Focal Laser Ablation

User

Posted 15 May 2017 at 10:01

Claret,
a tip from our urologist for your OH to deal with the drip at the end of each pee.
'The urethra has a small U-bend in it which traps a little bit of pee (google a side on image of male urethra) you can use your finger to push up and forwards from behind your balls, this will evacuate the small amount of urine left behind at the end of a pee and prevent the dribbles'.
Julie

User

Posted 15 May 2017 at 22:08

Thank you for the tip Julie.. I will pass this info on.. Much appreciated.

Lynn I couldn't agree more - as the data just comes from form filling at 12 months it would seem sensible to ask about medication etc used plus a bit more detail on their 'dark green zone' experience compared to pre procedure and to have all primary choices filtered into real time 'big data'. I would love to see PCUK push for a big data project on this

User

Posted 15 May 2017 at 22:43

Not sure what you mean - all urologists are supposed to collect this data from their patients and publish it. The problem is that many ignore the requirement and the Trusts don't enforce it. For uros that do it properly though, it is not just a form filling exercise - John and I are asked all the questions at the annual review with the consultant and we discuss the scores we are giving. The consultant tells us that many men lie or gloss over the problems which is why he asks partners to contribute.

It is the NHS and NICE that defines erectile function (for PCa outcomes) as 'natural or with chemical / mechanical assistance', just as they consider continence to be using one pad or less each day. If they defined these things the way we would wish, they would have to face the resourcing implications :-(

Edited by member 15 May 2017 at 22:48 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 15 May 2017 at 23:28

Interesting... Not sure why having clear facts would change resourcing though?

I agree it's likely men will lie.. Not many things they are more sensitive about . However whether questions are written or verbal the question stems can be expressed against baseline on both continence and ED . Our 'surgeon consultant' did collect baseline so as to identify his 'index' group and then publishes it. So yes I think PCa protocols need a major challenge including the available data for the newly diagnosed.

Transparency of outcomes has to be primary IMO.

User

Posted 16 May 2017 at 17:49

pn?? inherent researcher - was this a typo or does pn have an internet slang meaning I don't know.

I noted the BUPA comment in your early posts and found that incredible and totally unacceptable. You can accept that they would decline cover for this non-approved procedure, but on what basis did they think they needed to add superfluous, insensitive comment like that - talking about decisions relating to PCa as a lifestyle choice!! - they should have sacked whoever said it.

You may not believe this, but I was so incensed by what I read that when my wife was offered new health care cover on renewal, after being covered by them for 4 years I couldn't drop BUPA fast enough.

Interesting to read that you went to Florida, following your case I guessed you had gone to Houston.

User

Posted 22 May 2017 at 19:31

Hi Merrellj,

Yes a typo... Should be 'an' ... I have to wear my glasses when using my phone but am in denial!

Thank you for being incensed re BUPA ..it was a strange thing to include in the letter wasn't it. However they are paying for all monitoring so we will be with them for life now!

It did seem strange to be in a holiday resort for the procedure- but it was a very swish dedicate prostate facility!

I will follow up on A's company HR person who was complaining to BUPA on his behalf!...I had quite forgotten with everything going on... Our GP sent a letter to a different patient of the same name telling them they had prostate cancer (we have a mutual friend who told us), panicked the guy a fair bit until he realised he had never been tested for prostate cancer.

Nothing yet beats the letter we had from the first urologist informing A he was expected to live for the next 10 days!! We did laugh (and assumed he meant years!),

So letters and us have been a source of 'amused mild confusion'...

User

Posted 04 Jul 2017 at 16:47

So it has been 3 months since our trip to the USA for A's Focal Laser Ablation and yesterday was the 3 month consultation in London.

A's 3 month PSA is in at 1.85 ( 3.56 at diagnosis). The consultant said anything under 2 was good news given he still has his prostate.

So very happy with that.

With regard to erectile function this continues to improve and the consultant said this improvement should continue. Currently the erection strength for sex compared to pre FLA is variable (between 70% -100% naturally and 80% to 100%+ tablet assisted).

His day to day erectile functionality is still pretty low compared to pre FLA in terms of little in the way of 'semi' type incidences.

He had a big bi-lateral ablation however so we are not complaining (just reporting!)

No problems with continence since the evening 3 retention issue.

He is continuing with his dairy free, no alcohol, very low red meat and 12 tablets a day regime...

User

Posted 04 Jul 2017 at 20:07

Great news Claret :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 09 Oct 2017 at 20:19

6 month MpMRI and PSA today.

No results yet - tomorrow for PSA
I am back to being a bag of nerves - Is this how everybody gets? .., does it get better!

User

Posted 09 Oct 2017 at 20:48

Don't panic. My OH will be going through the same routine next month. Everything is going to be OK with both .
What was his PSA level after laser?

I'm afraid we'll have to stand up with this fear for a while.... Let's take it easy.

Best wishes,

Lola

User

Posted 09 Oct 2017 at 21:03

Hi Lola,

How are you guys getting on? I hope you had a great summer.

His 3 month PSA was 1.85 so all consultants happy at that point.

I have been v chilled until tonight when I am not!

Fear is a good description!

Best wishes to you

Clare

User

Posted 09 Oct 2017 at 21:05

So, trust the consultants! 👍

Don't be afraid.

User

Posted 16 Oct 2017 at 16:54

On train back from London (where the sky has changed to a strange 'grey but bright' twilight .. no rain yet but the storm seems to be getting close.

The consultation went very well with nothing suspicious showing - she described it as a clean scan.

She said there was clear evidence that he was still healing which was not a surprise to her given the size of the ablated area.

So big sigh of relief.. next PSA at 9 month point and MRI at 12 month point.

So no plan to return to the USA but have uploaded scan for second opinion from the US consultant who performed the FLA.

No incontinence
ED -mild with no tablets ( varies from 80%- 100% of pre procedure erection strength, but not as stable as prior to procedure) . Consultant said with size of ablation he is doing well in this respect and it will continue to improve.she prescribed levitra 10mg which sorts it completely!. Cialis gave him a rash and viagra ( amusingly and counter productively) gives him a headache!

So hoping that's it for next 3 months and US consultant agrees!

User

Posted 16 Oct 2017 at 17:01

Glad to read, Claret.
Now, relax. Everything is alright. Xx

OH will be having his checking in November. Crossed fingers.

Best wishes
Lola

User

Posted 16 Oct 2017 at 17:15

Great news Clare. Hoping things continue on the right track for you

User

Posted 16 Oct 2017 at 22:09

Thank you Lola and Chris, appreciate that.,
Let us know about Nov Lola and keep enjoying life.

Chris I continue to follow your story- you are an inspirational man in a very challenging circumstance.and your honesty with your experiences is really appreciated.

User

Posted 28 Jan 2018 at 17:51

Well Last Thursday A had his 9 month PSA test. He is 100% recovered from the procedure I've had in Florida March 2017 with regard to erection strength and stability so I have fingers crossed for a good number at our consult tomorrow morning.

We could have rung for the 'number' on Friday ( my preference) but he wanted it from the consultant directly. so won't know till tomorrow.

Feel the pain for all who have this regular monitoring situation .. it's not fun is it!

Best wishes to all

User

Posted 28 Jan 2018 at 20:42

Well I’ve got my fingers crossed x

User

Posted 28 Jan 2018 at 21:24

Good luck for tomorrow, I prefer to know my PSA before a meeting, it gives me time too clear my mind if it is bad news and focus on a plan.

Thanks Chris

User

Posted 28 Jan 2018 at 23:45

Thank you Chris and Chris,

I too would have preferred to know the number before the meeting tomorrow but I understand he feels the risk of getting bad news and having to wait over the weekend to discuss options is too much mentally.

I don't know if you guys get used to it...I just want to hold him tight and make it better.

User

Posted 29 Jan 2018 at 08:35

I also usually get my PSA result before appointments. I have a test about a week or so before appointments.

Like others I prefer to go in at least with that knowledge even if it isn’t a good result.

I don’t know about others but I still get stressed building up to each test and waiting for the result. I don’t think for me that is likely to change.

Hope all goes well today.

Ian

Ido4

User

Posted 29 Jan 2018 at 10:06

The score is in:

PSA 1.77

Phew.. I was starting to build a 'mental monster'

Trending down

Pre FLA 3.56
Post FLA 1.85
9 month post 1.77

So life back for a period ... next stop 12 month MpMRI and PSA

Thanks to the forum for being a safe place to 'worry' and for the kind wishes received.

Clare

User

Posted 29 Jan 2018 at 17:40

Clare, now relax, look after each other and push this PCa stuff into the background. Go and celebrate!

User

Posted 29 Jan 2018 at 18:05

Good news Clare.

Ido4

User

Posted 29 Jan 2018 at 18:11

Originally Posted by: Online Community Member

Clare, now relax, look after each other and push this PCa stuff into the background. Go and celebrate!

AC I think that is great advice , with my father in laws 6 years with advanced PCa, his death and then A's diagnosis a couple of months later, into the research and decision making, the treatment olanvand recovery from the treatment it has been omnipresent for too long.

Very happy today and feel a weight lifted. So pushing the PCa into a 'small box ' is a great plan. A goes on his dad's and sons ski trip on Wednesday so the timing is perfect.

I slept really badly last night and tonight I think will be much more peaceful.

The docs have been amazing and we are v grateful to all

Thanks AC

Clare

User

Posted 29 Jan 2018 at 18:15

Originally Posted by: Online Community Member

Good news Clare.

Yes indeed Ian, thank you . Next time I am insisting we get PSA test and consult on same day.. hopefully that will suit our different view on 'knowing the numbers!'

User

Posted 29 Jan 2018 at 18:19

Ooooo , all very different from what we are used to on here. I guess 1.77 isn’t low but it wasn’t high pre procedure. But at least it has dipped down and you have survived the dreaded ED and incontinence which is trademark of other procedures. Great news and keep us informed and best wishes. Oh , and open a bottle x

User

Posted 29 Jan 2018 at 18:34

Thanks so much Chris,

We are celebrating indeed . the consultant says as he still has his prostate anything under 2 is very good news and supports the 6 month MPMRI which showed nothing suspicious and as he is probably still healing the downward trend is fab. She has been super supportive of our non standard journey.

Thanks to you too as your positive words throughout have been much appreciated Chris.

Clare

User

Posted 31 Jan 2018 at 00:02

Hi Clare

Thanks for your note - your email blocked me as spam and your pm box on here is full.

Ian

User

Posted 31 Jan 2018 at 18:31

Hi Ian,

Ah I didn't realise my inbox was full - I have cleared down now. Checked my e mail 'spam' folder and some interesting finds..but nothing from you...

Regards

Clare

User

Posted 31 Jan 2018 at 19:41

Hi Clare hope all goes well, I am in exactly the same situation with Gleason 6 on both sides and currently on AS, nearly 2 years now. Very interested in how things turnout.

Keithyboy.

User

Posted 01 Feb 2018 at 00:04

Hi Keithyboy,

Thank you so much for your kind words.

I had a quick read of your posts and yes you and my husband have got a lot in common both age wise and being diagnosed via a company medical. Main difference is he didn't have symptoms but it sounds like yours may be something different.. fingers crossed you get that sorted.

We would have opted for the AS as per yourself ( it was offered but all consultants said due to its size this left side tumour would need treatment within 5 years so before he was 60).

So the 15mm core was the biggest but the agreement was all the 15 positive cores on the left were from one tumour.. like you his dad had PCa and that's what brought us to the FLA path.

The radical options offered just seemed like an overtreatment for a low risk diagnosis and the side effects .., well we couldn't quite get our heads around the quality of life impact.

Anyway all going well at the 9 month post stage...

Good luck with your AS ... long may it continue and you know we have taken a very positive spin on it all in realising life is fragile and so 'the small stuff' has never been so unimportant as in this last year and never has it been so clear that you need to get on with living life to the full,.. it has been strangely life enhancing!

Clare

User

Posted 06 Feb 2018 at 21:04

Hi Clare , thanks for the reply. Glad things are going not too bad for your husband 9 months on ,all things considered. It's very reassuring speaking to people on the site that are going through the same sort of dilemma and havIng to make possible life changing decisions and you don't feel you are on your own. I agree that your outlook on life changes somewhat when this sort of thing hits you in your mid fifties! I read a quote from someone on the site many months ago who said,..... "Don't dwell on the past as it has gone , don't worry about the future as it hasn't happened yet , but live in the present and make it beautiful " How I would love to put this into practice all the time, and as time passes it's becoming more and more relevant! Latest blood results this Friday for me , so we'll see what happens after that.

Hope all continues to improve with your husband.

Thanks again for your words.

Keithyboy

User

Posted 23 Apr 2018 at 15:16

Well one year MpMRI scan, PSA test and consultation today.

All good news pre FLA A was PIRADS 4 and diagnosed with a low risk high volume Gleason 3+3 tumour.

Today there is no sign of cancer and he is rated at PIRADS 2.

Today’s PSA was 1.87.

She considers he is now fully healed from the FLA and is moving him to 4 monthly PSA monitoring with an annual MpMRI

Gosh anxiety kicks inthe few days before the testing!

User

Posted 23 Apr 2018 at 15:59

That's great news for you both.☺ I know exactly what you mean about the anxiety around testing time. I suffer badly from that.Let's hope it improves as time goes by.

Best Wishes.

User

Posted 23 Apr 2018 at 17:23

Great result for you both. All the best

User

Posted 23 Apr 2018 at 17:31

Thank you Anne and Chris

User

Posted 23 Apr 2018 at 18:10

Fantastic result for you both.

Best wishes, Ian.

Ido4

User

Posted 23 Apr 2018 at 18:27

Thank you Ian.

User

Posted 24 Apr 2018 at 09:31

Claret - hard to believe a year has passed already - glad to read of these encouraging results.

Ulsterman

User

Posted 24 Apr 2018 at 09:37

I know Ulsterman the year has gone quickly.

Still got my fingers crossed for the discovery of a nice vaccine solution for the next generation .

With all best wishes

Clare

User

Posted 02 Aug 2018 at 16:45

Gosh these PSA tests come round quickly and I think each one is harder To go through than the last.

4 month testing is where we are at and 16 months post FLA treatment A’s PSA is 1.44

Phew.. it is easy to create all scenarios in the few days before the test but clearly we are thrilled.

Claret

User

Posted 02 Aug 2018 at 16:57

Just looking in.

Long may it continue

really chuffed for you both

Barry

User

Posted 02 Aug 2018 at 17:10

Thank you Barry.. I beat myself up in the days running up with ‘what ifs’ ..

still got my hopes on the vaccine for the next generation!

1.44 is lowest yet so couldn’t be more relieved!

User

Posted 02 Aug 2018 at 17:15

Really pleased for you both.

User

Posted 02 Aug 2018 at 18:09

Good news.

Ido4

User

Posted 02 Aug 2018 at 23:08

As I believe A's FLA was the only way his PCa was radically treated and he still has a Prostate ,1.44 after successive falls seems very good. This is much better than my latest PSA of 1.35 following successive rises following HIFU as salvage treatment for failed radiotherapy, my Prostate having been more severely damaged by the two forms of treatment. I doubt FLA would be appropriate for me now so maybe more HIFU or Cryotherapy. Let's hope Andy does not need any further treatment.

Barry

User

Posted 02 Aug 2018 at 23:13

Thank you Chris and Ian .. appreciate that

Clare

User

Posted 03 Aug 2018 at 12:06

Very interesting story.

Had never heard of FLA before, which is a bit annoying as I would maybe have been a good candidate. But too late now having gone the radical route. Don't suppose it would have been financially practical either as suspect AXA PPP would have considered it a "lifestyle choice" too.

Anyway, very happy to hear it's worked for you.

Nick

User

Posted 03 Aug 2018 at 23:16

Originally Posted by: Online Community Member

rhank you Barry, your posts and pioneering spirit continue to inspire and i appreciate your support.,

Clare

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