Does AS increase chances of bad after effects

Hi Lyn

Thanks for the info, I have not been given my % yet what do you think would be an act now %

Thanks both John and Gordon

What is becoming quite clear the more I read is depending on who you talk to specialist wise, this will result in what 'best advice' your given which will normally be their specialist subject only and the decision as to which direction you go in is down to yourself at the end of the day which is really scary!!!

I suppose the route to take is best judged on people with similar or the same starting point numbers and read as many start to current situation stories as possible, with this in mind John is the friend you mention active on this forum or contactable?

Thanks again in advance to anyone who takes the time to reply

Ian

My friend undergoing AS is on here very occasionally, and his nom-de-plume is KeithP.

Cheers, John.

Edited by member 03 May 2020 at 13:53  | Reason: Not specified

Having been over three Years on AS, I find it a little confusing that the NICE Guidelines actually reduce the level of monitoring as time goes on for patients like myself with an initial 3x3 Diagnosis.

I have only ever had one MRI in February 2017, and after my next checkup in June, I have been told they will then go to every six months Checkups at which I usually have a DRE as well, I have been told that I will not be offered another MRI or Biopsy unless my PSA or any other symptoms raise a red flag.

This is a concern to me, as I feel like I’m a little bit in limbo waiting for something to rear it’s ugly head before they will then investigate, when it could already not still be a localised cancer.

I have also only been examined by a specialist nurse for the last two years with the only question at every checkup of “is everything okay”, well I don’t know if everything is okay, what are people on AS with no clinical knowledge of Prostate Cancer supposed to look for??

NICE Guidelines: Year 2 and every year thereafter until active surveillance ends.

Every 6 months: measure PSAb

Throughout active surveillance: monitor PSA kineticsc

Every 12 months: DREd

a If there is concern about clinical or PSA changes at any time during active surveillance, reassess with multiparametric MRI and/or re‑biopsy.

b Could be carried out in primary care if there are agreed shared-care protocols and recall systems.

c Could include PSA density and velocity.

d Should be performed by a healthcare professional with expertise and confidence in performing DRE. In a large UK trial that informed this protocol, DREs were carried out by a urologist or a nurse specialist.

Thanks Lyn, I can remember asking the person who did the scan and it was a 1.5 Tesla MRI which I presume is the normal one, there are two MRI machines at my hospital and both are 1.5 Tesla, I had a second TRUS biopsy in April 2018 which again was 3x3 Gleason grade, everything since then has been a PSA blood test and Dre at the appointment.

Would I have to request to see the Urology Consultant to argue the points you have highlighted?

Edited by member 03 May 2020 at 22:04  | Reason: Updated

Tesla 1.5 is used for old style MRIs and mpMRI and meet the PROMIS standard promoted by PCUK and others. Very vew hospitals in the UK have Tesla 3 and I think there is only one place that has Tesla 7. 

So you may have had mpMRI and you may not - worth clarifying with your nurse specialist, I think, before you decide whether to challenge the urologist. 

Quick update to the points Lyn and Bollinge made.

The MRI done at my local Chesterfield Royal Hospital was not upto Promis standards, confirmed by Prostate Cancer tracking page https://drive.google.com/open?id=1a732RFPeoTWJTwF0mGhAAcb_GFz4RGCp&usp=sharing

I asked the specialist nurse who did my phone review two days ago, about getting another MRI due to the fact I hadn't had one since February 2017, she said she would ask the Consultant and get back to me. They got back to me today and said that I could have a scan at the Royal but it would not be upto Promis standard, and that if I wanted an mpMRI with contrast I would have to be referred to another hospital by my GP, where my care would then be moved to the new hospital. The nearest mpMRI is the Northern General Hospital in Sheffield about 30mins away. They are ringing me back Tuesday morning to see what I want to do.

I would have thought the Consultant would just refer me for the scan and then send the results back to my GP or Consultant at the Royal!!

I've contacted my GP about all this to see if this is the correct procedure, it seems a bit extreme to have to transfer to another hospital just to get a different type of scan. I'm waiting now for a call back from the GP.

Either way my dilemma is which scan do I take and is there is any significant benefit to having an mpMRI opposed to a standard MRI as my cancer initially was a very low grade 3x3, my latest PSA test on the 10th June 2020 was 4.98 down from 5.7 four months ago. I've spoken to prostate cancer UK nurses and they are inclined to maybe agree to a point with my current consultant, that my PSA is stable with no significant change since February 2017 at 4.6 with the 5.7 being the highest reading I've had.

So in short I can get a mpMRI but will need re-referring according to the hospital, yet to be confirmed.

Edited by member 11 Jun 2020 at 19:08  | Reason: Not specified

Got the results from the 1.5 Tesla MRI as follows:

All seems good, but could you translate as to what all these terms mean please?

"MRI Pelvis Prostate comparison made with MRI 5.2.2017; Prostate Volume 57mls. PSA Density 0.08 ng/mL.

BPH of the Transitional Zone (PI-RADS 2).  No significant PI-RADS lesion in the Transitional or Peripheral Zones.

Normal Seminal Vesicles.  No Pelvic lymphadenopathy.  No Focal Bone Lesion.

Comment: No Significant PI-RADS Lesion. No change from 2017"

Back for next check up in 4 months time.

Edited by member 05 Jul 2020 at 19:16  | Reason: Not specified