How reporting early issues eventually led me to make the wrong decisions

Robert,
Sorry for your situation. However, we now know that the classic lower urinary tract symptoms (LUTS) that were commonly listed as symptoms of prostate cancer are in fact almost never symptoms of prostate cancer, but symptoms of an enlarged prostate. To be honest, support groups have known this for years as 80% of men diagnosed with prostate cancer had no symptoms, but research at Cambridge University has recently confirmed this. The research goes on to point out that the emphasis on prostate cancer symptoms in awareness materials is so misleading that it's resulting in many people not being diagnosed early enough, because they didn't have any of those symptoms. So the PSA testing of men who turn up at the GP with LUTS is not logical - that's not a basis for selecting who to test. Actually, men with an enlarged prostate have a very slightly less chance of getting prostate cancer, so men who don't have any LUTS are possibly more likely to have prostate cancer than those who do.

So you certainly shouldn't be beating yourself up over your long standing LUTS, which is statisically unlikely to be related to prostate cancer. What we need is screening for prostate cancer. The EU has just told all its member states they need to start rolling out PSA-based prostate cancer screening, now that there's sufficient evidence to show this is both effective at saving lives, and cost effective (the EU recons it costs 20x more to fail to cure a case of prostate cancer than it does to cure it).

Edited by member 27 Dec 2022 at 22:03  | Reason: Not specified

I appreciate the point you are making about the potential adverse effects of unnecessary medical intervention. But my prostrate cancer was identified with a MRI scan. I am still waiting for a biopsy. Whilst no medical intervention is entirely without risk surely the risk from a noninvasive scan is less than that from a biopsy. Of course this would probably require a considerable investment in scanning equipment. Maybe that is where a lot of the problem lies. 

In addition the difference between my still ongoing diagnosis and the diagnosis plus treatment for my wife’s breast cancer, which has been running at the same time, is the difference between chalk and cheese. Her appointments are made quickly and updated with equal speed and attention as required whereas mine, at the same hospital, have been slow and at one point cancelled without explanation or a replacement appointment offered for over two weeks. It certainly appears that the treatment of prostrate cancer currently receives a much lower priority than breast cancer at present. 

I started annual psa tests when I turned 60 as it seemed a wise thing to do and my gp readily agreed. PSA initially low but climbed slowly over the years as did visits to the loo at night plus   an occasional UTI

DRE us flow test and chat to consultant concluded benign hyperplasia. Prescribed finasteride plus prophylactic trimethoprim to ward off UTI.

Psa lowly increased to about 7, gp said to keep an eye. Forward to Nov 2021. Psa now 14 but finasteride doubles this!  So beware!!. Gp phones urology at Ashford and St Peters. Mri scheduled for following week. MDT conclusion was cancer with some sv involvement.

Biopsy and ct a couple of weeks later with diagnosis of T3b N0. Bone scan and cystoscopy another week or so to add M0 to staging a d no bladder involvement. Gleason9 (4+5)

To conclude, I had been thinking things were OK  and it was a nasty shock to find things were not. I cannot fault the treatment I received at St Peters and Royal Surrey St Lukes Guildford for RT. I am 79 now and psa followup 0.08. Still affected by lingering HT side effects despite oncologist stopping Zolly early.

We do need a better screening  programme to stop  nasty surprises as a few months delay in my case would have been very bad

A 16 year European study reported in 2019 that demonstrated the benefit of Screening.  It is possible to mitigate the risks of over diagnosis ( link below). 

Also in September the EU Commission recommended the introducing screening for prostate cancer. One assumes they took account of all the available evidence in coming to this recommendation. Although there is no evidence of such a program being introduced here in Ireland anyway. 

My GP told me when I was diagnosed that they are told to dissuade asymptomatic men who request a PSA test from getting it.  So there are a lot of mixed messages on this issue. At a minimum there should be more awareness around PSA testing as my cancer would not have been detected if my GP had not done a PSA test himself (as I was not even aware of such a test). 

https://pubmed.ncbi.nlm.nih.gov/30824296/

What are the new cancer types that have been added and why these three?

The Commission proposes to introduce screening for lung, prostate, and, in certain conditions, gastric cancer.

Prostate cancer: the Commission proposes introducing to prostate-specific antigen (PSA) testing – like a blood test - for men up to 70, in combination with additional magnetic resonance imaging (MRI) scanning as a follow-up test.