No more MRI scans?

User

Posted 01 Nov 2021 at 12:38

Hello,

I am 66 years old and was diagnosed with prostate cancer in February 2020.

I believe I should be considered 'lucky' as the biopsy came back with 3+3 = 6 in one core.

I followed recommendations and went down the Active Surveillance route.

I had an initial MRI scan and then another after 12 months. They tell me that the cancer hasn't got bigger but my prostate went up from 89 to 121 ml in that one year period.

My PSA level was initially about 8.5 but increased to about 11.5 after the biopsy. It's more recently gone up to 14.9 and was 14.6 on the last test this week. I was told that they would look at options if it got to 18.1 (something about the level in proportion to size).

More concerning, I was expecting an annual MRI scan (actually seeing the thing, rather than relying on a fairly unreliable test seemed to be be the way to go). However Ive been told that they don't do them annually unless the PSA level is going up (I thought mine was).

This seems a bit like waiting for a car to break down before getting it checked over at a garage.

Is this normal?

Also, I read on here that Dewsbury Hospital don't offer the best type of MRI (mpMRI?) which surprised me a bit, because I was told that I'd been sent to Dewsbury because they have a better machine than at Pinderfields.

User

Posted 01 Nov 2021 at 17:20

My friend at Pinderfields is sent to St James's Leeds for his scans.

I have heard this - that annual scans are not being offered to men on AS. like you, I can't see how it is 'active' surveillance without some pictures of what is happening inside. Perhaps it is financial or to reduce the number of outpatients going in and out of the hospital but I wouldn't be very happy about it if you were my brother or dad.

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

User

Posted 01 Nov 2021 at 17:36

Thank you Lyn and I agree with you about the 'Active' bit.
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.

User

Posted 01 Nov 2021 at 21:05

Yes, Jimmy’s is a teaching hospital with a highly regarded uro-oncology department and uro-oncology research centre. They have mpMRI with 3T capacity and also other types of scan although some of these (like FACBC) are only accessed through trials, I think. If you ended up having to pay, the hospital also has its own private healthcare business attached to the oncology wing and I am told that profits are ploughed back into NHS service delivery and the research department.

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

User

Posted 02 Nov 2021 at 09:05

Originally Posted by: Online Community Member

Some hospitals have found that a bi-parametric 3T scan without contrast can be as good or better, so not having an mpMRI (with contrast) is not necessarily bad providing they have 3T and appropriately skilled radiologists.

User

Posted 02 Nov 2021 at 12:44

As a matter of interest, Ian, when you had your last biopsy was it a local or a general anesthetic one? The reason I ask is that when I had a local one back in June the biopsy revealed that only 3 of the 13 cores were cancerous, all on the right side of the prostate. When I had a general anesthetic biopsy in September, because my PSA had increased from 5.76 in April to 6.01 in September, 15 of the 19 cores were found to be cancerous and the cancer was found throughout the prostate. It was still 3+4 (category 2), as it was in June, but because more of it was found, I was taken off Active Surveillance and will now have surgery to removw my prostate.

User

Posted 05 Nov 2021 at 11:22

Sorry, thought I'd answered this before, but it doesn't appear to have saved my reply.
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?

User

Posted 05 Nov 2021 at 11:54

Hello Ian

My understanding is that the local anaesthetic biopsy is not as "forceful" as a general one and that the cores are not extracted as deep from the prostate- probably because you are still awake and have not been given a good strong dose of painkiller. From what you say, it appears you did not have a transperineal biopsy, as I did on both occasions, but a TRUS one. They are generally not considered as good in finding the cancer as a TP one is.

Did the original MRI scan find a lesion on your prostate? I assume you had this before the biopsy?I certainly think, based on your latest readings, that rather than having another MRI scan, unless that is now too old to be of any use, you should be pushing to have a TP general anaesthetic biopsy. The increase in PSA is usually not a good sign, as I found out, and I would want action taken so that a decision could be made as to what the next steps should be.

I live in the Cambridge area and my hospital is Addenbrookes, and I certainly have no complaint about the level of service I have received from them or, indeed, from my local GP.

If you have not read my history it might be useful for you to do so so that you get an idea of how things should be.

User

Posted 05 Nov 2021 at 12:23

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

User

Posted 05 Nov 2021 at 18:55

There are so many variables that I doubt you can easily make a comparison by area.

You could say that I was put on Inactive Surveillance. With the benefit of hindsight, my GP should definitely have followed up on my PSA more often. If he had, I would have hoped I would have got an MRI scan earlier, but I don't know.

After the PSA result, it was obvious there was a large change and the hospital arranged for an MRI scan pretty quickly. As a result of that I had a TP biopsy (my previous TRUS biopsy had been negative, but that was years earlier), which confirmed I had PCa, 3+4.

While I now know that they should have monitored me more regularly, I am more relieved that it was picked up when it was (as a result of a blood test for a different issue), otherwise things might be very different.

User

Posted 06 Nov 2021 at 00:36

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

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

User

Posted 06 Nov 2021 at 00:50

NICE 2019 updated protocol for AS - paragraph 1.3.9

https://www.nice.org.uk/guidance/ng131/chapter/Recommendations#localised-and-locally-advanced-prostate-cancer

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

User

Posted 06 Nov 2021 at 07:59

Thanks Lyn.
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.

User

Posted 06 Nov 2021 at 09:26

Notwithstanding Lyn's comments, if I was you I would want to see more action being taken.

My original biopsy in June found only 3 out of 13 cores taken were cancerous (all 3 were from the lesion area) and yet in September, when my PSA had increased from 5.76 in April to 6.01 in September, 16 of the 19 cores were found to be so. It is not as though the cancer had grown throughout my prostate in 3 months, it was already there but had not been found. Although the grading of cancer was exactly the same, it was enough for the consultant to advise that I should be taken off Active Surveillance ( I was only on it for 3 months) and to decide on a course of treatment.

Edited to add: The grading of cancer has been known to change once the prostate has been removed and a full blown histology has taken place

Ivan

Edited by member 06 Nov 2021 at 09:29 | Reason: Not specified

User

Posted 10 Dec 2021 at 11:34

UPDATE
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.

User

Posted 10 Dec 2021 at 11:57

It seems your current hospital is not capable of providing Active Surveillance to the expected standard.

This may mean asking to be referred somewhere else instead to pursue Active Surveillance. If you are going to get referred elsewhere, you should probably consider one of the main cancer centres, if there's one within your acceptable travel distance.

You could go and discuss this with your GP - you appear to know what's expected of a centre providing Active Surveillance (which your GP might not), but your GP may know what other good cancer centres are in your region.

Also, there's an Active Surveillance Online Support Group, and they may be able to suggest the cancer centres which handle AS well.

User

Posted 10 Dec 2021 at 12:13

Thanks for that, Andy. I've now signed up to join the group.

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.

User

Posted 10 Dec 2021 at 12:19

Originally Posted by: Online Community Member

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.

Start by discussing this with your GP. I think either they, or your current hospital can refer you. If you're in England, you can be referred to any other NHS hospital willing to accept you. (I think the same applies for Wales and Scotland too.)

User

Posted 10 Dec 2021 at 12:55

I'm in Yorkshire.

User

Posted 10 Dec 2021 at 13:14

Originally Posted by: Online Community Member

UPDATE
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 am one of the least expert people here, speaking only from my personal experience, but the advice above looks good to me. My early experience with PCa included an MRI scan that was inconclusive, a DRE that showed up nothing when I had a psa of 11. Despite this relatively innocuous data a multi-core [40 or so] transperineal biopsy came up with a Gleason 9 and a great deal of detail about the location and nature of the cancer within my prostate.

It looks as though your Dr would be willing to offer you a biopsy, if not an MRI scan and if that's what they're offering maybe you should take them up on it.

Edited by member 10 Dec 2021 at 21:48 | Reason: Not specified

User

Posted 10 Dec 2021 at 14:16

Certainly Scans dependent on quality and effectiveness of interpretaion but not 100% reliable. Biopsy results expected improved if suspicious areas identified by MRI. Interesting that the generally acknowledged top Focal man in the UK says he would rather have one negative MRI than two negative biopsies.

Barry

User

Posted 10 Dec 2021 at 14:59

My friend in his seventies has been on active surveillance for five years, and he insists on hi-res 3T MRI scans annually, together with regular PSA tests, and a meeting with his consultant every year. He pays privately.

Why should you accept anything less?

Sign up with a specialist PCa cancer centre, and ditch your current hospital, as frankly, they are putting your life at risk!

Best of luck!

Cheers, John.

User

Posted 11 Dec 2021 at 18:15

I can’t afford to go private.

I’ve already paid for the NHS.

User

Posted 11 Dec 2021 at 22:12

Something is driving a significant PSA growth, PSA over 10 on AS is considered a significant additional risk.

I would've inclined to tell them you want radical treatment if you can't have an MRI.

User

Posted 12 Dec 2021 at 02:40

In your shoes, I would want to be transferred to a more proactive hospital. Yorkshire being the biggest county in the UK, Leeds which has a good reputation, might be too far for you but I would have thought that there must be others. Suggest you discuss with your GP.

Barry

User

Posted 12 Dec 2021 at 03:56

Originally Posted by: Online Community Member

I can’t afford to go private.

I’ve already paid for the NHS.

I wasn’t suggesting you go private. Strive for the same level of care on the NHS.

Cheers, John.

User

Posted 12 Dec 2021 at 11:17

Not everyone is suited to AS and it doesn't seem that it is working for you if you don't trust what your doctors are telling you. Perhaps it is time to say that you want treatment.

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

User

Posted 12 Dec 2021 at 12:36

Sorry Lyn, but you've read that completely wrong.
I'm not anxious about being on AS, as such, but I am concerned when I'm told things like - I can't have an MRI scan due to lack of resources, but I could be offered treatment. It makes no sense.

I'm sorry to quote you again, but as you said earlier "I can't see how it is 'active' surveillance without some pictures of what is happening inside" and I completely agree with that. But I just wondered what was normal. I want to delay having any treatment as long as possible, provided that doesn't make things worse. I'm rather hoping that I eventually die with Prostate Cancer as opposed to from it. But who knows?

I'm just trying to establish:

1) Whether other health authorities do MRI scans more regularly and

2) Whether people find that PSA tests on their own are enough to monitor progress of the cancer.

The answer to the last point seems to be that in the main, people don't think it is enough to rely on PSA tests.

I still don't have a clear answer to what other health authorities do though. I was rather hoping that lots of people were on AS and could share their experiences of MRI's being offered, or not.

I'm going to wait for the written report of my consultation and will then try to get an appointment with my GP to discuss options for other areas.

In the meanwhile, if anyone has any information on point 2 above, it would be greatly appreciated.

Thanks for the advice so far.

Edited by member 12 Dec 2021 at 12:39 | Reason: Not specified

User

Posted 12 Dec 2021 at 13:42

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.

User

Posted 12 Dec 2021 at 13:54

They have told you that your previous PSA rises are in line with your large prostate. Your most recent PSA was slightly lower than the one before; PSA going up and down is associated with BPH not cancer. Your most recent mpMRI found no change in the tumour size from the first one; if you are imagining that a significantly enlarged prostate is because a huge tumour is growing and making the prostate bigger and bigger, that isn't what usually happens and not from a small stable focus the last time you were scanned. Scans can bring their own risks and as I posted above, you have had the two scans recommended by NICE, followed by a small fall in PSA. If your next PSA test shows another rise, I would ask for another scan. I would also be asking why there has been no annual DRE although I suspect they will say that is to do with Covid.
Ultimately, for AS to work you have to be able to trust the medical team.

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

User

Posted 18 Dec 2021 at 07:39

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.

User

Posted 18 Dec 2021 at 07:53

Thank you Paul.
As you say. your PSA jumped similar to mine, but you were given further MRI scans.

I'm being told that my increasing PSA is as a result of an enlarging prostate, although my latest increase in PSA cannot be gauged against prostate size, because they refuse to do another MRI.

Do you know what size your prostate was at each scan?

Good job you had the further scans.
Good luck with the operation.

I'd still be interested to hear from others about whether and when their health authority are willing to do followup MRI scans.

User

Posted 18 Dec 2021 at 17:20

Hi Ian

Sorry I don't know what size my prostate was at each scan. If I get chance to find out I will ask but that is probably unlikely to happen.

My consultant did say that my prostate is large and that, even if I didn't have cancer, some intervention may have been necessary to prevent problems with my waterworks.

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