Any advice/thoughts

Hi Dave,

Thank you very much for your reply. Really is appreciated, it’s good to exchange thoughts with people who understand the subject and situation. This is such a good site.

I’ll see what the urologist says and go from there.  I’m guessing it’s likely to be MRI and then possibly a biopsy depending on what the scan shows. All the best to you. 

Cheers 

john

Hi Lyn,

Thank you for your reply. Interesting as I have to confess I thought all labs would use the same systems and give exactly the same results. My GP was good in that I guess she could have delayed things to get a nhs test. See what the urologist says.
I’m going to learn a lot on this journey and 
I feel really pleased  that I’ve joined this forum  

Thanks again.

KR’s

John

Morning Lyn,

Again, thank you for that information.

As I said it’s plainly going to be a steep learning curve for me. My GP said that tamsulosin would have no impact whatsoever on the psa test. 
I’m going to keep a diary from now on to monitor symptoms as mine are relatively intermittent compared to some I read about on this forum.

One more question I do have is that I like to cycle and run is there any evidence that in particular cycling can cause more problems? Especially now I know something isn’t quite right? 
John

On the other hand, men who suffer with prostatitis may find that swapping to a prostate friendly saddle reduces the symptoms / frequency of flare-ups.

Prostatitis was the absolute scourge of my life. Nagging supra pubic pain, weak stream, frequency of urination, outrageous pain at night, total inability to pass occasionally. Alcohol, cheese, spicy food would make an attack worse. All of these symptoms would wax and wane. Diagnosed by DRE (soft and boggy) and crp marker in blood test. Acute attacks would see me in hospital for IV antibiotics. Suffered for years.

Latest acute attack last September got me on the path to a thorough examination until eventually I had a biopsy as PSA was raised at 6.1. Boom, cancer discovered but not related to infections. Read my bio for the full info.

Prostatitis = misery.

Following Da Vinci RP March 18th this year, I’m on cloud 9, finally pain free and in remission from PCa - PSA <0.04.Histology revealed the cancer but also confirmed long- term prostatitis.

Cheers. Marty

Hi Marty,

Thank you for your reply.

sounds like you’ve also had a real time of it!

At the moment, I certainly don’t have symptoms like that.

I get aches/pain in lower abdomen area. A general ache around the pelvis. X ray done and shows wear and tear to sacroiliac joints. 

I’ve got urologist appointment on 25/5/21 but that’s only a telephone appointment, obviously they’re very busy due to Covid-19. 
Thanks again for your reply.

Cheers

john

Hi Oh Dear,

Thank you for that information. I also found quite interesting is that they said my free psa was normal but my calculated free psa was low which apparently could be a indication of prostate cancer?
I asked my gp about that and she didn’t know what calculated free psa was.

There’s so much to all of this isn’t there?

Thanks again.

Cheers

john

Hi Ivan,

Thank you for your response.

That’s a really big difference between the pin prick and the needle test. When I speak with urologist I’ll ask about free psa and see what they say.

It seems to me it is a very ‘individual’ disease and definitely best not to over think things.

Good luck for your biopsy.

KR’s 

John

I don't think that is a reasonable statement at all. It isn't "the NHS" that doesn't bother, it is that your GP didn't request it in your case and when you purchased a private PSA test you opted for a straightforward one rather than the more complex test.

Private tests aside, it is for doctors to order the tests that they require for a sample. The lab doesn't run all available tests just in case someone asks later. Uros and oncos will request free PSA where the case presenting merits it, usually where a man has concerning PSA but biopsies and mpMRI have been clear. I can imagine that it will have its uses where PCa is suspected but there are clinical reasons for not doing a biopsy or perhaps to inform Court of Protection cases where a man with significant hospital fear or dementia cannot give full consent.

Free PSA is thought to be reliable within set parameters - the PSA is between 4 - 10. There is info on the NHS Choices website.

I have studied this disease intensively on a daily basis since my diagnosis three and a half years ago, and the first mention I have heard of ‘free PSA’ is today. So no wonder GPs, who in my experience have limited knowledge of what they call PCa, have never heard of it either!

Free PSA tests are what you get from your GP! Don’t waste your time and money on any more postal thumb-prick tests.

You will have to wait ten days until your telephone conversation with the Consultant, and bear in mind Covid did not really impact on the urology department. My own surgeon had ops up to 80% of the pre Covid level at the height of the pandemic.

If they think there is any suspicion of PCa, look forward to loads more tests, scans and more waiting, so expect several months before you get a definite diagnosis and treatment plan. That should not be a problem as most prostate cancers are very slow growing.

Best of luck.

Cheers, John.

Edited by member 16 May 2021 at 04:16  | Reason: Not specified

In my case the MRI scan showed that  I have a 15 mm lesion on my 55 ml prostate. So, showed that I have a lesion (which is likely to be cancerous) and the size of my prostate- which is medium to large in size. My MRI scan at Addenbrookes was on 21/04 and I was phoned with the outcome of the MRI on 30/04. The result of the MRI  has led me to being booked in for a TP Biopsy on 04/06. 

Ivan

They did stick an intravenous drip in my arm which put in fluids of some sort or another, but I did not have to drink anything before going into the scanner. If you have not had an MRI scan before it is a strange experience as the space inside is very enclosed ( if you are more than 25 stone I was told that Addenbrookes use the Horse MRI scanner in Newmarket) and it is noisy (they put headphones on you to reduce the decibels). You spend around 20/25 minutes in the scanner.