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3rd time unlucky

User
Posted 19 Feb 2020 at 21:16

Hi,

Long story short.

Went to docs probably couple of years ago because had blood spotting on paper after a No2. Turns out was piles but as I was 58 and convieniently touching me toes he had a rummage and said I had an enlarged prostate. Bloods showed an abnormal PSA count.

Referred to a consultant who sent me off for an MRI and then a biopsy. Nothing found.

6 months later PSA had risen. Another MRI and biopsy. Still nothing.

Senior consultant suggested 6 monthly PSI count so went with it. PSA now 24. Another MRI shows prostate 4 times size it should be and abnormality on nodes. Another biopsy yesterday, 5 samples from each side of prostate and 6 from nodes. Can still hear clicking now.

I feel myself that this time something amiss but results in a couple of week will confirm. Mrs shiting herself but I don't do worry until I have to.

Any similar experiences or advice?

Thanks.

Nick.

User
Posted 20 Feb 2020 at 15:45

Thank you peeps.

I've downloaded the tool kit and though it's scary better to be forewarned / educated.

Just wait for results I guess but thanks for taking the time to respond.

Nick.

 

User
Posted 26 Feb 2020 at 22:52
Perhaps you would cope better by understanding what is going on behind the scenes. The biopsy cores need to be processed, assessed in the lab, the results reported to the urologist so that s/he can review the findings and make a diagnosis and then usually, the results will go to a multi-disciplinary team for review. The MDT usually meets once a week. Two weeks for the results is very common.

No news can be good news or bad news - it depends what day of the week the MDT meets. Where we live, they meet on a Friday so men that have biopsies on a Monday may have to wait almost a week longer than a man who had his biopsy on a Thursday

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

User
Posted 25 Oct 2021 at 21:15

Isolating at home.

In Friday for removal after original procedure cancelled. (Damn you, covid)

Got bad vibes, don't know why, though its not been a good "journey" from the off.

Nick.

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User
Posted 20 Feb 2020 at 00:34
Hi Nick,

It’s very unfortunate that you have had to undergo three biopsies, which with your mention of ‘clicking’, I presume were TRUS biopsies - ‘gun up the bum’. These are not very accurate, which is why you have had three of them. Many hospitals are abandoning them in favour of transperineal biopsies where more samples are taken from a targeted area guided by the MRI imaging. I had 42 samples taken.

Something untoward is happening, what with your increasing PSA and abnormality on the MRI scan. Fingers crossed it’s not cancer, but in any event, you might like to order the free comprehensive information folder called the ‘Tool Kit’ from this website. Search for it under ‘publications’.

Best of luck.

Cheers, John.

User
Posted 20 Feb 2020 at 09:47

Originally Posted by: Online Community Member
TRUS biopsies - ‘gun up the bum’. These are not very accurate, which is why you have had three of them. Many hospitals are abandoning them in favour of transperineal biopsies where more samples are taken from a targeted area guided by the MRI imaging. I had 42 samples taken.

What you describe was the case when I was being diagnosed 18 months ago, but it's wrong now.

TRUS biopsies are guided by mpMRI scans nowadays, and are therefore more accurate than they were up to a year ago.

However, hospitals are abandoning TRUS and the transperineal template biopsies you describe, in favour of the new LATP biopsies. These are just like TRUS, but samples are taken through the perineum (without a template, as only two puncture points are used) under local anesthetic in an outpatient setting, and again guided by mpMRI scan and rectal ultrasound probe (often with image fusion guidance). Same click as TRUS though.

Transperineal template biopsies are still used in some rare cases where the mpMRI scan hasn't produced useful imaging, but PCa is suspected to be present for other reasons.

User
Posted 20 Feb 2020 at 10:18
With such a large prostate, your PSA may not be that surprising. It is right that they have taken more samples from the suspicious area but men with much higher PSA than yours have been given the all clear so don't assume you have cancer yet. The scan can identify suspect areas and if it was an mpMRI, can predict the likelihood of cancer (on a scale of 1 - 5) but cannot diagnose - the suspicious area could be bruising or infection.

The toolkit is essential reading.

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

User
Posted 20 Feb 2020 at 15:45

Thank you peeps.

I've downloaded the tool kit and though it's scary better to be forewarned / educated.

Just wait for results I guess but thanks for taking the time to respond.

Nick.

 

User
Posted 26 Feb 2020 at 20:50

Hi again.

A little more concerned than I was.

Spoke to urology nurse specialist last Friday (21/02) regards latest psa count. Asked the question "anything back yet?" from pathology and was told no, but if a negative they would ring.

Not had a call or letter. Mrs is climbing the wall.

I know they said up to 2 week for results (was a week Tues) but if no letter in morning will ring again.

No news is good news?

Your thoughts please.

Nick.

User
Posted 26 Feb 2020 at 22:52
Perhaps you would cope better by understanding what is going on behind the scenes. The biopsy cores need to be processed, assessed in the lab, the results reported to the urologist so that s/he can review the findings and make a diagnosis and then usually, the results will go to a multi-disciplinary team for review. The MDT usually meets once a week. Two weeks for the results is very common.

No news can be good news or bad news - it depends what day of the week the MDT meets. Where we live, they meet on a Friday so men that have biopsies on a Monday may have to wait almost a week longer than a man who had his biopsy on a Thursday

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

User
Posted 29 Feb 2020 at 11:26

Hi again, 

Spoke to consultants secretary yesterday evening, results are back but she cant tell me over the phone.

Consultant is ringing Monday to tell me "what were doing next".

Roll on Monday I guess?

Nick.

User
Posted 02 Mar 2020 at 20:13

Evening,

Got result today from my 3rd TRUS biopsy and no cancer found. This despite PSA of 24 and very enlarged prostate, as well as MRI showing abnormality on node.

As pointed out to me on this site, something is not right, but hey, no cancer.

Back to bloods every 3 months I guess?

Nick.

User
Posted 31 Jul 2021 at 19:33

Update....

Things gone from one extreme to another. Was being monitored with 6 monthly PSA tests. Went up to 24 so another MRI. Was told over the phone 2 areas of concern, either side of prostate, which now measures 120, looks like cancer.

Heard nothing regards next steps so couple of week later ring consultant's secretary. Explained no comms, phone or letter, so she checks. Note on file to say monitor for further 6 month.

Don't think so says I, can one of the 4 I've seen call me please. Lady calls, apologises for lack of comms, monitor for further 6 months.

Explained consultant who rang after MRI adamant cancer present so would like another biopsie. 

This was done on a Tues. On the Friday call to say can I attend a bone scan Mon? Do bone scan, call from another consultant Tues to say bone scan clear but a 7 score cancer in prostate. What if it had been left another 6 month?

Consultant reccomends removal or radiotherapy. 

'Kin head all over the place

Oncologist (and team?)Thursday.

Sails, wind, of, knocked, out to say the least.

Nick.

User
Posted 01 Aug 2021 at 11:32

Just goes to show that you have to keep the pressure on and not totally rely on the doctor/hospital keeping you informed/taking the right action.

 

Ivan

User
Posted 01 Aug 2021 at 11:53
Prostate cancer is very slow-growing. A six-month delay generally makes very little difference. When prostate cancer is diagnosed, it's generally been there for years.

Things should start to move quite quickly from this point onwards. Make sure that you get an appointment with both a urologist to discuss surgery and an oncologist to explore non-surgical treatment such as radiotherapy or brachytherapy.

Best wishes,

Chris

User
Posted 02 Aug 2021 at 08:40
Just goes to show how discredited the TRUS biopsy is, (thankfully being phased out now).

If you had had a transperineal biopsy originally, most likely the cancer would have been detected, and you would probably be over your treatment for it by now!

Best of luck.

Cheers, John.

User
Posted 02 Aug 2021 at 22:28

Thanks gents.

Can't help but feel not as assured about either who or what is best for me now.

Thursday will enlighten me more I guess?

Thanks,

Nick.

User
Posted 25 Oct 2021 at 21:15

Isolating at home.

In Friday for removal after original procedure cancelled. (Damn you, covid)

Got bad vibes, don't know why, though its not been a good "journey" from the off.

Nick.

User
Posted 27 Oct 2021 at 19:17
Good luck!
User
Posted 03 Nov 2021 at 16:51

So, 

Isolating again, op due Friday if today's covid test comes back negative, which it should, so hopefully 3rd time lucky?

I've been on here reading as another problem now.

Last couple of days, and nights, been weeing lots, not much wee but lots of aching when I do. Do I keep quiet about it and hope the op goes ahead as planned or ring for advice and maybe risk the op being cancelled again?

Mrs says keep schtum. 

If its a water infection would it matter?

Anyone had similar or can advise?

Thanks in advance.

Nick.

 
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