Focal Laser Ablation

User

Posted 27 Apr 2017 at 13:35

Hello,

I see you have been taken to ask about how the site operates, and whilst appreciating the need not to advertise/promote proprietary information on a community support group like this, it is nevertheless surprising that an organisation and site of this stature does not provide a better resource base or some type of registry of specialist providers - Urology consultant practices, relevant clinical trials database, clinical papers, specialist intervention clinicians for FLA, PAE, Holep, Itind, Green Light etc etc, directory of mp3T MRI centres, etc.

Like the initial groundwork as detailed in your postings, it is somewhat frustrating for each of us to have to repeat all this independently as opposed to being able to access an updated, ready collated resource at a time when focus and effort needs to be targeted on supporting the patient, not trawling the internet for piecemeal information.

Your posts have been an interesting insight, not only into your own journey, but into the extensive ground that can be covered in the search for personal answers, where to go for the best professional diagnosis, treatment and support in the absence of any coordinated knowledge base.

Thank you for that and I hope your husband's recovery is progressing well

User

Posted 27 Apr 2017 at 23:04

Hi there,

Thank you for the post. I agree the task of finding out exactly who is doing what where is mammoth and despite all my efforts to get fully informed about the world of PCa ( focusing on the G6 and G7 (3+4) diagnosis) things are rapidly changing and the urology profession area working in silos from what I see. On return from the USA I became aware of the KCH trial using nano knife as a primary treatment.. despite following clinical trial database I failed to find that Intel .. so yes I would support full transparency of a database of who does what and where. Prostate cancer uk have done a freedom of information search on the location of MPMri machines and their use ( not Magnet strength though) it would all need maintaining however I think in this era of big data it would be a worthwhile project.

My husband is recovering still. Peeing blood but continent and working full time! It will be some time of course before the follow up. If we follow up in the USA in September and anything appears to be suspicious the consultant does a 'there and then' re ablation.

He is religiously taking his supplements ( including the low dose aspirin and vitamin D3) plus has gone zero tolerance on diary. Generally he is super healthy diet and exercise wise anyway.

Regards

Clare

User

Posted 28 Apr 2017 at 20:53

Hello,

Thanx for your extensive reply and the usual high standard of forensic content!

I saw reference to the FOI request (and the comments about your retrospective non mpMRI access) in your earlier postings, do you know if this information has actually been provided and yet made publicly available.

Thought you rather than your husband was the diary keeper and he'd always been zero tolerance on this!! That's why we had you to thank for the extent and depth of the analytical coverage.

If he's gone dairy free too, what's the theory behind this, I haven't come across this anywhere to date.

Thanx for your help.

User

Posted 29 Apr 2017 at 19:38

Hi there,

Yes the prostate cancer UK freedom of information intelligence on the location and usage of the MpMRI is available on the main site.

My husband added dairy free to his lifestyle based on research summarised here:

http://www.pcrm.org/health/health-topics/milk-and-prostate-cancer-the-evidence-mounts

I contine to take milk in my tea!

Clearly it's all a bit of a punt re the diet with only the aspirin and vitamin D being currently studied in a full clinical trial ( as far as I am aware)

Glad to help. I'm a pn inherent researcher!

Good luck

Clare

User

Posted 04 May 2017 at 20:09

5 weeks post FLA update

All is well ATM, peeing back to notmal with no evidence of blood in the urine.

Erection strength is about 70% and orgasm is blood so I guess that means he is not healed! No drugs due to cialis reaction but confident we will get our sex life back. ( probably minus semen).

He is reporting more fatigue than normal and missing the gym so we think an unusually ( for him) low amount of exercise will be contributing to the fatigue.

Do his prostate has definitely had a bashing ... here hoping it has done the job

Clare

User

Posted 04 May 2017 at 20:40

Keeping positive for you both and all sounding very hopeful so far. Loving your positive nuts-and-bolts posts with all the detail. Good for you x

If life gives you lemons , then make lemonade

User

Posted 05 May 2017 at 20:06

Thank you Chris,

Given a 30,000 usd investment and a 9 hr flight to get to Florida I feel I must give full disclosure in case anyone is considering it!

BUPA described it as a lifestyle choice and wewere told no ED side effects...,

But definitely improving... obviously as we get nearer to 3 month monitoring appointment the cancer will get centre stage but like for you our sex life is not something unimportant either!

Interestingly a colleague of A's has a dad who died of PCa and his brother is a GP with symptoms who is refusing to consider a PSA test as he would rather not know.

We are all individuals with our own minds but also the ability to bounce ideas, communicate and make it a shared experience here on this community is simply fab x

User

Posted 05 May 2017 at 20:49

My brother, though retired from the NHS , is a fully qualified Dr and made it to consultant Radiologist. He refuses to have a test even though I was G9 T4 N1 at 48 yrs old. We are all different as you say. I'm not sure I blame him tbh given all I've been through for no substantial gain.
Wishing the luck to continue x

If life gives you lemons , then make lemonade

User

Posted 15 May 2017 at 08:06

Latest update at the 7 week post FLA date.

Meds:
Tamsulosin only

Incontinence - none but a dribble still at the end of each pee apparently ( needs to take time to finish)
ED - Back to being able to have full sex with erection strength variable between 80%-99% of pre FLA procedure

When we first consulted on surgery the ED outcomes we were given (published real time data)

95 men 12 months post surgery

-Age of men 50-59
-index group (no pre surgery ED)

Dark Green: Sufficient for full sexual intercourse 57 men

Light Green: Sufficient for masturbation /foreplay but not full sexual intercourse 28 men

Yellow: Some enlargement but not sufficient for sexual activity 7

Red: No enlargement 3

The data is presented in real time as a pie chart and the data can be searched by ages/ group/ surgery type etc.

These colours have passed into our vocabulary when discussing the risk of ED. Now we are in the dark green group (though post FLA not surgery) I realise we probably should have asked what 'Sufficient for full sexual intercourse' is actually defined as and it would be great to know in addition how many get back to 'pre procedure' erection strength and to have this real time data as the norm for all men opting for any type of procedure to treat PCa.

I don't know if PCUK are doing any work on this area.

Anyway..just to update re the FLA experience

Next update should be focusing the actual cancer outcomes!

Regards

Clare

User

Posted 15 May 2017 at 08:28

Also worth noting that the published outcomes (if you are quoting the IIEF or NHS stats) do not differentiate between natural erections and those with help so there is no way of knowing what proportion of the 57 / 28 / 7 / 3 are using a vacuum / tablets / injections.

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

User

Posted 15 May 2017 at 09:01

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 21:08

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 21:43

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 21:48 | Reason: Not specified

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

User

Posted 15 May 2017 at 22:28

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 16:49

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 18:31

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 15:47

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 19:07

Great news Claret :-)

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

User

Posted 09 Oct 2017 at 19:19

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 19:48

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

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