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PSA rising after RP in 2020

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User
Posted 20 Jan 2024 at 10:16

I had a RP in July 2020.  PSA was 36 , Gleason 9. Have recovered pretty well overall and all PSA tests were less than 0.01 until August last year when it was 0.58. I know now I should have picked up on this but my wife and I have had a load of stress since 2020 . Somehow my regular tests seem to have gone array. We moved 3 times in 21 which didn’t help.

 I saw a GP recently as I was feeling I needed to pee even after I had just been… this was the first thing that triggered me going to seek help back in 2020 and subsequently being diagnosed with cancer.

 I was told to give a urine sample to check for infection which was negative. The symptom persisted so I saw another GP who asked for the same again plus a PSA test. This came back this week at 1.2. As you can imagine I was very concerned at this. Neither GP had flagged up that there might be a problem.

I knew there was so rang Prostate Cancer UK and spoke to one of the nurses who confirmed it was a major issue and that I needed an urgent referral to oncology.

I had a telephone consultation with a GP yesterday who tried to tell me that 1.2 was within the normal range. I told him (in no uncertain terms) that he was wrong as that did NOT apply to a man who has had a RP.

Result, as he has agreed to do an urgent referral to oncology.  Clearly there is a massive lack of knowledge with GP’s re this issue and the nurse I spoke with said the same.

For goodness sake please all of you be pushy if your PSA goes up and you are worried about it. I know I should have raised concerns back in August but so should have the medics… its DIY NHS now and will only get worse so be vigilant.

Good luck to you all. I am not sure I have had much!!

User
Posted 20 Jan 2024 at 10:16

I had a RP in July 2020.  PSA was 36 , Gleason 9. Have recovered pretty well overall and all PSA tests were less than 0.01 until August last year when it was 0.58. I know now I should have picked up on this but my wife and I have had a load of stress since 2020 . Somehow my regular tests seem to have gone array. We moved 3 times in 21 which didn’t help.

 I saw a GP recently as I was feeling I needed to pee even after I had just been… this was the first thing that triggered me going to seek help back in 2020 and subsequently being diagnosed with cancer.

 I was told to give a urine sample to check for infection which was negative. The symptom persisted so I saw another GP who asked for the same again plus a PSA test. This came back this week at 1.2. As you can imagine I was very concerned at this. Neither GP had flagged up that there might be a problem.

I knew there was so rang Prostate Cancer UK and spoke to one of the nurses who confirmed it was a major issue and that I needed an urgent referral to oncology.

I had a telephone consultation with a GP yesterday who tried to tell me that 1.2 was within the normal range. I told him (in no uncertain terms) that he was wrong as that did NOT apply to a man who has had a RP.

Result, as he has agreed to do an urgent referral to oncology.  Clearly there is a massive lack of knowledge with GP’s re this issue and the nurse I spoke with said the same.

For goodness sake please all of you be pushy if your PSA goes up and you are worried about it. I know I should have raised concerns back in August but so should have the medics… its DIY NHS now and will only get worse so be vigilant.

Good luck to you all. I am not sure I have had much!!

User
Posted 20 Jan 2024 at 12:57

Originally Posted by: Online Community Member

I had a telephone consultation with a GP yesterday who tried to tell me that 1.2 was within the normal range. I told him (in no uncertain terms) that he was wrong as that did NOT apply to a man who has had a RP.

Result, as he has agreed to do an urgent referral to oncology.  Clearly there is a massive lack of knowledge with GP’s re this issue and the nurse I spoke with said the same.

Hi Martin, nice to meet you.

I used to naively have total trust in the NHS. However, mistakes in my treatment, and appalling communications, have now made me question any advice I'm given. I  now keep full records of any results or consultations, to ensure further mistakes aren't made. I fear that as more and more pressure is put on the NHS, the number of mistakes made will escalate accordingly.

Adrian

Edited by member 20 Jan 2024 at 13:20  | Reason: typo

User
Posted 20 Jan 2024 at 20:26

Hi Adrianus

You are right to question everything. I have a log of all contacts as well. We all really need to be vigilant and fight our corner. I am so angry with the docs but also with myself for not picking up that there is something going on. I have worked for the NHS in the mental  health service a while back now but I could see things deteriorating then and knew it would get worse. I am really apalled by it and so angry with myself for not doing something sooner. You really have to push  now for any action.

We have a granddaughter of 12 who has anorexia, depression and social anxiety and we  had to go privately to get a diagnosis. She has had virtually no in put from the local services. It is an absolute disgrace. End of rant but thanks for your reply. Keep well.

User
Posted 20 Jan 2024 at 20:27

Thanks for your reply. You have to push push push for any action now so make sure you do.

All the best

User
Posted 21 Jan 2024 at 14:31
That is shocking it probably wasn't a GP at all, probably some AI chat bot!

That needs looking at urgently, PSMa scan etc. don't let them palm you off

User
Posted 21 Jan 2024 at 20:01
Hi. Thanks for responding. It was a GP I spoke to and was the same one I saw face to face. He told me to get another PSA. He was totally ignorant and had no idea how serious an increase in a PSA after a RP can be. Something needs to change. I am just hoping that it won't be too bad. Stress though. I am on the case and will be chasing up an early appt with oncology.

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User
Posted 20 Jan 2024 at 12:57

Originally Posted by: Online Community Member

I had a telephone consultation with a GP yesterday who tried to tell me that 1.2 was within the normal range. I told him (in no uncertain terms) that he was wrong as that did NOT apply to a man who has had a RP.

Result, as he has agreed to do an urgent referral to oncology.  Clearly there is a massive lack of knowledge with GP’s re this issue and the nurse I spoke with said the same.

Hi Martin, nice to meet you.

I used to naively have total trust in the NHS. However, mistakes in my treatment, and appalling communications, have now made me question any advice I'm given. I  now keep full records of any results or consultations, to ensure further mistakes aren't made. I fear that as more and more pressure is put on the NHS, the number of mistakes made will escalate accordingly.

Adrian

Edited by member 20 Jan 2024 at 13:20  | Reason: typo

User
Posted 20 Jan 2024 at 19:06

Hi Jackson L,

So sorry to read of your recent experiences, and I will certainly heed your good advice re. G.P.'s lack of knowledge. 

Hope things work out for you.  Take good care of yourself.

JedSee.

User
Posted 20 Jan 2024 at 20:26

Hi Adrianus

You are right to question everything. I have a log of all contacts as well. We all really need to be vigilant and fight our corner. I am so angry with the docs but also with myself for not picking up that there is something going on. I have worked for the NHS in the mental  health service a while back now but I could see things deteriorating then and knew it would get worse. I am really apalled by it and so angry with myself for not doing something sooner. You really have to push  now for any action.

We have a granddaughter of 12 who has anorexia, depression and social anxiety and we  had to go privately to get a diagnosis. She has had virtually no in put from the local services. It is an absolute disgrace. End of rant but thanks for your reply. Keep well.

User
Posted 20 Jan 2024 at 20:27

Thanks for your reply. You have to push push push for any action now so make sure you do.

All the best

User
Posted 21 Jan 2024 at 14:31
That is shocking it probably wasn't a GP at all, probably some AI chat bot!

That needs looking at urgently, PSMa scan etc. don't let them palm you off

User
Posted 21 Jan 2024 at 20:01
Hi. Thanks for responding. It was a GP I spoke to and was the same one I saw face to face. He told me to get another PSA. He was totally ignorant and had no idea how serious an increase in a PSA after a RP can be. Something needs to change. I am just hoping that it won't be too bad. Stress though. I am on the case and will be chasing up an early appt with oncology.

User
Posted 01 Feb 2024 at 20:48
I had and appt with the oncologist today which went well. She was brilliant and patient and gave loads of info. She was aware of the problem with GP's not really getting PSA results after a RP. She told me that she is under pressure to discharge men from oncology back to their GP but it is not working well as many of the Gps do NOT follow up as requested. This is the expeireince I have had . There is still much education with GP's needed. I get that they can't know everything but with prostate cancer now being such high profile I really do not think there is any excuse for ignorance.

Anyway I am being referred for a PET scan to determine where the cancer cells are and then depending on the result it will be either radiotherapy if the cancer is contained within one or two areas but if more than that then hormone treatment is indicated and probably on an ongoing basis. TBH I was relieved in a way as I thought it was going to be a lot worse. Apparently the PET scan is likely to pick up more if the PSA is like mine at 1.2 and should have more chance of pinpointing where the cancer cells are .

2 to 3 week wait for a scan hopefully so will no more then.

Just to stress again .. keep up with the PSA tests and ensurre you are forcefull with your GP if they say it is in the normal range after a RP if its under 3 as it clearly is not. It is a major problem apparently.

Regards to you all.

 
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