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Focal HIFU

User
Posted 13 Jul 2020 at 12:52

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! 

User
Posted 14 Jul 2020 at 08:51

So to quote another member ‘ that was not the plan’

Not good news yesterday. PSA back at 1.6 and MRI showing something suspicious at the Apex

Not what we expected to hear. GP was great getting urine form and pit sorted immediately. A has just dropped a sample back but neither of us holding out hope for an infection. 

Third biopsy booked on 31st July which means A going into self isolation from Friday. As he can WFH that’s not the end of the world. 

We are both a bit down this morning tbh ( knowing we have lots of blessings to count but still)

Absolutely reporting as is. Clearly know all choices made have been our own.

 

Clare

User
Posted 14 Jul 2020 at 10:53

So sorry to hear your news Clare. Fingers crossed for A’s biopsy results.

Take care both,

Angexx

User
Posted 14 Jul 2020 at 11:42
Sorry about knock backs Clare. If urine tests should prove negative were you told that further PSA tests would be done and depending on results whether biopsy of suspicious area undertaken and possibly be radiated or whether Prostate could be removed? I would like to know and prepare for my options in this situation. Do you know that the HIFU worked on the area where it was directed? Was that suspicious area seen in MRI prior to the HIFU? Sometimes, what are considered insignificant tumours are left and just monitored to check whether these become significant. Clearly, 'A' can't keep on repeatedly having focal therapy every time a further possible tumour is identified. In your situation, before long I would want a full appraisal of the situation and what options there are.
Barry
User
Posted 15 Jul 2020 at 22:52

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

User
Posted 15 Jul 2020 at 22:59

Originally Posted by: Online Community Member

So sorry to hear your news Clare. Fingers crossed for A’s biopsy results.

Take care both,

Angexx

Thank you Ange. We are coming round to the likelihood his PCa is not quite the pussycat type we thought on first diagnosis! 

x

User
Posted 16 Jul 2020 at 01:51
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.

Barry
User
Posted 16 Jul 2020 at 11:43

Sorry to hear you are going through this again. Hope you get a timely action plan. I highly recommend the Prof Whocannotbenamedonhere if you go down the RARP route. Still no regrets on that route and exceeded expectations on outcome. 

Keep us posted!

Simon 

User
Posted 16 Jul 2020 at 19:58

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

User
Posted 16 Jul 2020 at 21:07
Sorry to see this Claret; on the up side you have managed to delay the side effects of radical treatment for 21/2 years and trodden a path that may help newly diagnosed men in the future.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 Aug 2020 at 23:09

Thank you Lyn, yes we are pleased with the 2 1/2  years we have had since initial diagnosis.

Biopsy number 3  yesterday and he is home now. Self isolating for 2 weeks was worse than the biopsy so lovely to ‘have him back fully!’

He has now seen the MRI which does have a very small but quite ‘white spot’. She took ‘ many samples’ he says. I say ‘ how many? ’, he says ‘ oh I didn’t ask!’ ... 

Results 9am Thursday is quicker than I remember fon the previous two. Biopsy 3  is showing no bruising  or pain and all is functional unlike biopsy 1 where he was black and blue and recovery took some time.

Back to waiting! 

Clare

 

 

User
Posted 06 Aug 2020 at 09:28

Just taken the call from the Prof re A’s third biopsy..

So interesting. Hmm

They have found a very tiny cancer. Too tiny to grade apparently ( I didn’t know they could diagnose it but be too small to determine a Gleason pattern.

So no rush to do anything and a further HFU to hit this spot is looking possible.

MDT have not met yet but it does appear we have options - including to watch it.

En route to Dorset and taking this as better news than we expected.

 

Clare

User
Posted 06 Aug 2020 at 13:26

Sounds like relatively good news as you say. Enjoy the break. Better to be on the roads today I suspect than nearer the weekend :-)

TG

User
Posted 21 Aug 2020 at 17:42
Thanks Tech Guy

It was great to get away for a break.

So we had the MDT (UCLH team) report today. A further HIFU was approved to the apex as long as its done quickly, Apparently a lot of discussion as A has quite an unusual treatment history. The surgeons agreed their was no rush for a removal and the 2 focal professors agreed a redo needs doing promptly due to it being in the apex.

So booked for 4th September...

Good news is rules have relaxed so social distancing rather than self isolation this time (except for last three days after the COVID test)

Well they say third time lucky!

Clare

User
Posted 21 Aug 2020 at 19:04
Hope that further HIFU nails it for 'A' .

It seems the tumour is very small like mine, (as a small grain of rice I was told from MRI). Before doing my last biopsy, the surgeon told me that being so small he would do well to hit it but in the event managed to do so as the Grade given was 3+4 as has been in previous biopsies. Interestingly, my PSA fell thereafter and it seems to me it was likely that this was because some of the tumour was removed in the core, smaller tumour less PSA. One wonders if a considerably larger needle could be used to remove all of the tumour but perhaps this is technically too difficult to do.

Barry
User
Posted 21 Aug 2020 at 21:26

Thanks Barry

it is showing up on the scan in the apex but described as tiny. There is space for a margin to be taken she said today.

Love your thinking re the bigger needle to basically take it out with the core! It’s probably never been thought of!

Back to London for us. Glad we got a holiday in before this! 

Hope you are ok and that A gets a result with this one!

Prof E was in the meeting too apparently.

Thanks

Clare

 

 

User
Posted 22 Aug 2020 at 06:26

Prof E and his team are at the top of their game. Hope everything goes well and you can get on with relative normality after surgery. 

User
Posted 26 Aug 2020 at 16:55

Hi Clare

I notice that A is having a HIFU the same day as myself at UCL hospital.(4th September). Whilst he is on his 2nd HIFU (3rd focal) this will be my very first treatment. Your posts have been very helpful to me and I now know more what to expect(I think!)

I hope this time , for your A ,the HIFU does the job, you both have many more years ahead of you.Although at my age they say it ‘should not be aggressive’ like A, my father died of PCa .

I  see that he is also Gleason 7 and you mentioned “it is showing up in the scan as in the Apex”. This interests me,( although I don’t understand), as in my second biopsy, one core at ‘Right PZ Apex Medial’ had tumour of 2mm (Gleason 4) which I assume will be burnt out.

I will be getting round to asking the community for guidance for what questions I should ask on Friday week on my ‘ Waiting HIFU at UCLH’ but thought  I would let you know that whilst we will be social distancing 

 I may well see A next week.

 

Bill

 

Edited by member 26 Aug 2020 at 17:01  | Reason: add word

User
Posted 26 Aug 2020 at 22:42

Hi Bill,

Thanks for the post. I guess you are on full social distancing  as well?  A found the need to self isolate for the 2 weeks before his biopsy really tough so being able to do this two weeks together is a big improvement.

Saying that we are not confirmed for 4th as I believe it’s a big list due to a backlog, we were expecting to hear a definite yesterday or today but nothing so will chase again tomoz! A’s prof said they agreed it needed doing sooner rather than later so we have a hotel booked to do the last three days after the covid text,isolated and will stay in London until the catheter is out

My  advise is to ask for instigal for the catheter if they don’t offer it to you. It really really helped the catheter days! Fitted boxers by day and commando at night seemed to be the most comfortable! 

It will be weird for you guys having to go it alone on the day as before I’ve been there for support but not this time. 

They are the focal experts and as promised A had no side effects from the treatment in January .. a really quick recovery.  

Not long to go now and you are in safe hands. A big list is interesting as so few on here opt for it but clearly in the real world people do! 

Good Luck, I’ve found your thread now so will follow with interest

Clare

 

User
Posted 26 Aug 2020 at 22:58

Originally Posted by: Online Community Member

Prof E and his team are at the top of their game. Hope everything goes well and you can get on with relative normality after surgery. 

Thanks Simon

Yes we are back to wanting it done, get the catheter out and forget it for a few weeks at least! However I guess another blooming MRI with a mask with be the next station stop after catheter is out! 

Hope you are keeping well

Clare

 
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