Focal HIFU

So a late PSA test with all the COVID 19 issues. Booked on Monday at local GP. 

It’s that time again to look at my seemingly perfectly healthy and active 57 Hubble and have to acknowledge that life may be about to go off the rails ..  again

Well our first experience with ringing GP for PSA results went like this:

’ I am not medically trained so pleased don’t ask me the number; all I am allowed to say is the result is ‘normal’.

Had to smile, we asked for a hard copy in the post! 

But seems you spoke with receptionist? Every time I ask for my PSA result from the receptionist I am told 'normal.' The receptionist has just gone by the values by age shown on the result. I then tell her that these are for somebody who has not had or is not being treated for Prostate Cancer. I request a printed copy to check the precise figure. Incidentally, on two or three occasions I have been told the information cannot be given to me until it it has been seen by my GP which means calling at the surgery again a day or two later.

Hope you can tell us the result was good Clare.

Edited by member 05 Jun 2020 at 01:04  | Reason: Not specified

Chris, I train accountants who struggle with basic maths these days!  Chris I Hope you are OK in these tricky times.

Barry now we have the print out it is 1.31. Lowest after the FLA was 1.32.

However no consult or reply to emails either ( normally A gets the test in the morning and we have lunch and see consultant who gives the result and the reassurance ( or not!)

So it’s down, he still has his prostate but I guess it’s just a ‘new baseline’ from which to watch the trend.

Hoping for a zoom consult as heard nothing and just organised this test locally when no reply!

So taking it as a positive but will want the next PSA test  ‘ on the nose’ in September. Three and half years since diagnosis. No symptoms  and other than recovery from treatments no impact on QOL but still recognise we want to know if another reoccurrence is happening. 

Barry did you decide whether to have any more treatment? Hope all is good with you.

Andy 62 thanks for the tip. The  GP were great so may stick with them for testing and just ask if they can set up  access to results on their online system like Chris and yourself.

1.31 .. taking it as positive ...  post FLA his PSA kept falling throughout 2017 and 2018, it was just 2019 that saw the increase and the new tumour.

Thanks all

Clare

Thanks Barry, definitely seeing it as a new baseline and appreciate the advice re expecting fluctuations.

It sounds like you are doing the right thing with your ‘grain of rice’... keeping it under careful watch makes lots of sense even without the additional difficulties of Covid-19.

Great to catch up

Clare

Today saw A’s 6 month PSA test and MRI scan post focal HIFU. This appointment came in for a couple of weeks short of 6 months and with the COVID delay on the 3 month one it is the closest PSA’s test he has had.

So mask on he took the train to London and walked to the hospital for the blood test and MRI. Most wobbly I’ve known him after. He said the mask wearing whilst in MRI with contrast needle made him unusually claustrophobic. 

Home now and haven’t asked for results as we have consultation on Monday so may as well hear it all then. 

Just diarising as ever. Have a good weekend all.

Thank you Ange x

Thank you TG, great advice, he hasn’t anticipated the addition of a facemask during an MRI could have an impact. Also he said the contrast needle was just painful throughout which he hadn’t experienced before.

Nothing of course compared to so many so reporting rather than complaining. We should know tomorrow whether more treatment is recommended  or if the van is once again kicked down the road as a minimum positive outcome

he hasn’t mentioned the music! I must ask! My one and only MRI ( brain and full spine) I declined and offered sedation as I was convinced I had no claustrophobia and could live with my own head happily for some time! I actually pressed the panic button 3 times and had to be talked into keeping with it rather than losing what they captured .. not quite the person I thought I was! 

Clare

Hi Chris

Always good to have a catch up. You are indeed a scan guru and even though I don’t have a penis the thought of injecting it makes me wince! ( I was unable to prick my thumb back in the day when that was considered a normal part of a biology lesson at school in the 1970’s! 

It sounds like A has been lucky with his contrast cannula before and this one was more the norm! 

Sorry to hear about the fatigue :( :( 

Hot weather does not help with this I guess.  Hmmm..

Another scan does sound like a  very good idea despite all your history and I know you have a top consultant who also seems to see you as an individual not just a number.. 

Thoughts with you, the build up to scans and consults are just rubbish times I know  :( 

On the positive side fab that Southampton have such top scanners as well as your consultant. Also such a fantastic part of the world. We are hoping to do a trip to the New Forest in August as it’s a real favourite. 

Let us know how 27th goes Chris.

xx