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Focal HIFU

User
Posted 02 Aug 2020 at 00:09

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 10:28

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 14:26

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 18:42
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 20:04
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 22:26

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 07:26

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 17:55

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 18:01  | Reason: add word

User
Posted 26 Aug 2020 at 23:42

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 23:58

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

User
Posted 27 Aug 2020 at 12:01

Thanks Clare

We have been at home , isolating for the whole 5/6 months. Not once shopping or eating out just taking deliveries. Enjoying the garden in mostly good weather. Cycling in the fields for exercise. Best at our age.
I presume you had to work and if A is self isolating you unfortunately had to stay apart. That was tough.

Hope he gets the HIFU on the 4th, the waiting is terrible, difficult making plans and you have booked a Hotel as well!

Thanks for the advice to ask for instigal. Yes my wife will have to drop me, drive home to Herts, and return later to pick me up. 

Will get around to making a post on my thread soon.

Good luck to you both.

Bill

 

User
Posted 28 Aug 2020 at 13:50

Hi Clare

Hope you can enjoy the bank holiday and hope you get things back to normal ASAP.

Goos this end. Bit of a run around getting my 9 month PSA test result but just came back as <0.006 so good thus far. 

Cheers

Simon

User
Posted 28 Aug 2020 at 14:56

Originally Posted by: Online Community Member

Thanks Clare

We have been at home , isolating for the whole 5/6 months. Not once shopping or eating out just taking deliveries. Enjoying the garden in mostly good weather. Cycling in the fields for exercise. Best at our age.
I presume you had to work and if A is self isolating you unfortunately had to stay apart. That was tough.

Hope he gets the HIFU on the 4th, the waiting is terrible, difficult making plans and you have booked a Hotel as well!

Thanks for the advice to ask for instigal. Yes my wife will have to drop me, drive home to Herts, and return later to pick me up. 

Will get around to making a post on my thread soon.

Good luck to you both.

Bill

 

Sounds idyllic Bill. All confirmed now for A at 3.30pm on Friday 4th. COVID test / urine tests to be done at the hospital on the Tuesday.

We do both work from home but had some work being done in the house ( we moved in lockdown into a house with no wardrobes or bookshelves) so decided we really wanted the fitting done so split the house. It was a hard two weeks. Much better doing it together this time!

A bit far for us to travel so yes we are booked in for a second 'HIFU mini-break'!

Hoping that the tiny bit left just needs mopping up! Ever the optimists!

Enjoy the bank hol

We will have to 'compare notes' after

Regards

 

Clare

 

 

User
Posted 28 Aug 2020 at 14:59

Originally Posted by: Online Community Member

Hi Clare

Hope you can enjoy the bank holiday and hope you get things back to normal ASAP.

Goos this end. Bit of a run around getting my 9 month PSA test result but just came back as <0.006 so good thus far. 

Cheers

Simon

Really great news Simon... You really owe your surgeon a drink I think! It looks like a blinder was played on the day  of your op!

Enjoy the bank holiday

 

Clare

User
Posted 28 Aug 2020 at 18:04

Indeed. The Prof Whocannotbenamedonhere is a legend. Initially after surgery neurosafe frozen sections indicated potential focal involvement near the base. He did some Picasso grade work in terms of bladder reconstruction and taking a precautionary wider margin. Histology came back ~ 7 days showing all margins were in fact clear under paraffin stain. So fingers crossed the undetectable PSA’s  continue as I’m mindful things can return years later. Living for the moment more prominent than ever 🍻

Edited by member 28 Aug 2020 at 18:06  | Reason: Not specified

User
Posted 05 Sep 2020 at 11:05

Hi Clare

Hope your A’s HIFU went as well as mine yesterday. I was first on operating table @ 9 after seeing my consultant who confirmed would do areas on right side as In my stream (Not proposing to continue stream as it is ‘waiting HIFU’) which happy no longer. Will have to wait til JANUARY to get psa.

I am pain free so far in bottom and only have pinches in penis occasional.

I could have done with the group talk on the catheter which A didn’t need. Up half  the night Worrying about it. Ok now once got gravity sorted. Asked about Instigal but no joy. Had been given plenty of the bigger (200) night (one use only) bags but was getting to over 150 in a few hours. Have been drinking only water since midday before the op. Consultant advised soft stalls required.

Hope you get the results you want.

Bill

 

User
Posted 05 Sep 2020 at 20:11

That’s good to hear Bill. A got HIFU’d ( again! ) yesterday too and she said it went well for fingers crossed for you both.

Discharged with his catheter, antibiotics, diclofenac, tamsulisin and lactolose.

He has got instigel ( had to ask and maybe as it’s going on a BUPA bill they are more chilled!)

He had more pain yesterday when he came round than last time ( feeling like he had a full bladder despite being on a bag). It went off in a couple of hours and he was moved to a flip lock catheter with a night bag and stand.

 I met him outside the hospital which was strange but nice to be out of self isolation!  

He feels at bit bloated, is a bit bunged up  and had a bit of blood at the tip earlier today but urine is a good colour so just taking it easy, resting today with a pre dinner short walk and back to bed.

TWOC booked in for Monday and MRI a week after that on Monday 14th. 

Fingers crossed for you both

Hope you are resting! 

Clare

 

User
Posted 06 Sep 2020 at 04:04
Am hoping for great results for 'A' and Bill as we all are.
Barry
User
Posted 06 Sep 2020 at 14:24

Thank you Barry.  It is not too unusual for a second HIFU but still some go on to needing a radical treatment but we are definitely fingers crossed that this may have sorted it... 

Taking things easy but we visited the Wallace Collection  after breakfast today. It is round the corner from where we are staying and fascinating. 

Back for a rest, trying not to let him overdo it. 

User
Posted 07 Sep 2020 at 22:38
Three nights with catheter went quite quickly and TWOC today went well so headed home tomorrow.

As ever the first pee on removal of the catheter was painful and he still feels at bit bloated but had a nice walk and he is feeling good.

As ever I like to keep a report!

User
Posted 07 Sep 2020 at 23:00

Thanks for keeping us informed. I hope this one finishes it off, but even if it doesn't, A has managed to push the radical treatment a few years down the line. 

Dave

User
Posted 16 Sep 2020 at 02:27

Thank you Dave, consultation on Monday. 

I am finding myself not wanting to answer calls/ answer texts from people who are asking how it went etc..  

Putting off replies as I just want to know what yesterday’s MRI shows and a knot of fear is growing .

As a result I had a big telling off ., note to self to reply to texts promptly! 
Been a bit of an ostrich this week and strange I can post here but not engaging well in my real world. 

Yes a definite knot of fear 

User
Posted 16 Sep 2020 at 07:54

Hi Clare

So sorry to hear how fearful you are while you wait for ‘A’s results. It’s this waiting that can get you down. My 6 months wait for my HIFU was worse for my wife and I than the op. No need to reply, I just wanted to show empathy . I have no symptoms just a wait like you to see if the HIFU has worked.

Bill

 

User
Posted 16 Sep 2020 at 13:17
It seems perfectly reasonable not to want to reply to people when you don't know the answer yourself so I don't think you should be apologetic about it. Ostriches are beautiful birds - do what is best for you, not for others.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Sep 2020 at 15:25

Good luck for A’s consultation on Monday Clare, have everything crossed for you both xx

User
Posted 16 Sep 2020 at 23:14

Thank you Bill 

This is the best thing about this community. People do understand the anxiety that comes with all this.  Whether it’s a regular PSA test result or post procedure MRI or waiting for a treatment... woah it can get to even the most grounded can’t it.

And then there’s the having no symptoms and having to have treatment anyway...

All the best. I appreciate the empathy. 

Clare

 

Quote:

Hi Clare

So sorry to hear how fearful you are while you wait for ‘A’s results. It’s this waiting that can get you down. My 6 months wait for my HIFU was worse for my wife and I than the op. No need to reply, I just wanted to show empathy . I have no symptoms just a wait like you to see if the HIFU has worked.

Bill

 

User
Posted 16 Sep 2020 at 23:26

Originally Posted by: Online Community Member
It seems perfectly reasonable not to want to reply to people when you don't know the answer yourself so I don't think you should be apologetic about it. Ostriches are beautiful birds - do what is best for you, not for others.

Aw thank you Lyn. Real low point yesterday. Clearly really naffed off my friend that I had gone quiet last week so got the full barrels over dinner. On the positive side A took my hand,  spelled ILY on my jeans and calmly at his most eloquent mellow self took my side. I don’t think I’ve ever loved him more,!

Yes you are right Ostriches are fab! 

User
Posted 16 Sep 2020 at 23:27

Originally Posted by: Online Community Member

Good luck for A’s consultation on Monday Clare, have everything crossed for you both xx

Thank you Spaniel. Really appreciate that xx

User
Posted 21 Sep 2020 at 19:45

The consultation happened by phone today and the consultant says the MRI shows no sign of the tumour.

there was palpable relief around including her!

a wide margin was taken she said and there is evidence of some collateral damage on the rectum which should heal in about 3 months she said so he needs not to get constipated. This is net an issue for A and he’s feeling fine so we are hopeful it’s minor.

 

The knot of fear is subsiding and back to monitoring

 

Thanks all

Clare

User
Posted 21 Sep 2020 at 20:59
That’s great Clare. Let’s hope that will be that but as you say, keep monitoring. Good both A and I have got our HIFU s out of the way before this second wave of the virus that looks imminent.

Good luck for the future.

Bill

User
Posted 21 Sep 2020 at 22:51
Great news
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Sep 2020 at 23:35
Cause for cautious optimism!
Barry
User
Posted 21 Sep 2020 at 23:43

What a relief for you both.  Really pleased for you xx

User
Posted 22 Sep 2020 at 11:36

Really good news.

Ido4

User
Posted 22 Sep 2020 at 20:42

Great news!

I trust a bottle of claret is open :-)

All the best

Simon

User
Posted 25 Oct 2020 at 01:49

Bounce for Benny

 

.. and to record a third complete recovery in the erectile function sense. No tablets necessary which is is surprisingly pleased about! I didn’t think the tablets were a big deal but apparently whilst happy they exist he is thrilled they are not as yet his norm! 

User
Posted 25 Oct 2020 at 06:20
Epic news Clare. May all your courgettes be marrows

:-))

If life gives you lemons , then make lemonade

User
Posted 26 Oct 2020 at 10:59

Always a joy to see good news 

 
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