No more MRI scans?

Does St James' have some sort of better scanner?

I've asked for an appointment with a consultant to talk about this (I reckon I'm due one, not having spoken to a consultant for nearly 2 years) so will see what develops.

I'd be interested to hear what happens in other areas though.

I had a local anaesthetic for the biopsy - he went in via my bum.

On the MRI scan, they injected something into my arm towards the end of the scan - I assumed this was the contrast.

What I find strange is that you describe having second biopsies and other treatment when your PSA went from 5.76 to 6.01and yet my PSA went from 8.5 when first diagnosed up to 14.9 just 19 months later and yet I am struggling to get another MRI scan.

You must be lucky to live in a far better health area than I do.

Do other people reading this and on AS get regular MRI scans or is it just my area that are tight with them?

As said, the biopsy was through my bum, so not a transperineal one (might have known, if there are two types, mine would be the least good one!)

Lesions have not been mentioned to me at any point and I can't see anything about them on a report that I was sent.

I have an appointment with a consultant in about 5 weeks time (no rush, of course!) and will discuss both lesions and transperineal biopsies with him.

Would be nice to be be armed with at least some anecdotal evidence about how often MRI scans are carried out in other areas.

I know that my diagnosis is a lot better than many of the people on here (and I am grateful for that), but my concern is that once cancer starts, it tends to keep going. I am worried that the 'active surveillance' proposed is simply a matter of waiting until it gets a lot worse before doing something about it.

Edited by member 05 Nov 2021 at 12:24  | Reason: Not specified

I think ohdear has misunderstood some of the information and possibly confused matters.

You do have a lesion which was visible on a scan; we know that because they told you that it hadn’t changed at all from one scan to the next even though your prostate had increased in volume. It is just that many urologists don’t call it a lesion; they may refer to it as ‘the affected area’ or ‘the tumour’ or ‘the cancer’.

Your PSA is fairly stable - the small increase from 11 to 14 is lower than would be expected for such an increase in prostate size, and then you have had a small drop on the most recent test. The biopsy cores will have been taken from the suspicious area; I can’t see any reason why you should push for a template biopsy at this point. Template biopsies (particularly with general anaesthetic) are being phased out in some areas in favour of image guided TRUS or image guided perineal; it may be that you had image guided biopsy which is very different to the old style ‘stick a needle in randomly and hope for the best’ TRUS.

In terms of protocols for repeat MRI, the NICE guidelines say that a man on AS should have a second mpMRI about 12-18 months after starting on AS. There is no recommendation to repeat it again in future years. It seems your onco is following best practice. 

Edited by member 06 Nov 2021 at 00:49  | Reason: Not specified

On the MRI scan (lack of) though, as you said “I don’t see how it is ‘active’ surveillance without some pictures of what’s happening inside”.

On the numbers -

My PSA was 8.5 at diagnosis and my prostate 89ml.

One year later PSA 11.5 (35% increase) and prostate 119ml (34% increase).

So increased PSA could well be explained by the increased size - although no explanation of reason for the big jump in size has been offered.

9 months later PSA 14.9 - a further increase of 30% and an overall increase of 75% in 21 months.

Of course, I don’t know whether this is because the prostate has grown some more (it would need to be about 155ml to explain the PSA) because they won’t be looking at it again.

Also, just how big can a prostate get before that in itself is considered a problem to them?

I really don’t want them to find the cancer has got worse, but I feel like we are fishing in the dark.

Incidentally, the NICE guidance also says a DRE every year and I haven’t had one of those since before I was diagnosed and there aren’t any plans to have one (‘covid’ I guess). In any case, I think a MRI would tell them a great deal more than feeling around with a finger.

Attended appointment this week - was told it would be in 2 weeks, it was actually 7 weeks later.

Was to be with consultant but he apparently wasn't available so it was with another doctor.

Discussed PSA level (initial 8.5, a year later 11.5 = 35% increase, MRI showed prostate size increased from 89ml to 119ml = 34% increase).

In September PSA 14.9 so another 30% increase - that would need prostate to be 156ml.

She says it doesn’t necessarily follow in parallel.

Biggest she has ever seen is 150ml

Still no explanation of increasing size, other than age.

MRI scan - she says they don’t have capacity for every year.

I pointed out that they were relying on inaccurate PSA and just waiting for it to go wrong. Also, isn’t a 75% increase in 19 months seen as a problem?

She says they would use biopsy rather than MRI - I pointed out they would be ‘fishing in the dark’ and that would also use resources.

I pointed out 2nd MRI seemed important to check for size, spread etc. but not now?

She says MRI is only an image and not accurate. Biopsies are better.

She says treatment is always an option they could offer - surgery or radiology.

I pointed out that would use huge resources - there is no logic to that.

No agreement reached. We just went around in circles.

She will pass on to consultant for final decision, but not likely he will ask for MRI.

She also says radiologist would refuse to do it.

Next PSA check in February.

I don't feel that this is good active surveillance.

My main reason for posting on here was to try to find out what was 'normal' for AS and what other health authorities do.

I am aware that NICE only say that MRI scans should be done only at initial investigation and a year later, but presumably this is the minimum and maybe some areas go beyond the absolute minimum.

I don't know what's involved in going to another cancer centre, but will research that. If anyone has any information / links, that would be welcome.

I can’t afford to go private.

I’ve already paid for the NHS.

 My PSA was initially tested  in March 2018  when I reached 60 and was found to be 3.58. I decided to have another PSA test in March this year and because it had increased to 5.32 I had another PSA test a month later- that gave a reading of 5.76. An MRI scan in April found a lesion on my prostate and that led to my first biopsy in June.That  biopsy confirmed that I had cancer (category 2, Gleason 3+4 =7), but because it was only found in 3 of the 13 cores taken and because only 5% of the cancer was deemed to be  category 2 (the rest was category 1, Gleason 3+3=6), I decided to go on AS. My review was scheduled for 3 months and in September I had another PSA test; that gave a reading of 6.01. Because of the increase in PSA, I underwent a further biopsy on 16/09 and this found that 15 of the 19 core samples that were taken were cancerous.  Although the grade of cancer was the same as before (Category 2, with only 5% category 2) the fact that there was more found led me to decide to come off AS and start treatment. After weighing up all the options, I  decided to opt for surgery and this has been scheduled at Addenbrookes on 21/12.  To confirm that the cancer was all contained within the prostate, I did have a Abdomen and Pelvis with contrast CT scan on 04/10 and this found nothing untoward.

As has been previously mentioned, nothing can be taken for granted with regard to cancer. Though it is very unlikely that my cancer had gone from one small part of my prostate (June) to all over the prostate (September) in just a few months, the fact that a second biopsy found  that  there was more cancer than was first thought is perhaps an indication of what can be missed during a scan or biopsy. Indeed, several people who have had their prostate removed and have had it fully analysed have been told that the category of cancer present was higher than first thought.

Hi Ian 

I have some similarities to your situation. I have been on AS since I was diagnosed in 2015 (I am now aged 65).

I had TRUS biopsies in 2015 and 2018 both of which gave a result of G 3 + 3, 2/12 cores, stage T1c.

My PSA results have been:

2014   7.32

2015   7.19

2015   6.58

2015   6.8

2016   8.3

2017   I am missing these!

2018   12.1

2018   12.0

2019   13.9

2020   13.8

2021   14.2

I had MRI scans in 2015, 2018 and then another in June 2021 which my consultant said showed an area "which is a bit more apparent". This was followed up with a transperineal biopsy in November 2021 which gave a result of G 3 + 4, 4/20 cores, stage T2c. My consultant said that one core was 80% Grade 4 cancer.

He recommended having the prostate removed, with radiotherapy as a less preferred option and then continuing active surveillance as the least preferred option.

If my latest biopsy had come back as G 3 + 3, I might have continued with AS, but I expect to take his advice and have it removed.