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Focal Laser Ablation

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User
Posted 01 Mar 2017 at 23:10

Hi all,

After a few PM conversations I am starting a thread for info on A's journey with his G6( 3+3) PCa.

Following three consultations including three separate reports on the MpMRI scan the decision is made to proceed privately with a self funded FLA at one of the USA centres that offers this treatment.

This decision has been taken following much research, many conversations with both professionals and other UK guys who have followed this path plus detailed risk analysis re the possibility of an over treatment or an under treatment decision. Input from the pioneers on this site via PM has also really helped. Thank you.

So my plan is to keep this factual and record the treatment journey in case it is of interest to anyone else. 

The treatment part of A's journey begins at the end of March following his return from a long planned ski trip. 

Kind Regards

C

 

User
Posted 01 Apr 2017 at 15:04
Just an update.

FLA done on Monday to ablate large left hand side Gleason 6 tumour plus 2 small Gleason 6 tumours on the right hand side.

Catheter in for Monday, Tuesday and Wednesday night. Recovering near to centre in a hotel ( the clinic has a pop in open door policy but we have only needed to go when due.

Catheter out on Thurday, water drunk, urine passed, examined and taught to self Catherise and given bag of self Cath equipment plus jug for the 48 hour urine monitor.

A woke up Thursday night needing to pee and just couldn't so had to face up to putting in a temporary catheter.. Wasn't that bad( came pre lubed in its own bag which then became the 'catch bag' as the catheter went in... He filled it and was much relieved in both senses!

Friday morning he peed normally and the pressure of flow improved all day. No problems last night ( Friday evening) slept through and peed this morning..he is feeling slightly bloated so possibly mild retention?? Uncertain so will discuss at check up later.

Still on medication so no real idea what impact that is having

Antibiotic

Prednisolone

Cialis

Tamousilin

There is definitely 'life' in the form of semi erections but given the nerve bundles were not touched that is expected.

Back to drinking his green tea.. Thinking he should cut it out ( caffeine) whilst he is healing.

No blood in urine but warned in around 3 weeks time the prostate will start showing... signs if healing via the urine in the form of blood and scabs etc... Hmmm..

User
Posted 01 Mar 2017 at 23:10

Hi all,

After a few PM conversations I am starting a thread for info on A's journey with his G6( 3+3) PCa.

Following three consultations including three separate reports on the MpMRI scan the decision is made to proceed privately with a self funded FLA at one of the USA centres that offers this treatment.

This decision has been taken following much research, many conversations with both professionals and other UK guys who have followed this path plus detailed risk analysis re the possibility of an over treatment or an under treatment decision. Input from the pioneers on this site via PM has also really helped. Thank you.

So my plan is to keep this factual and record the treatment journey in case it is of interest to anyone else. 

The treatment part of A's journey begins at the end of March following his return from a long planned ski trip. 

Kind Regards

C

 

User
Posted 02 Mar 2017 at 07:02

That's brilliant news and it will be great to have a new thread detailing a new journey which is of a rarer nature. Hopefully people can refer to it whenever when making treatment choices. I'll be following you
Best wishes
Chris

User
Posted 02 Mar 2017 at 10:25

Look forward to hearing how it goes.

User
Posted 02 Mar 2017 at 14:10

I hope the snow is good and the treatment goes well

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

User
Posted 03 Mar 2017 at 23:14

Clare,

It may well be that others in due course consider a similar treatment even if unlike Andy they are not covered by insurance and would have to self fund. If it is possible to ascertain what the treatment currently costs, what is involved in follow up visits and what if any further treatments in need FLA would preclude, this would add to the treatment experience and progress and consideration of it as a treatment possibility

Hope it goes well.

Barry
User
Posted 16 Mar 2017 at 18:32

Both Viagra and Cialis are PDE5 drugs to help with ED although they do work slightly differently. But I'm guessing so soon after the treatment they are aiming to help with swelling and blocking of the urethra. People are normally given Tamulosin for this in thevUK. Best check again Clare. All I do know is lots of areas won't prescribe Cialis as it is expensive. I'm not sure if Viagra can be taken daily nor at what dose.

User
Posted 16 Mar 2017 at 21:49

Tamsulosin hydrochloride has been around for many years. It must be the best part of 20 years since I was prescribed it and early on it was known as 'Flowmax'. As I have taken it over the years the name on the packet has changed several times. My guess is that the cheapest brand that can be obtained is supplied-at least for NHS patients. But the important thing is to be sure that tamsulosin hydrochloride is on the packaging. Mine is a 400 microgram capsule taken once a day but others may be prescribed a different dose.

Hope it goes well Clare and interested to follow progress.

Barry
User
Posted 16 Mar 2017 at 22:42

Good luck Clare - hope it's a successful trip and looking forward to hearing about it on your return.

Chris

User
Posted 27 Mar 2017 at 16:09

Wow what a huge step for you both but sounds like good treatment so far. I really really hope it works out. Forget the money and " no regrets " remember. Best wishes

User
Posted 27 Mar 2017 at 18:11

Hi, Claret, when you say 3T you mean 3 Tesla?

All the best to you in the US. I hope you get the best possible treatment.
Lola

User
Posted 27 Mar 2017 at 18:58

Paco had also had done a T3 MP MRI test before biopsy. This is a pretty accurate machine, I think.


Let us know how you are doing later.

Enjoy the trip, by the way😉

Lola

User
Posted 27 Mar 2017 at 20:05
Hi Clare

All the best.

Regards

Gordon

User
Posted 28 Mar 2017 at 14:30

Hi, Clare.

Glad to know you've finished at least for today and can have a rest.

I'm somehow confused, maybe because of the language or because of medical words. I'm not sure about what your hub has had done. A MP MRI previous to biopsy or a biopsy targeted by multiparametral MRI by 3 TESLAS..

On the other hand you mention "laser". I can't find the connection as , as far as I know laser {we call it"green laser") is used for other prostate issues.

My husband's tumor was shown in MP MRI and then confirmed by biopsy, Gleason 4+3=7

This is not the right moment to ask questions to you. All you have to do now is resting and relaxing.

I'm also on my trip to Madrid for Paco's results from bone scan and CAT. The urologist will tell us and confirm or not on the robotic surgery he offered after biopsy and MP MRI.

Take it easy, relax and rest.

Best wishes,

Lola

User
Posted 28 Mar 2017 at 14:50

Good news Clare. Best wishes on great results

User
Posted 28 Mar 2017 at 15:23
C

Sounds like all is going to plan, the mention of treatment of the bladder neck stricture caught my attention. Is your consultant treating the stricture with the FLA or a more conventional treatment i.e. dilatation or incision into the tissue ?

Thanks Chris

User
Posted 28 Mar 2017 at 15:43

Really interesting to read your story and glad to see it is going well. I'm sure this will all help others in the future.

User
Posted 28 Mar 2017 at 16:32

Hi Chris,

With regard to the stricture it was diagnosed and treated yesterday! Yes the consultant used the laser to sort it out and says the urine flow should be noticeably improved.

A had never said he had noticed any change in his urine flow but when it came up yesterday said that since around 2013 he had I fact not been able to urinate as quickly as he used to, he commented that it took some time for the last bits to 'dribble out' and could even say when he did the Leeds half marathon in 2014 it was strange he had to stop to pee and that it took 32 seconds off his time cos that's how long he took!!

So news to me but seems he did have symptoms in this respect and the consultant saw and pointed out the problem straight away on the 3T scan yesterday.. He said he could sort it if A wanted him to though it wasn't cancer ...

A said yes please and Consultant pointed out it was gone in the after event slide show ... However could be a map of the moon for all my knowledge! ( I can recognised the hip bones now thought!)

Weather is perfect here so a good place to recover and he's on the balcony in a chair with a big cushion being nagged to do reverse kegals.

So yes a stricture was a new diagnosis!

Hope that answers the question

Regards

Clare

User
Posted 28 Mar 2017 at 16:50

Hi, Clare.

Now it is quite clear to me. Despite reading almost every post here I wasn't aware of this subject.

That's great, not only because of the fact that the procedure has gone ok but also because in case (crossing fingers) it didn't work good enough you can come back to conventional treatment.

Really glad for you both. Thanks for sharing, as anyone can take benefit of the knowledge you provide.

The best to you.

Just arriving in Madrid.
Love

Lola

User
Posted 28 Mar 2017 at 16:50

On the balcony in nice weather with a cushion ???
As much as I love the NHS , this is sounding great Clare. I'd be nagging you for a glass of wine whatever they said !!

User
Posted 28 Mar 2017 at 17:37

Ah Chris-,alchohol is number 1 enemy to the bladder for anyone wearing a catheter according to Susie the lovely American physical therapist! Not even green tea is getting passed me ( caffeine is number 2 enemy) . He did have steak and ice cream the night before as the prostate was getting a good ablation it didn't seem an unreasonable decision, he needs to be grateful lol!

Now if we could get sunshine on the NHS that would be a vote earning policy!

User
Posted 02 Apr 2017 at 02:09

Hi Clare,

Your reports make interesting reading. Seems that blood and dead cells can be expelled in the urine in a similar way to HIFU. Some men also get retention in this procedure although I was lucky in this respect.

Barry
User
Posted 02 Apr 2017 at 08:28
Hi Clare

Thanks for sharing the journey to date. It sounds like everything is going to plan, which must be so re-assuring after such a big decision.

Best regards

Chris

User
Posted 02 Apr 2017 at 08:36

Clare, great news!

Thanks for sharing the outdate. Wish everything continues to go like this.

On my part, awaiting the 25th for Paco's operation.

Best wishes,

Lola.

User
Posted 03 Apr 2017 at 20:02


Nothing much to report except pee flow getting stronger - now doing 400 ml which we understand is as good as it gets ... Pressure still lowest in morning but improving as day goes on. Slight internal pain still from time to time and ED no changes from the semi status! ( committed to 100% disclosure so sorry if it's tmi!)

Barry - that's interesting sounds very similar post procedure to the HIFU....

Chris - hope your recovery is going well

Lola - keep enjoying the Spring and the family time

Big shop at the chemist yesterday - v much cheaper than in the UK so took opportunity to stock up on low dose aspirin, vitamin D3, turmeric and milk thistle. Ben and Jerrys next door to hotel do a almond milk diary free ice cream - I think their profits are up this week! Shame we can't take this home ...
Regards

Clare


User
Posted 18 Apr 2017 at 20:28

update at 3 weeks post FLA

3.5 hour FLA done in the USA on 27th March
5th April flew home
10th April A was back at work
18th April erection strength best since 26th March (about 80%)

Current meds:

Tamousilin 1 tab at night

All other meds stopped (cialis stopped early due to side effects)

-no incontinence
-no getting up in night to pee
-flow still not back to full strength and still doing reverse kegels whilst peeing but improvement seen
-uncertain whether he is one of 30% to lose ejaculate completely as its just like post template biopsy re orgasming blood ( only tried the once post FLA)
-pre ejaculate now back after 2 week absence
-erection strength improving (took two months after template biopsy to recover)
-too early to judge if it was succesful re his PCa of course

For info

User
Posted 27 Apr 2017 at 14:35

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 28 Apr 2017 at 00:04

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 15 May 2017 at 09:06

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 09:28

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 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 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 20:48

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 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 20:42

Well I’ve got my fingers crossed x

User
Posted 28 Jan 2018 at 21:24
C

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 17:40

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

AC

User
Posted 29 Jan 2018 at 18:05
Good news Clare.

Ido4

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 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 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 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 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 17:15
Really pleased for you both.
User
Posted 02 Aug 2018 at 18:09

Good news. 

 

Ido4

User
Posted 08 Aug 2018 at 01:53
Brilliant news
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2019 at 18:25

Thank you Ian

and to you as well

Clare

User
Posted 04 Apr 2019 at 01:23
Great news - now the challenge will be to move towards 6 monthly checks as time goes by ... easy for me to say since John has never progressed beyond 3 monthly :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Apr 2019 at 06:02
Great news Clare. Proved a superb decision all round I reckon x
User
Posted 08 Apr 2019 at 21:27
Thanks both

Continue to be happy with our decision to get on that plane two years ago. I am really pleased to read the Prostate cancer UK are funding research into focal therapy.

For me I am struggling to agree to the 6 monthly PSA test. A would do what the consultant advises so it’s definitely me struggling to let go of 4 monthly checks!

For those with a low risk diagnosis a focal treatment is worth considering in my view. We have avoided an overtreatment which we were concerned we were being pushed into. We may have avoided an undertrreatment too as AS was on offer too.

I do think the UK needs a middle ground option for those in the same situation as A.

User
Posted 20 Nov 2019 at 02:53
So sorry the FLA has not done the job for A and I think it makes sense to obtain other expert opinions on what might be the best way forward now. We are interested in what is decided and hope that it will give a better long term result.
Barry
User
Posted 20 Nov 2019 at 05:56
So sorry to hear this Clare. It seems you never can get rid of this disease totally. Good luck moving forward.
User
Posted 03 Dec 2019 at 02:22

Clare,

I know you and A are looking for best treatment with minimal side effects, Before making the treatment decision you might want to look at two advances on the probe system used on me and I expect would be used on A, namely the Sonablate. I suggest you look at the comparison made between TULSA PRO v HIFU made by my Heidelberg Hospital and DKFZ which I previously posted as the second link in the following link in July https://community.prostatecanceruk.org/posts/t21556-TULSA-PRO-V-HIFU

There is also said to be another advance on the HIFU machine called the Exablate so might be worth looking into this too.

Very interested to learn how you see it and what A opts for.

Edited by member 03 Dec 2019 at 02:44  | Reason: Not specified

Barry
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User
Posted 02 Mar 2017 at 07:02

That's brilliant news and it will be great to have a new thread detailing a new journey which is of a rarer nature. Hopefully people can refer to it whenever when making treatment choices. I'll be following you
Best wishes
Chris

User
Posted 02 Mar 2017 at 10:25

Look forward to hearing how it goes.

User
Posted 02 Mar 2017 at 14:10

I hope the snow is good and the treatment goes well

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

User
Posted 03 Mar 2017 at 23:14

Clare,

It may well be that others in due course consider a similar treatment even if unlike Andy they are not covered by insurance and would have to self fund. If it is possible to ascertain what the treatment currently costs, what is involved in follow up visits and what if any further treatments in need FLA would preclude, this would add to the treatment experience and progress and consideration of it as a treatment possibility

Hope it goes well.

Barry
User
Posted 04 Mar 2017 at 13:57

Thank you Barry,

Just to clarify the BUPA position is they will not fund the FLA - the words they used were ' this is a lifestyle choice treatment' .

Not a surprise tbh - we did expect to self fund this treatment.

An expensive lifestyle choice it is!

Regards
C

User
Posted 05 Mar 2017 at 07:26
Hi Clare

This will be really useful information for people, and as Barry mentioned, really helpful if there can be an indication of all associated costs.

Wishing the best for you both - enjoy the skiing. I've just returned from 2 weeks in India ahead of my op in 2 weeks, and the break certainly helped me.

Chris

User
Posted 05 Mar 2017 at 12:23

thanks Chris,

There are a number of different options with prices varying. We have based the decision on experience rather than cost as the decision about how much margin to take seems crucial.

The FLA we have booked will cost us USD 30.000. So roughly £24,000 depending on forex rate. Clearly flights and hotels are on top of that. We have also got an 'in case we need a second' contract in place. Clearly we are hoping not to need to use it but I think it's an important ask when making a financial decision. Should we have to have a second FLA ( following the monitoring PSA testing and MpMRI scan ) the agreed cost is USD 2.500 which covers the techie bits with the FLA part being free for a second procedure.

I have no medical qualifications at all so hope everyone reading will get own advice but my understanding is unlike HIFU as an example a RP can still be performed after a FLA with no additional difficulty. I am aware some surgeons can now remove a Prostate after HIFU but my understanding is it is a difficult ask.

Hope that clarifies

Regards
C

User
Posted 16 Mar 2017 at 18:20

Hi all,

Just getting organised for the upcoming trip to get the FLA and wanted to ask re meds that are involved.

A saw a locum GP and came out with a prescription for all he needs except the Cialis 5mg which he needs to take for a week after the procedure - 1 a day in the am.

The Locum GP said he could only prescribe generic Viagra, so A left it to check in with the USA consultant.

The USA script says Cialis 5mg to help urine flow and the Locum GP was talking about ED. I thought Viagra and Cialis worked in completely different ways so don't think one can automatically substitute the other for this purpose. It's not major I was just curious and am aware there is lots of experience on this forum, so I am brain picking.

Everything else ticked off on list

Flights
Hotel
Loose trousers!
Other meds

No Cialis this side!

Regards

Clare

User
Posted 16 Mar 2017 at 18:32

Both Viagra and Cialis are PDE5 drugs to help with ED although they do work slightly differently. But I'm guessing so soon after the treatment they are aiming to help with swelling and blocking of the urethra. People are normally given Tamulosin for this in thevUK. Best check again Clare. All I do know is lots of areas won't prescribe Cialis as it is expensive. I'm not sure if Viagra can be taken daily nor at what dose.

User
Posted 16 Mar 2017 at 21:19

Thanks Chris,

I will indeed double check all when we get there ( except anti biotic that starts before we leave but I'm fine about what that is all about!)

Tamulosin is one of the other 'after procedure' meds - they are calling it flowmax but Google tells us that's what flonax is.

This plus cialis are described as 'to help with urine flow' so I think you are right as with a catheter in for 4 days we don't want to get this wrong!

Would have been nice to see our own GP although the locum was very nice. I think an email to check we can be prescribed cialis once there should reassure.
Thanks Chris

Clare

User
Posted 16 Mar 2017 at 21:49

Tamsulosin hydrochloride has been around for many years. It must be the best part of 20 years since I was prescribed it and early on it was known as 'Flowmax'. As I have taken it over the years the name on the packet has changed several times. My guess is that the cheapest brand that can be obtained is supplied-at least for NHS patients. But the important thing is to be sure that tamsulosin hydrochloride is on the packaging. Mine is a 400 microgram capsule taken once a day but others may be prescribed a different dose.

Hope it goes well Clare and interested to follow progress.

Barry
User
Posted 16 Mar 2017 at 22:42

Good luck Clare - hope it's a successful trip and looking forward to hearing about it on your return.

Chris

User
Posted 16 Mar 2017 at 22:51

Originally Posted by: Online Community Member

Hi all,

After a few PM conversations I am starting a thread for info on A's journey with his G6( 3+3) PCa.

Following three consultations including three separate reports on the MpMRI scan the decision is made to proceed privately with a self funded FLA at one of the USA centres that offers this treatment.

This all sounds very interesting but I have no idea of what you are talking about?  That's presumably down to my ignorance but  . . .  what is GR etc., and FLA?

 

User
Posted 16 Mar 2017 at 23:20
Barry, thank you for the Intel - very useful. The USA consultant script has described it as flomax so it must be a brand. It maybe easiest to just get the after meds in the USA.

Chris-,thank you. I can't say it's not scary to walk this path but none of us can wish away the diagnosis unfortunately. I appreciate your words.

Nomad, not sure where I aaid GR but an FLA is a focal laser alation. This treats the tumour rather than the whole gland. It is practiced in Holland and the USA privately. My husband has a Large amount of Gleason 6 and a family history. All consultants agree he will need treatment despite being offered AS for now.

So we are going to try this as a route to avoid the side effects of RP or RT,both of which were offered.

He was also offered HIFU but the side we've ta of a whole gland treatment for a low risk diagnosis-analysed a risk of over treatment. AS analysed as under treatment . So opting to self fund a middle route and have a trip to the USA planned at the end of the month.

Full blood tests run this week include first PSA since diagnosis in December when it was 3.56.. So an alternative treatment journey about to start.

Regards

Clare

User
Posted 27 Mar 2017 at 16:03

Arrived in the USA yesterday for the FLA procedure today.

1st hour was spent with a physical therapist who did a 'hands on' session to teach 'reverse kegals' which must be done daily whilst the catheter is in situ to prevent / cope with bladder cramps etc..

She also covered sleeping with a catheter and recommendations for living with it for four days including restricted food list and modified yoga positions for comfort etc.

It was very educational on the pelvic floor and I was impressed .. Feeling fully informed about the nasty possibilities of the next few days whilst the catheter is in.

A with the nurse now and we are headed in for pre consult with consultant before the main event.

Confidence levels are high... Bank account took major hit! ( think I'll have another cup of 'free' coffee! Lol)

User
Posted 27 Mar 2017 at 16:09

Wow what a huge step for you both but sounds like good treatment so far. I really really hope it works out. Forget the money and " no regrets " remember. Best wishes

User
Posted 27 Mar 2017 at 18:03

Thank you Chris. I am very lucky to be a naturally positive thinker and as an accountant by training it's now a 'sunk cost' never to be dwelled on!

Just had a full review of the UK scan projected to screen with the consultant so for first time know the machine used was a MpMRI but the magnet strength was 1.5T not 3T. Images are therefore good but not as sharp as ideal so he is in the 3T machine now ...

Useful to know re planning monitoring going forward. The playing field is not level when it comes to availability of scanning technology.

Not sure if the prostate cancer uk freedom of information request asked about the magnetic strength in each location.. I am going to have a look whilst I am waiting though.

User
Posted 27 Mar 2017 at 18:11

Hi, Claret, when you say 3T you mean 3 Tesla?

All the best to you in the US. I hope you get the best possible treatment.
Lola

User
Posted 27 Mar 2017 at 18:29

Hi Lola,

Thank you for your best wishes and I too hope you do also.

Yes I mean a 3 Tesla magnet - you are correct.

We were diagnosed via BUPA in the UK and the MpMRI machine used I now know was a 1.5 tesla. My understanding is this relates to the magnet strength and the image quality.

A is currently in having another MpMRI but using the 3 tesla machine.

Then we are getting a side by side talk through!

Only lunchtime here in the USA so it's going to be a long day for us.

Best wishes to you in Spain

Clare

User
Posted 27 Mar 2017 at 18:58

Paco had also had done a T3 MP MRI test before biopsy. This is a pretty accurate machine, I think.


Let us know how you are doing later.

Enjoy the trip, by the way😉

Lola

User
Posted 27 Mar 2017 at 20:05
Hi Clare

All the best.

Regards

Gordon

User
Posted 28 Mar 2017 at 14:00

Thank you Lola and Gordon,

Well all done. He was under the laser for 3.5 hours in the end. The consultant kept bringing him out of the MRI and he kept thinking it was over but no just another reposition of the laser and back in.

In addition to the cancer there was a node/stricture on the neck of the bladder which he offered to treat. We said yes to this as likely to cause urine flow difficulties at same time.

Following the procedure the images were run through but today we go back for a complete 'show and tell' plus we get the CD! The catheter is not providing to be as big a problem as A thought, it should be in for 3 days. The consultant said it was a hard treatment and considers from his experience there was likely to be Gleason 7 in some of the areas that he ablated based on the tissue density experienced.

Big rest day today. Started Cialis, prednisone and contining on antibiotics this morning. List of drink/ food no nos whilst having a catheter...he is following orders and sleeping.

Thanks for the support. Monitoring in place for back in UK and the UK consultant we are going with seems genuinely interested in having the case.

Clare

User
Posted 28 Mar 2017 at 14:30

Hi, Clare.

Glad to know you've finished at least for today and can have a rest.

I'm somehow confused, maybe because of the language or because of medical words. I'm not sure about what your hub has had done. A MP MRI previous to biopsy or a biopsy targeted by multiparametral MRI by 3 TESLAS..

On the other hand you mention "laser". I can't find the connection as , as far as I know laser {we call it"green laser") is used for other prostate issues.

My husband's tumor was shown in MP MRI and then confirmed by biopsy, Gleason 4+3=7

This is not the right moment to ask questions to you. All you have to do now is resting and relaxing.

I'm also on my trip to Madrid for Paco's results from bone scan and CAT. The urologist will tell us and confirm or not on the robotic surgery he offered after biopsy and MP MRI.

Take it easy, relax and rest.

Best wishes,

Lola

User
Posted 28 Mar 2017 at 14:50

Good news Clare. Best wishes on great results

User
Posted 28 Mar 2017 at 15:23
C

Sounds like all is going to plan, the mention of treatment of the bladder neck stricture caught my attention. Is your consultant treating the stricture with the FLA or a more conventional treatment i.e. dilatation or incision into the tissue ?

Thanks Chris

User
Posted 28 Mar 2017 at 15:43

Really interesting to read your story and glad to see it is going well. I'm sure this will all help others in the future.

User
Posted 28 Mar 2017 at 16:17

Hi Lola,

I don't think your confusion is a language issue but that we have opted for a treatment that is considered 'experimental' . It is a bluelight laser that is used for cancer rather than the greenlight treatment that I know little about but I believe can be used for BPH.

The treatment A had yesterday is not available in the UK and the only part of Europe using it is Holland as far as I am aware. Even though classed as experimental the first FLA was done in the USA in 2009 and the consultant we used yesterday has treated over 1.000 men to date.

So my husband was diagnosed in December 2016 via a 1.5 tesla MpMRI scan which could clearly see the abnormalities. This was followed up with a targeted biopsy of 46 cores taken under general anaesthetic. 17 cores had Gleason 6 (3+3 ) identified and 11 / 20 segments were impacted so large but diagnosed as low risk.

The treatment my husband opted for then used the MRI 3 tesla to give the visuals in order to treat the tumour directly. So the laser is inserted and then he was put into the MRI machine to check position in real time. Once laser is in correct place the MRI slides back and the ablation is done. The laser then gets repositioned, check with MRI etc etc so he had 3.5 hours of going in and out of the MRI machine getting the tumour zapped as it were.

We decided to opt for this rather than the offered surgery or radiotherapy due to the side effects of the radical treatments. We didn't't want to over treat especially as he was diagnosed Gleason 6

Active surveillance felt like an under treatment due to the family history and large size of tumour.

The radical approaches are still available should this focal laser ablation fail or we can return for a second go but the consultants was confident he had got it yesterday..he was certainly thorough... Fingers crossed .. Clearly he will need lifetime monitoring now ( he is 54) .

I hope Madrid trip is fruitful. Thank you for your kind words Lola. I am very grateful for all support received and let us know how you get on.

Regards

Clare

User
Posted 28 Mar 2017 at 16:32

Hi Chris,

With regard to the stricture it was diagnosed and treated yesterday! Yes the consultant used the laser to sort it out and says the urine flow should be noticeably improved.

A had never said he had noticed any change in his urine flow but when it came up yesterday said that since around 2013 he had I fact not been able to urinate as quickly as he used to, he commented that it took some time for the last bits to 'dribble out' and could even say when he did the Leeds half marathon in 2014 it was strange he had to stop to pee and that it took 32 seconds off his time cos that's how long he took!!

So news to me but seems he did have symptoms in this respect and the consultant saw and pointed out the problem straight away on the 3T scan yesterday.. He said he could sort it if A wanted him to though it wasn't cancer ...

A said yes please and Consultant pointed out it was gone in the after event slide show ... However could be a map of the moon for all my knowledge! ( I can recognised the hip bones now thought!)

Weather is perfect here so a good place to recover and he's on the balcony in a chair with a big cushion being nagged to do reverse kegals.

So yes a stricture was a new diagnosis!

Hope that answers the question

Regards

Clare

User
Posted 28 Mar 2017 at 16:50

Hi, Clare.

Now it is quite clear to me. Despite reading almost every post here I wasn't aware of this subject.

That's great, not only because of the fact that the procedure has gone ok but also because in case (crossing fingers) it didn't work good enough you can come back to conventional treatment.

Really glad for you both. Thanks for sharing, as anyone can take benefit of the knowledge you provide.

The best to you.

Just arriving in Madrid.
Love

Lola

User
Posted 28 Mar 2017 at 16:50

On the balcony in nice weather with a cushion ???
As much as I love the NHS , this is sounding great Clare. I'd be nagging you for a glass of wine whatever they said !!

User
Posted 28 Mar 2017 at 17:37

Ah Chris-,alchohol is number 1 enemy to the bladder for anyone wearing a catheter according to Susie the lovely American physical therapist! Not even green tea is getting passed me ( caffeine is number 2 enemy) . He did have steak and ice cream the night before as the prostate was getting a good ablation it didn't seem an unreasonable decision, he needs to be grateful lol!

Now if we could get sunshine on the NHS that would be a vote earning policy!

User
Posted 01 Apr 2017 at 15:04
Just an update.

FLA done on Monday to ablate large left hand side Gleason 6 tumour plus 2 small Gleason 6 tumours on the right hand side.

Catheter in for Monday, Tuesday and Wednesday night. Recovering near to centre in a hotel ( the clinic has a pop in open door policy but we have only needed to go when due.

Catheter out on Thurday, water drunk, urine passed, examined and taught to self Catherise and given bag of self Cath equipment plus jug for the 48 hour urine monitor.

A woke up Thursday night needing to pee and just couldn't so had to face up to putting in a temporary catheter.. Wasn't that bad( came pre lubed in its own bag which then became the 'catch bag' as the catheter went in... He filled it and was much relieved in both senses!

Friday morning he peed normally and the pressure of flow improved all day. No problems last night ( Friday evening) slept through and peed this morning..he is feeling slightly bloated so possibly mild retention?? Uncertain so will discuss at check up later.

Still on medication so no real idea what impact that is having

Antibiotic

Prednisolone

Cialis

Tamousilin

There is definitely 'life' in the form of semi erections but given the nerve bundles were not touched that is expected.

Back to drinking his green tea.. Thinking he should cut it out ( caffeine) whilst he is healing.

No blood in urine but warned in around 3 weeks time the prostate will start showing... signs if healing via the urine in the form of blood and scabs etc... Hmmm..

User
Posted 02 Apr 2017 at 02:09

Hi Clare,

Your reports make interesting reading. Seems that blood and dead cells can be expelled in the urine in a similar way to HIFU. Some men also get retention in this procedure although I was lucky in this respect.

Barry
User
Posted 02 Apr 2017 at 08:28
Hi Clare

Thanks for sharing the journey to date. It sounds like everything is going to plan, which must be so re-assuring after such a big decision.

Best regards

Chris

User
Posted 02 Apr 2017 at 08:36

Clare, great news!

Thanks for sharing the outdate. Wish everything continues to go like this.

On my part, awaiting the 25th for Paco's operation.

Best wishes,

Lola.

User
Posted 03 Apr 2017 at 20:02


Nothing much to report except pee flow getting stronger - now doing 400 ml which we understand is as good as it gets ... Pressure still lowest in morning but improving as day goes on. Slight internal pain still from time to time and ED no changes from the semi status! ( committed to 100% disclosure so sorry if it's tmi!)

Barry - that's interesting sounds very similar post procedure to the HIFU....

Chris - hope your recovery is going well

Lola - keep enjoying the Spring and the family time

Big shop at the chemist yesterday - v much cheaper than in the UK so took opportunity to stock up on low dose aspirin, vitamin D3, turmeric and milk thistle. Ben and Jerrys next door to hotel do a almond milk diary free ice cream - I think their profits are up this week! Shame we can't take this home ...
Regards

Clare


User
Posted 18 Apr 2017 at 20:28

update at 3 weeks post FLA

3.5 hour FLA done in the USA on 27th March
5th April flew home
10th April A was back at work
18th April erection strength best since 26th March (about 80%)

Current meds:

Tamousilin 1 tab at night

All other meds stopped (cialis stopped early due to side effects)

-no incontinence
-no getting up in night to pee
-flow still not back to full strength and still doing reverse kegels whilst peeing but improvement seen
-uncertain whether he is one of 30% to lose ejaculate completely as its just like post template biopsy re orgasming blood ( only tried the once post FLA)
-pre ejaculate now back after 2 week absence
-erection strength improving (took two months after template biopsy to recover)
-too early to judge if it was succesful re his PCa of course

For info

User
Posted 19 Apr 2017 at 06:09

Thanks for the updating, Claret.

The recovery seems to be going ok, so happy for you.

Best wishes to you both,

Lola.

User
Posted 27 Apr 2017 at 14:11

Hello,

Did your husband's da Vinci procedure go ahead as planned.

If so, hope everything went well.

 

User
Posted 27 Apr 2017 at 14:35

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 28 Apr 2017 at 00:04

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 21:53

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 20:38

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 21:09
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 21:40

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

User
Posted 05 May 2017 at 21:06
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 21:49

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

User
Posted 15 May 2017 at 09:06

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 09:28

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

 
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