitude is shining through in your posts, full credit to you.

Keep going pal

User
Posted 22 Jul 2024 at 12:57

All the best Craig!

User
Posted 22 Jul 2024 at 19:26

Hi Craig,

I'm sure many of us benefit from the strength and resilence shown by you.

Best of luck mate.

Edited by member 22 Jul 2024 at 20:29  | Reason: Typo

User
Posted 30 Jul 2024 at 20:47

Had my meeting with my consultant today, and the PSA rise was due to more than the met on my spine:  I've now got a new 2.5cm diameter met on my liver, plus some new smaller mets in various lymph nodes.  Luckily, liver function has not yet been affected so that's a bit of better news.

So it's another 6 to 10 cycles of docetaxel chemo, after which we'll take stock.  Hopefully the chemo cycles will be as predictable (and manageable) this time as they were back in 2019. 

   

User
Posted 30 Jul 2024 at 21:07

Hi Craig.

I'm very sorry to hear of the spread, but I'm sure you'll stay as strong as ever. I hope your future treatment goes aswell as it can.

 

User
Posted 31 Jul 2024 at 20:13

CRAIG380,

Sorry to hear the bad news.  Hope they can whack it and maintain liver function too.

Best wishes,

JedSee.

 

User
Posted 31 Jul 2024 at 20:32

Hi Craig,

Shoulders properly dropped at reading this. Your strength still shines through though.

 

Much warmth lad.

 

Jamie.

User
Posted 31 Jul 2024 at 21:03
Hi Craig

A knock down for you but not out. You sound like your a strong, positive chap who will kick it back to touch 🤞

Wishing you all the best in you next round of treatment

Jac and Al

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User
Posted 11 Jan 2024 at 18:49

Good to hear you are doing ok despite all your problems keep on moving forward gaz 👍

User
Posted 11 Jan 2024 at 19:27

Great to see that therapies are working and you enjoying a good quality of life!
Wish you the best and thanks for your energetic post!

User
Posted 11 Jan 2024 at 19:33

Hi Craig,

Such a great, positive introductory post. I try to be as positive as I can about all things in life, which I hope, are reflected within my posts on here. But, genuinely, I find myself in awe of people like yourself. You obviously dont reflect on mistakes or what might have happends. You just deal with it.

So sorry that you are here, but for everyone else looking in from today onwards? Super happy that you are.

Love and thoughts brother.

 

Jamie.

 

User
Posted 11 Jan 2024 at 19:58

Hi Craig,

I echo what everyone else on here has said. Maybe it’s a pity you hadn’t found this forum earlier, as it’s a great source of information and inspiration, and your story just highlights how keeping a positive attitude is so important in dealing with this disease.

My bike is also my place of happiness, although I now have an ebike which allows me to go further and faster.

I wish you well for the future and look forward to following your story in the years to come.

Derek

User
Posted 11 Jan 2024 at 20:23

Hello Craig, nice meet you and thanks for posting.

You seem to have the courage, resilience  and drive of a TT racer.

Best of luck to you mate.

Adrian

User
Posted 11 Jan 2024 at 20:54

Hi Craig380,

So glad that you've proved the prognosis wrong and delighted that you're enjoying your life.  Long may it continue.

Best wishes,

JedSee.

User
Posted 11 Jan 2024 at 21:19
Hi Craig , great encouraging post for many despite the sadness of it all. Like me you seem pretty stoic about it all. I’m 8 yrs on from a T4 diagnosis and spend all my time keeping busy , flying model planes and fishing with my 13 yr old boy. Keeping busy keeps me sane and both these hobbies are new to me. Keep going brother and don’t look back , just forwards.
User
Posted 13 Jan 2024 at 01:46
We had a member here pre-covid who claimed that he had had a number of bones removed, including a couple of vertebrae and a rib, I think. I am not completely sure that it was true but is it worth asking?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Jan 2024 at 11:42

Originally Posted by: Online Community Member
We had a member here pre-covid who claimed that he had had a number of bones removed, including a couple of vertebrae and a rib, I think. I am not completely sure that it was true but is it worth asking?

Interesting!  I have been offered an instrumental decompression around my affected L3 vertebra with the aim of alleviating the sciatic pain, but I was warned of an elevated risk of complications because I've had two fractions of radiotherapy at that site.  So I'm currently managing with pain meds and exercise.  But I may ask the question to see what the response is!

User
Posted 22 Jul 2024 at 11:26

Latest update:  my PSA had been steadily rising from 7.3 in October '23, to 8.16 in February '24, to 16.4 in May.  This wasn't a big surprise as  a) I still have a prostate and b) the large met on my spine was still causing pain and presumably still growing.

So I've had MRI and CT scans to see what's going on, and will be seeing my consultant next week to get the current situation report, and to formulate a plan of action (e.g. trials? more chemo / radio? removing the compromised vertebra entirely?).   The good news is, I still feel well and the pain is managed effectively with the right balance of meds.  I'll report back after my appointment.  

User
Posted 22 Jul 2024 at 12:14
Best of luck for your appointment Craig, good news you're keeping the pain under control.

Your positive mental attitude is shining through in your posts, full credit to you.

Keep going pal

User
Posted 22 Jul 2024 at 12:57

All the best Craig!

User
Posted 22 Jul 2024 at 19:26

Hi Craig,

I'm sure many of us benefit from the strength and resilence shown by you.

Best of luck mate.

Edited by member 22 Jul 2024 at 20:29  | Reason: Typo

User
Posted 30 Jul 2024 at 20:47

Had my meeting with my consultant today, and the PSA rise was due to more than the met on my spine:  I've now got a new 2.5cm diameter met on my liver, plus some new smaller mets in various lymph nodes.  Luckily, liver function has not yet been affected so that's a bit of better news.

So it's another 6 to 10 cycles of docetaxel chemo, after which we'll take stock.  Hopefully the chemo cycles will be as predictable (and manageable) this time as they were back in 2019. 

   

User
Posted 30 Jul 2024 at 21:07

Hi Craig.

I'm very sorry to hear of the spread, but I'm sure you'll stay as strong as ever. I hope your future treatment goes aswell as it can.

 

User
Posted 31 Jul 2024 at 20:13

CRAIG380,

Sorry to hear the bad news.  Hope they can whack it and maintain liver function too.

Best wishes,

JedSee.

 

User
Posted 31 Jul 2024 at 20:32

Hi Craig,

Shoulders properly dropped at reading this. Your strength still shines through though.

 

Much warmth lad.

 

Jamie.

User
Posted 31 Jul 2024 at 21:03
Hi Craig

A knock down for you but not out. You sound like your a strong, positive chap who will kick it back to touch 🤞

Wishing you all the best in you next round of treatment

Jac and Al

 
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