Focal HIFU

Pleased HIFI went well and look forward to reading progress reports.

3rd night with catheter was almost uneventful other than a lot of whimpering around 6.00am when A apparently got a semi Nd that with a catheter in was not welcome apparently! This  morning A is walking a lot less like John Wayne but still slow.

4 nights with the catheter before TWOC is one more than the FLA but could be due to today being a Sunday.

We are back to the hospital for removal at 10.00am tomorrow and TWOC ( trial without catheter) procedure has been explained and sounds the same as Florida experience in that help has been taught to self Cath in case and being given a pre lubed self Cath kit.

Difference with meds in that A was already on a steroid in Florida ( prednisone) but no mention here in London plus was immediately on the 5mg cialis ( for blood flow apparently) however after the whimpering episode probs best not to have it plus he was affected by the side effects so stopped early last time.

So continuing with antibiotics, diclofenic and paracetamol atm

other difference is face to face time with consultant is lower here. Other than brief chat after anaesthetic wore off that all went well we are not due to see the Prof till 10th Feb.

Clare

4th night with catheter completed. I was woken after midnight with what I thought was A singing but again it was whimpering due to unwanted blood flow causing pain!

otherwise uneventful and the TWOC went well with him passing 400 ml immediately and the bladder scan being clear. So repeat instructions given on how to self Cath and a pack given we had lunch with him feeling much less nervous about being knocked and we are now on the train home with our ‘focal HIFU mini break’ over!

MpMRI next on Thursday.

Clare

Thank you TG. Yes good to know the blood is flowing but definitely not recommended with a catheter in..he is tender to pee now it’s out but 100% continent on the train journey and through coughs.

so far so good. Let’s hope the MR is good news..

Yes Barry a very good point as ever. This is just A’s personal experience.

First night with no catheter was uneventful and no retention was a relief as after the FLA having to self Cath in the night was stressful.

a is finding it is stinging when he pees however and he didn’t have that before. He is on his last day of antibiotics  and worried it’s an infection or is it just abrasion from the catheter? 

Anyhow up early and planning to go to the Villa match this evening. I will make him have an afternoon nap!

thanks

Clare

Edited by member 28 Jan 2020 at 09:22  | Reason: Not specified

First consult post MRI and just short of three weeks after the procedure.

She is happy with the scan which shows the necrosis in the expected area. She took a wide margin apparently including a seminal vessel.

First PSA is booked in at the 3 month point in April.

No incontinence, no getting up to pee at night and he stopped Tamoulisin 3 days ago with no impact on flow so all good there.

Recovery of functionality has been quicker than after his 46 core biopsy or the FLA. However accepting use of a tablet means we are not comparing like with like yet. Not fully recovered without a tablet. 

Second week back at work he is reporting feeling more tired than normal so I am nagging him to keep his diary light at least! 

So next step April PSA with next MRI at the 6 month point.

Interesting! She dictated the letter whilst we were there this morning so when I get it I will update. 

She did not say it had spread into the vesticle  ( she is consistently said the new tumour was contained) but that she had treated beyond the cancer. Maybe if it’s a confirmed spread it’s too late but whilst contained the vesicles tissue can be zapped? 

Her tech was playing up so we didn’t get to see the Post MRI and again whilst a very professional consultation compared with the time and detail we got from the Sperling centre it was much less detailed a talk through. 

i will read the letter with interest when it comes. Otherwise we got an appointment for an April PSA and consult and told another MRI will be taken at the 6 month point. No PIRAD score was given. We did ask but she said it was too soon after treatment to be graded.

She gave A a private prescription for viagra but told him he should be able to get it prescribed by the NHS via the GP due to the prostate cancer.

His recovery is much quicker than after the FLA which was on a much bigger tumour of course.

Fingers crossed you get sorted Barry

Regards

Clare

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 02:04  | 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

Thanks Lynne

i had to wear a mask at the hairdresser and agree it was vile ( hats off to the medics working in full PPE)

i shouldn’t ask about your brain but mine is a left temporal shunt fitted when I was 35 following rupturing an arachnoid cyst i didn’t know I had on a  flight to New York.

only the one MRI for me in the USA .. monitored via CAT scans.

 Couldn’t but be interested in your comment! 

Back to PCa ., 5pm zoom consult. I am not being particularly effective today! 

Thanks Barry

the suspicious area is in the area he had the HIFU. It is close to the Apex and she was non commital re next steps other than:

1. Get an immediate urine test ( done - hope to get results tomorrow but not expecting that to be the issue

2. Got added to 31st July biopsy list ( he has to start to self isolate from Friday as hospital is COVID free. 

She wants biopsy results before discussing next step but we are accepting the likelihood that an RP will be recommended and if so will accept it - we have met the surgeon experienced in removal following a focal treatment and he uses Neuro- safe so hopefully nerves can be saved in full confidence.

we have known for 2.5 years that this maybe where we end up and heigh- ho. It’s a very quick increase from 1.31- 1.6 . A still is 100% symptoms free. He was in office for first time today which he enjoyed. He is 57, fit and healthy and it seems weird to think we have to injure him to keep him safe.. 

So if urine test is negative my understanding is no further PSA but direct to biopsy. Do you think we should ask for a confirmatory PSA? 

Thanks Barry

Clare

It seems to me that CM feels it is highly likely that the suspicious area is cancerous and I don't think 'A's PSA moving up or down slightly before the biopsy would make any difference. However, should the urine test prove to be positive, it would seem prudent to treat this and then have a PSA test. The biopsy could be deferred until this was done and it could be established whether the infection was responsible for the rise.

However, I would try to get confirmation, (as well as can be ascertained from biopsy following on from the MRI), whether the cancer is still well contained so a RP stands a good chance it would remove it all.

For some, focal treatment does the job or for longer than it worked for 'A' and it has been given a good chance but I understand there is a limit to the number of times a man is prepared to get tumours treated piecemeal.

Thanks Simon

The prof you mentioned and the alternative approach is on my list of research topics! A has had 2 focal treatments and the guy who specialises in removing ‘focal fails’ does have great stats.

Barry - good point we need to know if it’s still contained. It was us who pushed for the earliest biopsy date due to a break planned early August so she didn’t seem concerned if we had waited till September. I think this question is worth an email to her and also we haven’t had the MRI report. 

So today ( both WFH)  we walked to our local for our first post full lockdown lunch. Beautiful weather, lovely lunch. Walking back past the GP reminded us we needed to ring for results and did so as we walked back. As expected the urine test has come back negative so self isolation begins tomorrow heading for the third biopsy. He rang each of our children after we heard no infection. We are very lucky to have a fantastic ‘pigeon pair’ and blessings are very much being counted! 

Clare