No more MRI scans?

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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