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Still waiting

Posted 09 Oct 2018 at 17:38

Maybe it's me but the process of getting a diagnosis feels like running through treacle. My old GP suggested a PSA test a few years ago and that came back at 5.8 but after discussion with the then local consultant he put me antibiotics and another PSA test one month later was back below 4. He suggested that to be safe I should have a PSA test every two years. Moved up to Cumbria about 18 months ago and had a PSA test this July. That came back at 6.5 but the GP did a DRE and said it seemed normal but sent me to the consultant. Thy also did a second PSA in the meantime. Visit to the Urology clinic and another PSA and DRE test- again nothing obvious - as well as a referral for am MRI.

Today I had the follow up. The third PSA was now 4.8 - normal for a man of my age(69) said the doctor - and the MRI showed no "significant" abnormalities. He suggested a biopsy to give more certainty but even then suggested it was not fail safe! I accepted the advice so am now waiting for an appointment.

This is so different from the swift diagnosis and action when I was found to have squamous cell carcinoma some 16 years ago. Just one question is the biopsy really necessary and helpful or will I still be left in limbo?

Posted 09 Oct 2018 at 20:54
PSA normal, DRE normal, MRI normal, why are you having a biopsy?? Are there other symptoms??
Posted 09 Oct 2018 at 21:00
I think if you were my dad I would be thinking another PSA test in 3 months and then if there is any rise, consider a biopsy at that point. If the PSA is stable, I would be happier with 6 monthly tests thereafter - 2 years seems too long a gap to me.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Posted 09 Oct 2018 at 23:16
Over treatment in PC is as bad as under treatment. Biopsies, carry a significant non trivial risk and are to be avoided if you can do so safely.

Certainly would not be having a trus with no obvious target to aim at. Waiting 3 months is not likely to do any damage.

Posted 10 Oct 2018 at 11:56


Thanks for the comments which have only reinforced my doubts about the process I was about to undergo. I think looking back that the doctor was so keen to avoid saying something like " there are no indications of a problem" that by the time he he had put in so many caveats on the various tests that it sounded like there was a bigger risk than there may really be. So I have spoken to his Secretary - getting there was fun - and cancelled the biopsy. He can decide if he wants to refer me back to the GP for another PSA test in 3/4 months or make me drive for an hour to their clinic (that's the price of rural life!). I ought to make clear that the two years my old GP suggested was only if the tests were "normal".

Edited by member 10 Oct 2018 at 11:58  | Reason: Not specified

Posted 10 Oct 2018 at 15:51
Book the appointment now don't wait for them!! It's important you don't forget or mis it!
Posted 10 Oct 2018 at 16:27

Originally Posted by: Online Community Member
Book the appointment now don't wait for them!! It's important you don't forget or mis it!

Wholeheartedly agree - be proactive and get it in your diary. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Posted 10 Oct 2018 at 17:30

Hi, am I correct that you had to go to Blackburn for the biopsy.  I looked up Robotic surgery at Blackburn and noticed that patients from Cumbria were referred to Blackburn for surgery.  The Morecambe Bay hospitals only have specialist urology nurses.   

Also I believe Cumbria patients have to travel to Preston for Radiotherapy.  Quite a journey if it's a daily course.  Tim Farron was campaigning for Radiotherapy improvements in Cumbria and I can understand it.

Like you I also had skin cancer surgery, at Preston around 10 years ago, and noticed at the time that there were video facilities for clinics in Cumbria.

All the best


Posted 10 Oct 2018 at 18:05



No only had to go down to Kendal for the outpatients but Lancaster for the MRI - on a Sunday!. Chemotherapy is I understand at Lancaster as well. But everything in Urology does seem to be based in Lancaster but as I never actually got a date for the biopsy I don't know where it actually happens!

Posted 11 Oct 2018 at 08:39

Threads have a habit of developing their own momentum, and we sometimes lose sight of where we started from.

We seemed to start from a position of pretty consistently getting low PSA readings where nobody was worried and moved into biopsies etc, 

I would suggest it's time to consider if it's best just to wait and see over the next months and years.

Many experts have concerns that there is a tendency to overdiagnose too early, and get on a fast moving treadmill, when nothing actually needs doing because with the speed this cancer grows we'll almost certainly die of something else. I do understand we all want to get it sorted ASAP. 

Knowing what I now know (my hormone and RT treatment which has been successful ) I think I might have taken my own advice. It essentially took out a year of enjoying my life.

I think I would get my dogs organised and go for a walk around Buttermere and review my options. Good luck, it's a personal choice, and only you can choose. 

Edited by member 11 Oct 2018 at 08:40  | Reason: Not specified

Posted 11 Oct 2018 at 17:03

I have to say that there is a fine balance between letting the medics takeover your life and staying healthy. This started from my wanting to make sure that there was no serious problem by having the original test and from an adverse result - but way below the kind of results others seem to have had - which was then corrected by my body to a later "safe" result, two DRE's that were pronounced as fine and an MRI which showed nothing. The doctor seemed to be behaving like he was terrified if they failed to spot anything that not only would I suffer but they would be pilloried. The NHS Trust in question has had a seriously bad press for failings in another specialty so I do wonder if that affects their approach. I was concerned when one of the urology nurses said before the MRI something like - well you'll have a biopsy after the MRI - like she assumed that having got there I was bound to be in need to treatment. I now wonder if that is their default position as they admitted MRI is new to them. Their style and approach is just so different to the Walton Centre in Liverpool where I had my treatment and follow ups 16 years ago for my squamous cell carcinoma. This time no sharing of information in writing and I was talked at and asked to make an instant decision rather than being given time to process the information and mull it over.

Still I will be "reviewed " in 4 months so I will live my life in the meantime as worrying will not make anything better. Sadly, though our cats won't join us on our regular walks around all the great places so local to us.

Thanks to everyone for their comments and advice but I think this thread can be put to bed for at least four months and hopefully much longer!

Posted 11 Oct 2018 at 17:15
Well, to finally chip in to the end of your thread, arrange to have another PSA test in 4-6 months and we hope never to hear from you again! 😉

Best of luck, John.

Posted 11 Oct 2018 at 17:17
Nothing personal but I share your sentiment!
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