Good News and worrying trend.,

Hey Psticks, that’s fantastic news. Long may it continue.

Thanks Amnesiac, I realise how lucky I have been. 

Hello Psticks 

Another success story to add to the list - great News and I am so pleased for you and your family. May all future PSA tests be good.

I know where you are with advising people to get tested. I always have the iconic "Man of Men" badge and a blue Prostate Cancer ribbon on my fleece or jacket and Prostate Cancer UK do a great line in T-Shirts too. it's amazing just how many men (and women) stop for a chat - and how little they know.

Keep up the good work and you can always point people in the direction of the online Community.

Best wishes - Brian.

Many thanks Millibob. Yes, I wear my Man of Men badge proudly on my work jacket. I certainly will point people towards the forum, I have found it so valuable and I thank you and everyone else who has posted. In fact I started a conversation with a chap and his wife at the Hospital on Thursday. He had just been diagnosed and was in the process of making the decision which way to go. I explained my experiences so far and they were both very appreciative of the discussion. Although you are flooded with good information when you are diagnosed, I am convinced it doesn't beat actually talking to someone who has been through the experience first hand. Luckily I had my ex boss to talk to, he had a prostatectomy 10 years ago. Although I suspect things have changed in that short time. 

So glad to hear your good news.  You are doing the right thing telling all your male family members, friends etc. to go for the test and to continue pushing for it and to have it done regularly.  I am quite evangelical about it and the people I meet must be fed up with me by now!  It is amazing that so few people know about Prostate Cancer. 

I asked for an out of time PSA test when my PSA started getting high - I was already seeing a consultant at the hospital and had a PSA test with them every year.  At the time back in 2015/16 I looked up the NICE guidelines which stated that a man with my score and increasing should be given a 3 monthly PSA check - it had been 6 months since my last check so I asked i para phrase the answer I got from my GP  If I did that for every man of your age in this practice I would be bankrupt.  It really is not necessary.  I should have told him that I wasn't asking for them for all the men of my age (though really I was) but just for me and my peace of mind.  Instead of that I walked out and mumbled about getting a private blood test done but didn't.   6 months later I had the next test which sent me down my treatment route.  When I saw my rad onc consultant he did state that I should have been sent to him about  a year before when my PSA had reached a certain number.  However, despite some scares that the PCa had escaped the capsule it looks like it hadn't done so and the HT and Radiotherapy have to all intents and purposes cured me.   I had hoped that this attitude by GP's  had changed.  It seems it hasn't.

Keep up the good work.

I had my last routine PSA test in January following RT in 2016. It had been increasing very slowly for quite some time and reached 2.07 requiring referral back to urology. I looked up the result on my GPs app and my GP had entered "Normal - No Action Required". Good job I looked and put them right - I've had MRI and PSMA scans and am due to have SABR soon on pelvic lymph nodes. Left another 12 months would no doubt have proved to be very dangerous. Your life in their hands......?

excavator said:

Your life in their hands......?

Great point.  December 2021 I was admitted to hospital with an eGFR of 8 (Kidney Function) in a normal man it should be above 60. Since than I have managed to get it back up to 58. December 2023 and it's dropped to 52 and my GP entered  "Acceptable for this Patient".

This patient questioned the GP and it's being caused by a "Medication Clash" and it's back on it's way up.

It pays to have FULL access to your medical records on the NHS App and to keep an eye on ALL of your results!!

Good luck with the SABR on the old Pelvic lymph nodes - I had mine "zapped" during my Radiotherapy in January 2023 "just in case" with a high original PSA of 182.

Best wishes - Brian.

Great news about your results. long may it continue.

Psticks said:

Or is it still the case that GP's assume the test is not reliable, if that is the case, why do they use it as a gauge so strongly once you have been diagnosed? That seems to be highly contradictory. 

The PSA test is unsatisfactory as a diagnostic tool because more aggressive types of PCa can release lower levels of PSA and less aggressive types can release higher levels. Once the type of PCa is determined by biopsy then PSA can be used as tool to monitor the state of remission as the relative levels will be understood.

For example, my PCa was Gleason 9 so very aggressive but my PSA was only 11.

We have to be so proactive don't we?  I am still waiting for a confirmation from the NHS App to say I can use it.  My surgery here in Wales only signed up to it a week before Easter and I went through all the rigmarole of trying to get on it a week later and told a confirmation e mail would be sent and could take 10 days so taking into account the Easter bank holidays thought I would wait longer but nothing - been checking all my e mails - even junk email but nothing!  I suppose I will have to try again.  I am really looking forward to being able to get on as my friends who live in Oxfordshire get a good quality of service from it - blood test results on there within 24 hrs and they can look at waiting lists for procedures they are waiting for - wonderful! 

I already have asked for copies of letters and test results to be sent to me as about 15/20 years ago a letter sent from a consultant suggesting a change of medication and follow up was placed on my file and not actioned.  Only found out about this a few years later when I went back and complained of being just the same and surely now something could be done!

the trouble is some GP 's won't realise  that normal PSA  , which this obviously is if the prostate in situ, doesn't  apply if treatment has been done.

they just look thru the notes and see  2.07 , yup that's fine, obviously not all like that

hope things go ok for you, keep us posted because we never know when ours could return 

best wishes

Steve