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PSA 239

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User
Posted 04 Mar 2024 at 13:43

Hi, 

I’m wondering if anyone here has had a very high PSA on diagnosis? 

My husband has just been diagnosed. He has no symptoms at all. But his PSA is 239. 

He’s had MRI/biopsy/bone scan/PSMA scan. He’s been told T3bN0M0.

They’ve just started him on HT while we’re waiting for first appointment with oncologist.

 

Almost every post and bio I’ve read so far (apart from JayKay) say their PSA level was well under 100 on diagnosis, and lots where it was under 10. 

Is there anyone here who started their journey with a very high PSA?

 

Edited by member 09 Mar 2024 at 09:34  | Reason: Not specified

User
Posted 04 Mar 2024 at 19:59

lola I can't really help but just to say I've been where you are. being all consumed by it . it  does get better when u know more and it gets easier   .my partner is the same t3b m0 no and his psa was 78.8. Try not to Google easier said then done I know I was terrible for it at the beginning and working myself up. feel free to message me if u want to talk . 

User
Posted 04 Mar 2024 at 14:45

Hi Lola,

Sorry you’ve found yourself a member of our club but welcome anyway, you’ve done the right thing by joining!

I’m T3BN0M0 as well but my PSA was 36. There are people on here who’s PSA at diagnosis was much higher than your husband, His staging suggests that it has spread to the Seminal Vesicles (T3B) but there was nothing detected in the lymph nodes or bones.

I would speak to your CNS(Clinical Nurse Specialist) for clarification and some reassurance which it sounds like you need, and difficult as it is try not to overthink things until you’ve spoken to the CNS and Oncologist, hopefully you’ll not have to wait too long for that.

In the meantime do lots of nice things together, keep active and busy to help keep your mind off it.

All the best,

Derek

User
Posted 04 Mar 2024 at 16:01

Originally Posted by: Online Community Member

 However it might be a good idea to push for a PSMA PET which is the most accurate means of identifying any spread to nodes or bones.

Hi Chris,

I think the gentleman has had such a scan, which appears all clear. However the consultant still fears mets.

https://community.prostatecanceruk.org/default.aspx?g=posts&m=292973#post292973

User
Posted 04 Mar 2024 at 13:43

Hi, 

I’m wondering if anyone here has had a very high PSA on diagnosis? 

My husband has just been diagnosed. He has no symptoms at all. But his PSA is 239. 

He’s had MRI/biopsy/bone scan/PSMA scan. He’s been told T3bN0M0.

They’ve just started him on HT while we’re waiting for first appointment with oncologist.

 

Almost every post and bio I’ve read so far (apart from JayKay) say their PSA level was well under 100 on diagnosis, and lots where it was under 10. 

Is there anyone here who started their journey with a very high PSA?

 

Edited by member 09 Mar 2024 at 09:34  | Reason: Not specified

User
Posted 04 Mar 2024 at 15:51

Hi Lola. I was also T3bN0M0 on diagnosis and like Derek I had a PSA of 36. I wouldn't read too much into the PSA reading. They are extremely variable and don't have any reliable correlation to the extent of the cancer. However it might be a good idea to push for a PSMA PET which is the most accurate means of identifying any spread to nodes or bones.

User
Posted 05 Mar 2024 at 19:57

Hi 

I know exactly how you feel.My partner’s Psa was 676 ! in 2020 .

Feel free to message me if you want to chat 

User
Posted 05 Mar 2024 at 23:40
When you first join the forum and see people diagnosed with a PSA of 3 or 10 or 20, a score of 239 does sound terrifying. But, just to put it in context, we have had men here whose PSA was in the thousands - the highest was 13,000 and the highest ever recorded by my husband's urologist was 160,000. Try not to panic - the hormone treatment should bring the reading down very quickly.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Mar 2024 at 09:10
Hi Lola! My OH was diagnosed end of 2022 with PSA 290, which was quite a shock with G9 (5+4), T3b N1 M0. This was locally advanced and his proposed 'gold standard' treatment plan was HT with chemotherapy and radiation to the prostate and lymph nodes with curative intent. He declined chemo. PSA at start of radiation was 23, down to PSA 19 when tested 6 weeks after the radiation finished. Latest test he was PSA 2.3 so following a sub-optimal treatment plan for better quality of life. Don't panic, things do move quite slowly. We are now on 6 monthly PSA tests, which seems very long to me.
User
Posted 06 Mar 2024 at 11:25

Hi Lola,

My PSA was 408, T3b NO MO Gleason 8 when I was diagnosed in January 2013.  It’s been up and down a bit over the years now it’s 2.12.

Click on my avatar to see my details etc which unfortunately I can’t update for some reason or other.

Best wishes,

Arthur

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User
Posted 04 Mar 2024 at 14:45

Hi Lola,

Sorry you’ve found yourself a member of our club but welcome anyway, you’ve done the right thing by joining!

I’m T3BN0M0 as well but my PSA was 36. There are people on here who’s PSA at diagnosis was much higher than your husband, His staging suggests that it has spread to the Seminal Vesicles (T3B) but there was nothing detected in the lymph nodes or bones.

I would speak to your CNS(Clinical Nurse Specialist) for clarification and some reassurance which it sounds like you need, and difficult as it is try not to overthink things until you’ve spoken to the CNS and Oncologist, hopefully you’ll not have to wait too long for that.

In the meantime do lots of nice things together, keep active and busy to help keep your mind off it.

All the best,

Derek

User
Posted 04 Mar 2024 at 15:51

Hi Lola. I was also T3bN0M0 on diagnosis and like Derek I had a PSA of 36. I wouldn't read too much into the PSA reading. They are extremely variable and don't have any reliable correlation to the extent of the cancer. However it might be a good idea to push for a PSMA PET which is the most accurate means of identifying any spread to nodes or bones.

User
Posted 04 Mar 2024 at 16:01

Originally Posted by: Online Community Member

 However it might be a good idea to push for a PSMA PET which is the most accurate means of identifying any spread to nodes or bones.

Hi Chris,

I think the gentleman has had such a scan, which appears all clear. However the consultant still fears mets.

https://community.prostatecanceruk.org/default.aspx?g=posts&m=292973#post292973

User
Posted 04 Mar 2024 at 18:00

Thanks Chris.

 

He’s had PSMA PET scan, it didn’t find anything in his bones or lymph nodes, but consultant feels that due to high PSA level there must be micro mets somewhere. 

I’m sorry to have posted again so soon after my initial post. It’s just very all consuming :(

Edited by member 09 Mar 2024 at 09:36  | Reason: Add to post

User
Posted 04 Mar 2024 at 19:59

lola I can't really help but just to say I've been where you are. being all consumed by it . it  does get better when u know more and it gets easier   .my partner is the same t3b m0 no and his psa was 78.8. Try not to Google easier said then done I know I was terrible for it at the beginning and working myself up. feel free to message me if u want to talk . 

User
Posted 05 Mar 2024 at 19:57

Hi 

I know exactly how you feel.My partner’s Psa was 676 ! in 2020 .

Feel free to message me if you want to chat 

User
Posted 05 Mar 2024 at 23:40
When you first join the forum and see people diagnosed with a PSA of 3 or 10 or 20, a score of 239 does sound terrifying. But, just to put it in context, we have had men here whose PSA was in the thousands - the highest was 13,000 and the highest ever recorded by my husband's urologist was 160,000. Try not to panic - the hormone treatment should bring the reading down very quickly.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Mar 2024 at 09:10
Hi Lola! My OH was diagnosed end of 2022 with PSA 290, which was quite a shock with G9 (5+4), T3b N1 M0. This was locally advanced and his proposed 'gold standard' treatment plan was HT with chemotherapy and radiation to the prostate and lymph nodes with curative intent. He declined chemo. PSA at start of radiation was 23, down to PSA 19 when tested 6 weeks after the radiation finished. Latest test he was PSA 2.3 so following a sub-optimal treatment plan for better quality of life. Don't panic, things do move quite slowly. We are now on 6 monthly PSA tests, which seems very long to me.
User
Posted 06 Mar 2024 at 11:25

Hi Lola,

My PSA was 408, T3b NO MO Gleason 8 when I was diagnosed in January 2013.  It’s been up and down a bit over the years now it’s 2.12.

Click on my avatar to see my details etc which unfortunately I can’t update for some reason or other.

Best wishes,

Arthur

User
Posted 07 Mar 2024 at 15:27

Hi Caz P, did your other half manage to come of treatment? Thanks 

User
Posted 07 Mar 2024 at 17:18

Hi well he has been off it for 8 months as psa stayed at 0.02 oct but feb was 0.07 so has to have a psa test Tom.

They are saying they expect a bounce but I am stressed out tbh.

I was expecting it to be intermittent but hope he can be off it longer as he hasn’t even recovered from the side effects yet .But having said that he didn’t suffer too badly and if it’s going to protect him then so be it .

He is also very fit and has a very manual job.

Best of luck with your journey 

kind Regards

Carolyn 

Edited by member 07 Mar 2024 at 17:31  | Reason: Not specified

User
Posted 08 Mar 2024 at 08:22

Hi Caz P thanks for your reply, I had a high psa also so know your worries, my oncologist was worried about micro mets and suggested chemotherapy darolutamide and radiotherapy to hit it hard. It seems to be working well at the moment but every psa test is an anxious moment. Hope your test goes well. I wanted to message you but it won’t let me yet. 

User
Posted 08 Mar 2024 at 16:11

Hi

Thanks 🙏 

They also hit Barry hard with hormone therapy ,chemo radiotherapy.It had grown into the neck of the bladder but they cut all that out.

He is just off for blood tests as we speak .Luckily my friend works in the macmillan centre so does it there for him so he doesn’t have to queue for ages at the path lab .

Kind Regards 

Carolyn 

Edited by member 08 Mar 2024 at 16:20  | Reason: Not specified

User
Posted 13 Mar 2024 at 05:59
Hi Lola. I was diagnosed early last year at age 59 with T3N1M0 and Gleeson 8. I can tell you it is a big shock when you have no symptoms. PSA was around 120 but no mets found on PET PSMA scan. Had spread to seminal vesicles and two local lymph nodes. So in this first year they have thrown the book at it! No surgery as not contained in the Prostate, instead hormone therapy (zoladex), chemotherapy (to mop up any micro mets) and Radiotherapy over Xmas and January. To be honest, a pain but not so bad and an opportunity to learn what things are really important in your life!! Psa now down below 0.06 and recovering well from treatment symptoms!! Strength and fitness not too bad, but have lost some muscle mass. Make sure your other half keeps active! Try not to over Google and stay positive. Don't wish away the time until the next Oncologist meeting or treatment, enjoy every day instead. Best of luck to you both, all will be fine. David
 
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