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HoLEP and PCa

User
Posted 22 Jan 2016 at 19:38

Having been diagnosed with a Gleason 6 (3+3) following a report on the tissue removed during a HoLEP procedure at the beginning of November last year, I was very keen to learn the result of the PSA test carried two weeks ago.

 

The result has come in at 0.3 which is massive drop for me when I'd been hovering around the low teens for a couple of years.

 

Whether the HoLep managed to get all the PCa or not will be revealed some time during the next couple of months when a Multi-parametric MRI is carried out.

 

So for the time being its still regular PSA tests as part of AS and if things start to move upwards again it will be decision time.

 

It does beggar the question that if a HoLEP procedure can remove up to a half of the prostate tissue contained within the capsule, would it be feasible to remove all of the tissue using this procedure and deal with localised PCa in a manner that avoids all the risks of of an RP i.e. ED, double/single incontinence when nerve sparing is not achieved.  Just a thought!  

 

Obviously, the risk of penetrating the capsule during such a procedure would be present but with a very experienced HoLEP surgeon at the helm so to speak, I think it would be possible to avoid such an incident.

Edited by member 25 Jan 2016 at 15:28  | Reason: Not specified

Roger
User
Posted 24 Jan 2016 at 10:25

Hi Chris/Woody

I wasn't having a dig at you or anyone else on here when I referred to fewer advice givers, just a fact that's obvious to those of us who have frequented these forum pages for many years. There shall be others who come along to follow in the footsteps of those who were the knowledgeable ones but it will take time. Personally, I daren't venture down that road and limit sharing my knowledge to that of what I've learnt because of my experiences and research into that which has or could affect me.

Please don't stop sharing your experiences and knowledge with the forum. It is up to each individual reader to draw their own conclusions on the information being provided and entirely down to them as to how they act upon it and if lively discussion then ensues, so much the better.

Some of the discussions on here a few years ago would get quite heated but out of those discussions grew an understanding of how people had a different take on an issue and usually peace would eventually reign after a couple of the forum's "elder statesmen" had stepped in. Happy days!

Regarding spread of PCa via surgery/ biopsies, it's something I have always been concerned about since my first set of biopsies and the reason I refused further biopsies. At that time (almost 10 years ago) there was little by way of peer reviewed research published on the matter and I was often berated by the medical professionals I tried to discuss it with and I got short shrift on here from fellow forum users when I expressed my concerns.

What research that has taken place over the intervening years is out there for anyone to find and read and that is all I'm going to say on the matter and would wish to draw a line under the subject as I don't wish to cause any further unnecessary concern.

I've always tried to avoid expressing my opinions on medical matters on here and I should have stuck to my self made rule and my apologies if I have caused concern in this case.

Head below parapet for a while again I think!

Roger
User
Posted 24 Jan 2016 at 11:33

Woody, the urologists wouldnt still be doing TURPs if there was any evidence that it spreads the cancer cells. It is a procedure that shouldn't be done unnecessarily (is there any procedure that should be done for no reason?) but can make a massive difference to some men's comfort and quality of life.

Rog has waited many years for this diagnosis and has made decisions that others might find hard to imagine or agree with. But please don't let that cause you any additional anxiety about your own treatments.

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

User
Posted 21 Nov 2020 at 12:27

Hi Roger and all

To cut a long story short; I had another episode of urinary retention in mid 2019 and decided to 'sign up' for HoLEP. I had a pre-op assessment in August and waited and waited then Covid arrived. I then had a further episode of retention three months ago so a few weeks later I emailed Addenbrookes to check that I was still on the list. I was told that I could still expect a long wait. 

Then, out of the blue, I had a phone call from the waiting list manager to say that 'Mr A' had reviewed my case and could I come in for surgery on the 17th of this month. There followed another assessment and a visit to Newmarket for a Covid test and I had surgery last Tuesday attended to by the top man.

So far all is well, no pain at any stage but still some blood.

I will keep you updated.

David

 

 

 

 

 

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User
Posted 23 Jan 2016 at 21:52

Hi Roger, welcome to this site. It is the best place to be for getting all the info and advice, good news on your PSA result.

As far as HoLEP goes, there is an American medical facility offering treatment that supposedly can remove all the inside tissues of the prostate, then the capsule is pushed into the bladder and somehow reduced then this can be removed and tested for PCa. This is supposedly a better option than a TURP (Trans Uretheral Resection of the Prostate) but is done under general anasthetic with only one day in hospital.

Apparently there are no adverse side effects apart from retrograde ejaculations, which happens in the majority of cases.

I would have thought that there would be the chance of cancer cells being spread around the bladder and further afield and quite probably this would be the reason for it not being offered as a treatment.

Someone else may come up with a better explanation or reasoning but agree with you that the possibility is there if the surgeon is experienced that it could be, maybe, trialed somehow. Who knows what will be available in years to come with research producing new treatments all the time.

Regards Chris/Woody

Life seems different upside down,take another viewpoint

User
Posted 23 Jan 2016 at 22:38

Ah Woody, Rogcal is probably one of our longest standing members of the forum, having joined many years ago on the basis that something must be causing his high PSA.

It seems that the cancer has finally shown its face Roger - good to see that your most recent test showed a drop

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

User
Posted 23 Jan 2016 at 23:30

Thanks for the response Chris/Woody and hello Lyn.

I have been keeping tabs on everyone from time to time and it makes a change to be "active" again, in the sense that I am contributing again albeit in a limited way. Some of the old timers on here may well recall my concerns in respect of biopsies and TURP being a potential risk of PCa spread and it was for that reason I avoided both like the plague after my initial biopsies 10 years ago and regular offers of a TURP.

The HoLEP for me was a way to resolve my BPH, massively enlarged prostate and all that goes with that i.e. retention, frequency, bladder stone formation and not risking PCa spread via the venous system, as the laser zaps everything and cauterises at the same time.

I'm happy that I now have a definitive diagnosis as it makes it easier to plan ahead which was something denied to me when in a constant state of not knowing if anything lurked within.

It is pleasing to see that much support is still available on the forum particularly to the "newbies" who join the forum but saddened that the ranks of the "knowledgeable" advice givers have been whittled down over the years which is inevitable given the nature of PCa and I wonder if the forum will ever find replacements of the calibre we had on here in previous years. One can only hope!

I would raise a glass of red wine to everyone on here who may be facing a tougher battle than others on here but it seems alcohol is getting a bashing of late, something that would have Old Al turning in his grave. Now there was a character!

Roger
User
Posted 24 Jan 2016 at 09:27

Hi Roger (and Lyn). I do try to contribute and give advice where I can and yes I do have limited knowledge being a relative newbie so my experiences are not as deep as some of the others on here. I had a TURP last year and unfortunately it has made no difference to my problems but amid now concerned about poss "spread" after reading about your doubts Roger. Is there a basis for this? Has there been known cases of spread afterwards?

I will never be as knowledgable as some others but sometimes I feel that I can input something?

regards Chris/Woody

Life seems different upside down,take another viewpoint

User
Posted 24 Jan 2016 at 10:25

Hi Chris/Woody

I wasn't having a dig at you or anyone else on here when I referred to fewer advice givers, just a fact that's obvious to those of us who have frequented these forum pages for many years. There shall be others who come along to follow in the footsteps of those who were the knowledgeable ones but it will take time. Personally, I daren't venture down that road and limit sharing my knowledge to that of what I've learnt because of my experiences and research into that which has or could affect me.

Please don't stop sharing your experiences and knowledge with the forum. It is up to each individual reader to draw their own conclusions on the information being provided and entirely down to them as to how they act upon it and if lively discussion then ensues, so much the better.

Some of the discussions on here a few years ago would get quite heated but out of those discussions grew an understanding of how people had a different take on an issue and usually peace would eventually reign after a couple of the forum's "elder statesmen" had stepped in. Happy days!

Regarding spread of PCa via surgery/ biopsies, it's something I have always been concerned about since my first set of biopsies and the reason I refused further biopsies. At that time (almost 10 years ago) there was little by way of peer reviewed research published on the matter and I was often berated by the medical professionals I tried to discuss it with and I got short shrift on here from fellow forum users when I expressed my concerns.

What research that has taken place over the intervening years is out there for anyone to find and read and that is all I'm going to say on the matter and would wish to draw a line under the subject as I don't wish to cause any further unnecessary concern.

I've always tried to avoid expressing my opinions on medical matters on here and I should have stuck to my self made rule and my apologies if I have caused concern in this case.

Head below parapet for a while again I think!

Roger
User
Posted 24 Jan 2016 at 11:33

Woody, the urologists wouldnt still be doing TURPs if there was any evidence that it spreads the cancer cells. It is a procedure that shouldn't be done unnecessarily (is there any procedure that should be done for no reason?) but can make a massive difference to some men's comfort and quality of life.

Rog has waited many years for this diagnosis and has made decisions that others might find hard to imagine or agree with. But please don't let that cause you any additional anxiety about your own treatments.

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

User
Posted 24 Jan 2016 at 16:19

Roger, thanks for that do not get under the parapet just because of me, Injust wondered if you knew something that was worth sharing.

Cheers Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 24 Jan 2016 at 16:20

Lyn, thanks for your comments and understand where you are coming from.

Many thanks, Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 06 Jul 2017 at 15:57

Thought I'd give a brief update on where I am on the PCa front since my HoLEP some 20 months since the procedure.

The latest MRI shows no new features since the last one carried out in April 2016 and PSA appears to have plateaued at 1.1.

Still urinating well with no hesitation, retention, urgency or dribbles and best of all no sign of any UTIs whatsoever.

I'm not taking anything for granted though and shall continue with my modified Jane Plant diet plus organic pomegranate juice, saw palmetto, vitD3 and selenium.

Best wishes to everyone and keep up the fight.

Roger
User
Posted 21 Jun 2019 at 14:26

Hi

I am possibly one of the 'old-timers' mentioned above; I was diagnosed with PCa in 2004 and had a number of conversations over the following years regarding active surveillance which was, and still is, my preferred method of treatment. I had not been on the forum for some years until a few days ago.

I realise this is a rather old thread but having recently had a re-occurrence of acute urinary retention due to my enlarged prostate I have been advised to consider a TURP or HOLEP procedure.

Like Roger I am concerned about the treatment spreading the cancer but everything I read suggests it is very low risk.

I would be interested to hear from Roger (if he is still active on the forum) how he is getting on some three years plus after treatment.

David 

User
Posted 21 Jun 2019 at 15:03

Hi David.

Yes, I'm still lurking in the forums corridors.

All good from my point of view with my PSA at 1.6 where it has stayed for over a year.  Having discussed this slight rise with the Uro he puts this down to normal prostate cell regrowth and nothing more sinister and I concur.

All the issues I experienced with BPH are history and no sign of UTIs, bladder stones, nocturia, hesitation or frequency.  It's great to be in total control and not be limited in where I go and how long I can travel.

There has been one issue that may have some bearing on the HoLEP and that is a stricture near the bladder neck that a Uro encountered when passing his laser equipment up my urethra to a kidney which needed an amalgamation of calculi removed which was done so successfully.  

He told me he had had some difficulty getting the catheter that allows access for the laser, camera and irrigation system beyond this stricture which he believed was as a consequence of the HoLEP which in my case had removed the apex and some of the two lobes with the apex being closer to the bladder neck.

I'd never heard of this "side effect" and have not read about it on any of the forums where HoLEP is discussed.

It can only be that when procedures such as the one I describe above are carried out, this issue is discovered however, the affect on my flow from this stricture has been of no consequence whatsoever and I could still stand in for "Niagara Falls" should a film company so require.

Go for the HoLEP David, it's the Gold Standard as far as I'm concerned but don't forget to do plenty of pelvic floor muscle exercises for at least a month before the procedure and like myself you should have great bladder control with just a small amount of dribbling for a day or two.

As for AS, I shall remain monitoring the situation and should it look as though I may need further treatment for my PCa I'll make that decision then.  There is still the possibility to be consider that the HoLEP removed all the PCa but that only happens to other people not me, so I'll live with the other possibility that it shaved some off and left some behind which is currently behaving itself.

Good luck with your decision whichever way you choose to go.

 

Roger
User
Posted 21 Jun 2019 at 15:11

Thanks Roger

It's good to speak to someone who has had the treatment and a few years follow-up - I will approach my next consultation with greater confidence. I am fortunate in being in the care of Addenbrookes Hospital in Cambridge which offers some of the best surgeons in the business.

I will keep you posted!

David

 

User
Posted 21 Jun 2019 at 15:18
I was lucky enough to have the top man in the country (and Addenbrookes) do my procedure and if you can get him then "job done", so to speak but anyone who trained under him and has a few HoLEPs under their belt, then equally good.

Roger
User
Posted 21 Jun 2019 at 15:42

Hi Roger

If you have nothing better to do, I see all my original posts from years ago are still on the site under the name 'davewill'. (I lost my login details and had to start again this week!) a search will bring most of them up but quite a few were private conversations. Another vote for Addenbrookes then!

David

 

 

User
Posted 21 Jun 2019 at 17:18
Hi Roger

Looked at your profile and thought blimey your PSA record goes back a long time then it dawned on me so does mine -:) We have to remain unbeatable if only to defy the stats so carry on doing well.

Ray

Hope your feet are dry

User
Posted 21 Jun 2019 at 17:47
Quote: "Hope your feet are dry".

Ha bloody ha, who was it that ran away from Skegness because of the encroaching sea and left us poor sods on the Fens to deal with real flooding.

Your mention of stats struck a chord with me, as when it comes down to it that's all we are on a database somewhere.

I always wanted to be a statistic on Camelots database as a major winner.

I miss the old forum and its characters but not saying there are none on this one, only that there seems to be something missing from the exchanges now.

Keep well and keep on providing statistics for those that collect them, if only to keep them in a job. :)

Roger
User
Posted 21 Jun 2019 at 17:53

I found your profile Dave under your previous forum name but not all your conversations (all 77 of them)😊

When I find the old forum I'll commence Chapter One. 😃

 

Roger
User
Posted 21 Jun 2019 at 18:31

Good to see you posting Dave - here is one of your old threads which I thought might be useful for newer members considering or already on AS but feeling a bit twitchy about it!

https://community.prostatecanceruk.org/posts/t7586-Decision-Time#post69432

 

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

User
Posted 21 Jun 2019 at 22:24

Hi Roger

If you search 'davewill' and read conversations you will find my first post in April 2005

David

 

User
Posted 21 Nov 2020 at 12:27

Hi Roger and all

To cut a long story short; I had another episode of urinary retention in mid 2019 and decided to 'sign up' for HoLEP. I had a pre-op assessment in August and waited and waited then Covid arrived. I then had a further episode of retention three months ago so a few weeks later I emailed Addenbrookes to check that I was still on the list. I was told that I could still expect a long wait. 

Then, out of the blue, I had a phone call from the waiting list manager to say that 'Mr A' had reviewed my case and could I come in for surgery on the 17th of this month. There followed another assessment and a visit to Newmarket for a Covid test and I had surgery last Tuesday attended to by the top man.

So far all is well, no pain at any stage but still some blood.

I will keep you updated.

David

 

 

 

 

 

User
Posted 21 Nov 2020 at 16:00
Sounds all very good to me David and no pain which is how it was for me.

I'm sure you were warned about avoiding heavy lifting or straining your abdominal muscles for at least 2 weeks and I strongly advise you heed this warning.

I ignored the warning on day nine following my HoLEP and paid the penalty big time when the wound scab came away and I hemorrhaged very heavily which required a weeks stay on the uro ward at Boston.

If not already you'll soon be peeing like an 18 year old, enjoy.

All the best for a trouble free recovery.

Roger
User
Posted 21 Nov 2020 at 16:41

Hi Roger

It's good to talk to you and thanks for the warning. I am taking it very easy although my wife is allowing me to continue with my usual washing up and tea making!

Seriously, I will be careful, it is so easy because of the lack of any pain to think one can get back to normal very quickly.

Take care in these difficult times.

David

P.S. We live twenty minutes from Addenbrookes which is convenient as we are spending too much time there between us.

User
Posted 21 Nov 2020 at 16:48

Hi again

I meant to say for the benefit of anyone reading this conversation that I spoke to 'Mr A' last year in reference to the danger of my prostate confined cancer being spread by the HoLEP procedure and he was confident that the surgery did not have that effect.

David

User
Posted 21 Nov 2020 at 17:04
Washing up and tea making are very therapeutic and should be regarded as pastimes not chores. Do you wear a pinny?

I found the buses that use the guided busway a godsend when attending Addies for consultations. Park car opposite bus stop in St Ives then a comfortable ride to a stop outside Outpatients or Scanning. What could be simpler.

As you are aware, the tissue removed during the procedure will go for histology and you will learn the latest on what your PCa is up to within a week or so. When the wizard of the laser rang me to give the report on my removed tissue he ended with "there's no way of knowing if all of the PCa will have been removed during the procedure but a good percentage will have."

Only time and follow-up MRIs will show but either way I found his words gave me a big psychological boost at the time and something I still hang my hat on when I get my latest PSA results which generally remain stable.

Roger
User
Posted 21 Nov 2020 at 17:09

Now I know what to put on my Christmas list!

David

User
Posted 21 Nov 2020 at 21:55
Just don't forget you're wearing it when you answer the door!
Roger
User
Posted 07 Aug 2021 at 14:47

Hi

I don’t know if anyone is still following this very old thread, but here goes;

Following my H0LEP surgery last November my three-month review in February was cancelled and I finally had my review appointment last Monday.

I had a brief but productive chat with Mr A, the lead HoLEP surgeon at Addenbrookes and left him with a copy of the ‘diary’ which I have kept since the day of the surgery. I hope he will find it useful as my recovery process has sort of followed the text-book pattern with one or two interesting variations which I will not bore you with.

The most important aspect to mention for anyone contemplating this procedure is that, at no time have I suffered any pain. During the healing period urinating was, on occasion, a little uncomfortable but that passed fairly quickly. Blood in my urine also ceased after a while, as expected.

It took nearly six months for my system to settle down. Frequency and night-time urination have not altered dramatically but hopefully, acute urinary retention is unlikely to re-occur. My PSA dropped after surgery from an average of 4.0 (really 8, as I was on Finasteride) to 0.4.

Mr A recommended a course of tablets to help my still over-active bladder which he assures me should offer a marked improvement over the next two – three months.

David  

 

 

User
Posted 07 Aug 2021 at 15:35

Pleased to read your progress is textbook and from all accounts will cotinue to do so.

How is "Mr A"?  I haven't spoken with him for quite a while and keep meaning to drop him a line.

 

Roger
User
Posted 07 Aug 2021 at 15:47

Hi Roger

I am not displeased with the outcome of the surgery but perhaps I expected more improvement in flow and frequency. Still, after the past eighteen months one should be glad to be well and active.

I only saw Mr A briefly on the day of the surgery and we had a ten minute 'chat' on Monday, he said he was pleased with the results of the procedure and I felt he was professional and willing to listen.

David

 
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