Hello.

Hi AM

U say not currently referred so just wondered who decided to put u on AS.

Do u have any stats because that will help with advice given

Steve 

Hello Ivor

Welcome to our little club - I thought you would find your way here. I am sure you will find what you are looking for.

Kind regards

Brian.

Steve, 

Put on AS by Nurse at local hospital. PSA 13.7, stage T1c. 

I appreciate this is not significant.

It is very comforting to learn from this forum how others who are more advanced are doing well and the options chosen.

I found the NHS experience so far to be lacking and have lost confidence in my local hospital urology dept.

 As mentioned the advice I'm hoping for is how anyone has found care at RUH Bath Urology.

Ivor

Looks like T1c too small to show on a scan, presume you had a MRI but nothing showed up?

In which case AS is ok although bit puzzled by the PSA.

Steve 

Hello Again Ivor

I am so sorry that you have had issues with the NHS. I know they are under pressure but there is no need for either poor or bad service and you do need someone you can trust.

If there has been a specific issue you can always contact the hospital PALS (Patient Advice and Liaison Service) and raise the issue. If you do need treatment in the future you don't want to be travelling too far as fatigue is one of the issues the treatments for PC give you!!

I have been lucky with the NHS - although there have been delays in my treatment - all is well - you can read my journey by clicking on the icon of the beach.

Best wishes

Brian

PS - As Steve said above - that PSA is high - but as far as I am aware there is no upper limit for AS (I have been wrong before!!)

Steve,

MRI Scan showed grey area. 22 biopsy with local injection, whilst being used as training aid was not something to be repeated, 4 positive in one quarter.

PSA 11.7 Feb 22, 7.7 Jan 23, 13.7 Jul 23.

Although informed I would be on AS, months later I managed to get copy of MDT report which offered all options.

It's been a down hill relationship from start with little to no information. Learnt more in 48hrs reading on this site than 18mths with local urology.

If anyone has feedback for RUH Bath Urology please, I would appreciate it

Thanks

Ivor

Thanks for the info, it does help to help you.

Firstly I know what its like to have problems with hospitals, I had to change twice and I would suggest you consider doing that if unhappy, your GP can send u elsewhere.

As far as your details go , def needs watching and you should try to find out two bits from the MRI report.

Size of the tumour (s) in mm and location within the gland ie is it near the capsule edge.

Because if tumour over about 10mm and near the edge then AS may not be so good.

One would hope hope that they would spot that if the case anyway so no need to worry but def worth checking

Steve

Steve, Dug out MDT report to find info on MRI, first thing I noticed T2c, I took the T1c from the consultants letter but it looks like the T2c is correct, don't know if it makes any difference?

The MRI report ,

hi

So, this looks OK, still confined to the gland, not broken through.   Tumour size not particularly large.

See that this MRi  is from May 22,  so is it just  a PSA since then latest PSA 13.7?

If u have had no MRi since May 22 think I would push for one because PSA is slowly going up, still ok but needs watching.

Just to give u some of my history, I was on AS for 4 years, I started RT in 2017 when my tumour size was 13mm and getting near the gland edge. Also I did have a MRI every year and this is really how we could see the tumour increasing  from 3mm to 13mm

Just my opinion by the way, I'm no expert but I have picked up a lot of info in the past 10 years and still read  online about PC.

all the best

Steve

..

Steve, Thank you interpreting MRI.

Have asked about follow up MRI, GP laughed at me a said he had never heard of this and that they are unlikely to spend money on me with repeat MRI. Consultant not any better, he discharged me without explanation, only found out when I called to find out why he did not call for a planned phone appointment, to be told he had discharged me, no explanation, not the sort to trust with knife. That's why I'm asking about RUH Bath but would appear no-one has any feedback for this one.