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Very high initial PSA score

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User
Posted 14 Feb 2023 at 09:07

After receiving the news my PSA was just over 500 and then having had my scans last week I am now waiting for my results should be 16th Feb. I know a 500 score means that I will have Prostate Cancer but I would just like to know if anybody has any a advice or experience in dealing with a similar starting point. Thanks. 


 


 


 

User
Posted 14 Feb 2023 at 22:23

Hi,


I was diagnosed with PCa in January 2013, I had biopsies etc in the previous December. My PSA was 408.  I had hormone therapy, a TURP procedure so I could pee freely followed by radio therapy.


See my profile for more of my journey with PCa, unfortunately I can’t update it as I have an older iOS.


My latest appointment with the oncologist in December 2022 was 0.07. I haven’t had HT since July 2020


I hope this is an encouragement to you.


All the best, Arthur 

User
Posted 14 Feb 2023 at 20:32

Hi ,My partners psa was 675 three years ago 


with no spread to lymph’s or bones on diagnosis but had spread to bladder but was all removed surgically .Diagnosed with locally advanced Prostate Cancer


after chemo ,radiotherapy and three years of hormone therapy psa is less than 0.03 onco said undetectable so in June are going to stop hormone therapy and see what happens Obviously we are fully aware of the risk of micro mets and may have to go back on it at some point but Barry is in  a far better place than he was three years ago when onco said Ht for life and wouldn’t entertain Barry coming off of it .


Best wishes and good luck 
Carolyn 


 

Edited by member 14 Feb 2023 at 20:54  | Reason: Not specified

User
Posted 14 Feb 2023 at 21:54

Hi 


I was mis diagnosed 4 months earlier to diagnosis with an inigual hernia by my GP it was wasn't until I was admitted to hospital with an acute kidney injury that my PSA was taken,I am in the process of an official complaint with NHS England which I am still waiting for a response after 8 months,I haven't spoken to my gp face to face since.


Regards Phil 

User
Posted 20 Feb 2023 at 12:39

My PSA was 215 upon diagnosis, with spread to bones and Lymphs.


1 month of firmagon later it was 3.6, another month it was 1.4, the next month it was >0.2 and it has stayed that way ever since (exactly 12 months).


Everyone is different obviously, but PSA can be gotten control of very quickly with HT.


 

User
Posted 14 Feb 2023 at 09:07

After receiving the news my PSA was just over 500 and then having had my scans last week I am now waiting for my results should be 16th Feb. I know a 500 score means that I will have Prostate Cancer but I would just like to know if anybody has any a advice or experience in dealing with a similar starting point. Thanks. 


 


 


 

User
Posted 14 Feb 2023 at 14:52

Hi Rich,


I agree with what Elaine says. My PSA at diagnosis was 36 which I thought was very scary until I found out that many have PSAa in he 100’s. I have locally advanced Prostate Cancer T3b N0M0 which means it’s spread to the seminal vesicles only. Currently on HT and awaiting RT.


The waiting is definitely the worst but you’ll get a lot of help on here. Don’t suffer in silence, Ive found that the more I talk to people, the more I am able to cope,  and this site and my local Maggies Centre have been fantastic help to me in coming to terms with this disease. Also the Specialist Nurses you can phone on this site are absolutely fantastic, so compassionate, knowledgeable and helpful…don’t be afraid to give them a ring. I’ve done it twice and got the same guy(a Glaswegian) who was extremely helpful.


good luck with your journey.


Derek

User
Posted 14 Feb 2023 at 17:41
Your PSA is high enough for the urologist to know that you have prostate cancer and that there is a good chance the cancer has spread, to bones or lymph nodes, for example. The scans will provide more information and sometimes, when PSA is this high, a decision is made not to do a biopsy. Having said all that, we did see someone on here recently with a PSA over 300 and no evidence of spread so the news might be better than you expect.

To put your PSA in context, the highest we have ever seen on here was 13,000!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Feb 2023 at 17:57

Hi Rich 


I had a starting PSA of just over 2100 also had kidney failure,after a few months of treatment and a double nephrostomy my psa dropped like I lead weight to about 3.5,my specialist nurse at the time you'll find that the higher you are the quicker it will drop,I'm about 10 months into my journey and psa is hoovering around 0.8,please read my profile for a run down,hope this helps.


Regards Phil 

User
Posted 14 Feb 2023 at 19:03

Hi Rich,


My PSA was over 1000 when first measured a year and a half ago.  Began chemo shortly after and PSA dropped quickly.  Anytime you have wait on scans or blood work can be nerve wracking, but we’re all different and treatment has advanced so much.  Keep your head up.


Best,


Ed

User
Posted 14 Feb 2023 at 21:17
Brilliant post, Carolyn - what a great outcome!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Feb 2023 at 08:18

Hi No one really said apart from they think Barry had it for quite a while.


He had issues peeing for probably nearly a year and didn’t do anything about it ,despite me keep on at him to go to the doctors.He kept putting it down to getting older .Only when he started peeing blood he did something about it.That was because it had spread to the neck of the bladder .🤦‍♀️

User
Posted 15 Feb 2023 at 14:29
Hi Rich

My experience with all of this is also fairly new, with my first indication from an MRI scan in Nov 22 and then 2 follow up blood tests with PSA of 990 and 981. Since I had mets they scheduled me in for a biopsy of a lymph node which was pretty painless (local anaesthetic with me lying on my front and the needle going in my lower back), and a nuclear bone scan which was an easy procedure.

I was put on anti-testosterone pills straight away in prep for moving to a Zoladex implant in the belly 3 weeks later. By the time I was in for my first IV chemo in Jan my PSA had dropped to 218 just from the pills and implant. My latest reading is 62 from a week ago after 1 chemo round and constant Darolutamide. I have my 2nd IV chemo tomorrow.

Everyone will have different priorities and experiences, but if I could go back and tell myself some things at the beginning I would have asked for surgical bilateral subcapsular orchidectomy (a type of castration) instead of the implant, because Zoladex for me changes my taste, gives me some night sweats, dry mouth and makes me pee every 2-3 hours each night, and I would need to stay on that for potentially years. Of course that's easy to say now I know about the side effects, and I am looking to do the surgery after chemo now when my body can cope with it (sometime in May/June probably).

Rob
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User
Posted 14 Feb 2023 at 13:30

Hi Rich,


I’m sorry I’m not able to offer any advice but there are definitely many who will be able to. I do know that I’ve seen many posts on here with men who have high PSA that are doing really well. I guess this is the worst part waiting for all the results and knowing exactly how things are. So much that can be done and many treatment options available.


Wishing you all the very best.


Elaine

User
Posted 14 Feb 2023 at 14:18

Thank you for kind words. The waiting is definitely the worst time. 

User
Posted 14 Feb 2023 at 14:52

Hi Rich,


I agree with what Elaine says. My PSA at diagnosis was 36 which I thought was very scary until I found out that many have PSAa in he 100’s. I have locally advanced Prostate Cancer T3b N0M0 which means it’s spread to the seminal vesicles only. Currently on HT and awaiting RT.


The waiting is definitely the worst but you’ll get a lot of help on here. Don’t suffer in silence, Ive found that the more I talk to people, the more I am able to cope,  and this site and my local Maggies Centre have been fantastic help to me in coming to terms with this disease. Also the Specialist Nurses you can phone on this site are absolutely fantastic, so compassionate, knowledgeable and helpful…don’t be afraid to give them a ring. I’ve done it twice and got the same guy(a Glaswegian) who was extremely helpful.


good luck with your journey.


Derek

User
Posted 14 Feb 2023 at 17:41
Your PSA is high enough for the urologist to know that you have prostate cancer and that there is a good chance the cancer has spread, to bones or lymph nodes, for example. The scans will provide more information and sometimes, when PSA is this high, a decision is made not to do a biopsy. Having said all that, we did see someone on here recently with a PSA over 300 and no evidence of spread so the news might be better than you expect.

To put your PSA in context, the highest we have ever seen on here was 13,000!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Feb 2023 at 17:57

Hi Rich 


I had a starting PSA of just over 2100 also had kidney failure,after a few months of treatment and a double nephrostomy my psa dropped like I lead weight to about 3.5,my specialist nurse at the time you'll find that the higher you are the quicker it will drop,I'm about 10 months into my journey and psa is hoovering around 0.8,please read my profile for a run down,hope this helps.


Regards Phil 

User
Posted 14 Feb 2023 at 19:03

Hi Rich,


My PSA was over 1000 when first measured a year and a half ago.  Began chemo shortly after and PSA dropped quickly.  Anytime you have wait on scans or blood work can be nerve wracking, but we’re all different and treatment has advanced so much.  Keep your head up.


Best,


Ed

User
Posted 14 Feb 2023 at 20:32

Hi ,My partners psa was 675 three years ago 


with no spread to lymph’s or bones on diagnosis but had spread to bladder but was all removed surgically .Diagnosed with locally advanced Prostate Cancer


after chemo ,radiotherapy and three years of hormone therapy psa is less than 0.03 onco said undetectable so in June are going to stop hormone therapy and see what happens Obviously we are fully aware of the risk of micro mets and may have to go back on it at some point but Barry is in  a far better place than he was three years ago when onco said Ht for life and wouldn’t entertain Barry coming off of it .


Best wishes and good luck 
Carolyn 


 

Edited by member 14 Feb 2023 at 20:54  | Reason: Not specified

User
Posted 14 Feb 2023 at 21:17
Brilliant post, Carolyn - what a great outcome!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 14 Feb 2023 at 21:38

Hi thanks for your message and it’s great that you seem to be getting through the worst. Do you mind if I ask, did you find out why the initial PSA level was so high? Thanks 

User
Posted 14 Feb 2023 at 21:54

Hi 


I was mis diagnosed 4 months earlier to diagnosis with an inigual hernia by my GP it was wasn't until I was admitted to hospital with an acute kidney injury that my PSA was taken,I am in the process of an official complaint with NHS England which I am still waiting for a response after 8 months,I haven't spoken to my gp face to face since.


Regards Phil 

User
Posted 14 Feb 2023 at 22:23

Hi,


I was diagnosed with PCa in January 2013, I had biopsies etc in the previous December. My PSA was 408.  I had hormone therapy, a TURP procedure so I could pee freely followed by radio therapy.


See my profile for more of my journey with PCa, unfortunately I can’t update it as I have an older iOS.


My latest appointment with the oncologist in December 2022 was 0.07. I haven’t had HT since July 2020


I hope this is an encouragement to you.


All the best, Arthur 

User
Posted 15 Feb 2023 at 08:18

Hi No one really said apart from they think Barry had it for quite a while.


He had issues peeing for probably nearly a year and didn’t do anything about it ,despite me keep on at him to go to the doctors.He kept putting it down to getting older .Only when he started peeing blood he did something about it.That was because it had spread to the neck of the bladder .🤦‍♀️

User
Posted 15 Feb 2023 at 14:29
Hi Rich

My experience with all of this is also fairly new, with my first indication from an MRI scan in Nov 22 and then 2 follow up blood tests with PSA of 990 and 981. Since I had mets they scheduled me in for a biopsy of a lymph node which was pretty painless (local anaesthetic with me lying on my front and the needle going in my lower back), and a nuclear bone scan which was an easy procedure.

I was put on anti-testosterone pills straight away in prep for moving to a Zoladex implant in the belly 3 weeks later. By the time I was in for my first IV chemo in Jan my PSA had dropped to 218 just from the pills and implant. My latest reading is 62 from a week ago after 1 chemo round and constant Darolutamide. I have my 2nd IV chemo tomorrow.

Everyone will have different priorities and experiences, but if I could go back and tell myself some things at the beginning I would have asked for surgical bilateral subcapsular orchidectomy (a type of castration) instead of the implant, because Zoladex for me changes my taste, gives me some night sweats, dry mouth and makes me pee every 2-3 hours each night, and I would need to stay on that for potentially years. Of course that's easy to say now I know about the side effects, and I am looking to do the surgery after chemo now when my body can cope with it (sometime in May/June probably).

Rob
User
Posted 15 Feb 2023 at 18:22
Amarokada, the reason that orchiectomy is now rare in the UK is because it has many of the same side effects as HT but is irreversible if the man finds the side effects intolerable.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Feb 2023 at 19:47

I also wonder how you’d feel if you had an orchiectomy and some new wonder treatment came along which meant you could come off HT safely and get your libido and sex life back?

User
Posted 16 Feb 2023 at 12:37
Indeed, these would be important issues for others and I don't mean to make light of the decision of a orchiectomy, but in my case my sex life was already broken from a bladder neck incision I had done a few years back, so I'm not losing as much as most others would.

I have asked on here if anyone has had experience of this operation and life afterwards, but so far haven't seen a reply, most likely because it is so rare now. Having spoken to the Urologist though I'm mostly happy it will suit me fine.
User
Posted 16 Feb 2023 at 21:23

Have you ever questioned the assessment the urologist did in terms of you BNI previously? Did they do a thorough enough assessment, if not I would be asking some serious questions of the urologist involved...I know it won't help your situation but may save another patient who sees this 'surgeon' in the future.

User
Posted 16 Feb 2023 at 23:40

Originally Posted by: Online Community Member
Indeed, these would be important issues for others and I don't mean to make light of the decision of a orchiectomy, but in my case my sex life was already broken from a bladder neck incision I had done a few years back, so I'm not losing as much as most others would.

I have asked on here if anyone has had experience of this operation and life afterwards, but so far haven't seen a reply, most likely because it is so rare now. Having spoken to the Urologist though I'm mostly happy it will suit me fine.


We do have a couple of active members who have had orchiectomy so hopefully they will see your post at some point and comment. You could also use the (clunky) search function to find previous threads on this. 


We also had a marvellous member, Alex, who lived well for many years after orchiectomy. It is not a completely crazy thing to do!  

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Feb 2023 at 12:39

My PSA was 215 upon diagnosis, with spread to bones and Lymphs.


1 month of firmagon later it was 3.6, another month it was 1.4, the next month it was >0.2 and it has stayed that way ever since (exactly 12 months).


Everyone is different obviously, but PSA can be gotten control of very quickly with HT.


 

User
Posted 06 Jan 2024 at 12:34

Hi Caz P I was wondering how you are going on did you stop having hormone treatment in June. 

User
Posted 06 Jan 2024 at 13:00

That is great to hear and long may it continue. 

 
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