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experience with mpMRI fusion biopsy, neurosafe etc

User
Posted 22 Dec 2020 at 12:19

A month ago I had RARP. I am very pleased with my outcome. Hopefully my experience helps someone.   


A month on, all my wounds are almost completely healed. I am continent, back to the gym, feeling great and full of energy. E’s are taking a bit longer to get back to normal, but that’s the only side effect, and a small price to pay to be cured of cancer. 


Here is my story.


I’m in my early 60s and had my PSA rise to 6.


Poor decision: -   I had a bpMRI followed by a cognitive biopsy. This is the standard in Northern Ireland and probably standard in many locations.    


The 28 core (!) biopsy showed one single 4mm cancer in 2 cores. The urologist suggested I have another biopsy just in case. It seemed I had no need to worry, One small cancer caught early. WRONG!.     


Good decision:- Instead of agreeing to have another cognitive biopsy, I travelled to London and had an mpMRI fusion biopsy with contrast. It found SIX cancers.  


In November (5 months from the first biopsy) I had a Reizus sparing RARP with Prof E. I cannot speak highly enough of the surgeon, the Santis team and the after care.


The final histology of my prostate once removed showed SEVEN cancers. One was 18mm. Another  was less than 0.1 mm away from the edge. If I had trusted the first biopsy and waited, that cancer would have broken through, endangering my quality of life, and maybe life itself.


Here are my thoughts. Please bear in mind this is just one persons opinion...



  • Any higher than normal PSA needs investigation. If you decide to wait and see if the cancer grows, make sure your biopsy is as accurate as possible. Earlier surgery may be less invasive with a better outcome.

  • Biopsies are an imperfect diagnostic tool – however an mpMRI fusion biopsy with contrast is FAR more likely to tell the true story than a bpMRI with a cognisant biopsy.

  • Robot assisted surgery (RARP) should lead to faster recovery from wounds.

  • The surgery is difficult and complex. Many experienced surgeons now use the Retzius sparing technique, which is even more complex, but with less side effects. Choose your surgeon carefully if you can, the robot is only a tool.     

  • I choose surgery over radiotherapy since ....

    1. I wanted rid of the cancer. I didn’t want a graveyard of dead cancers inside me.

    2. I know RT can be still be done if I need it (but not the other way around)

    3. Later RT may be targeting early tiny dots since scanning is getting better all the time

    4. I have an assurance from my final histology that there was no cancer on the outside skin of my prostate.

    5. I worried RT can cause colon damage etc., later in life.



  • Neurosafe means that during the surgery as soon as the prostate is removed the outside skin is painted and checked microscopically for cancer by a pathologist who reports back to the surgeon while he is still operating. In my case the outside was clear even though the cancer inside was a fraction of a mm from the edge. Without Neurosafe the surgeon could not have been sure there was no microscopic breakout. The surgeon explained that because the outside was clear, it is likely I am completely cured, even though it was close to the edge. The final pathology confirmed the outside skin was clear.  


I believe that the decision to have a mpMRI fusion biopsy with contrast, and RARP with Prof E probably saved my life. It certainly saved my quality of life.


I had BUPA health insurance. Credit where its due, they have been excellent. I’m encouraging all my friends to do the same.


I appreciate many people will not be in a position to choose their treatment. However, if people are sufficiently informed to be able to ask questions, hopefully that may make a difference.  


Good luck all.


Wilson R

User
Posted 22 Dec 2020 at 17:18

Wonderful read and outcome for you. We have ‘met’ a man on another forum who had the exact same surgery with the same surgeon in June and fortunately to date he is doing great, his PSA is currently undetectable.


Best wishes for a peaceful Christmas and improved health in the New Year 🌹

User
Posted 22 Dec 2020 at 23:43

Great news Wilson. I had the same surgeon/procedure as you at London Bridge in November 2019.


An excellent outcome and hope you can relax for Christmas


simon 

User
Posted 22 Dec 2020 at 23:56

Another satisfied customer.


I have just sent Professor Whocannotbenamedhere his usual Christmas card from Moonpig, but this year it includes a graph of all my undetectable PSA tests since surgery in 2018.


Oh, and I also included a small can of WD40 as a Christmas drink for his sidekick robot Da Vinci...


Merry Christmas.


Cheers, John.

Edited by member 24 Dec 2020 at 11:29  | Reason: Not specified

User
Posted 23 Dec 2020 at 09:29

Many thanks for the kind words. I feel men may have more to fear from waiting for their cancer to get worse than they do from the treatment if they do their research.


A very Happy Christmas to everyone. 

User
Posted 23 Dec 2020 at 09:41

Totally. My local team and MDT recommended AS and not to rush into surgery. I had a gut feeling this wouldn’t work out well for me. I was lucky to find the Prof and when I learnt about the Retzius sparing RARP + NeuroSAFE seemed like a no brainer.


As it turned out my cancer was also very close to breaking out and much more extensive than the mpMRI/biopsy had shown so fingers crossed I got it done in time.


Histology showed clear margins...only time will tell I guess but finding one of the best high volume surgeons certainly gives one a favourable throw of the dice 🎲🍻


 

User
Posted 23 Dec 2020 at 10:05

GOSH, like me you had a lucky escape Techguy. Thank God you didn't listen to the doctors! Well done on makig the right decision. 


I wonder if prostate is the only cancer where its commonplace to advise people to leave a cancer untreated until it gets worse?


OK, I can understand AS when the person is in poor health or over 75.


However, given diagnostic tools are imperfect, I wonder if AS is wise for anyone fit and healthy and expecting to live another 20 years. 


If surgeries were more commonplace the surgical skills and therefore outcomes would improve. 


Of course, its a lot cheaper for the NHS if men choose AS instead of RARP with Retzius sparing and Neurosafe...  

User
Posted 23 Dec 2020 at 10:35

The prof said it very very close indeed. NeuroSAFE showed focal involvement but histology showed them clear so it was very close indeed. 


For me AS appeared to be like Russian roulette and at early stage seemed sensible to get it when potentially still localised. I did a fair bit of reading and some fairly recent research had data showing it’s possible (although rare) for type 3 prostate cancer cells to migrate....that was a deciding factor for me. Plus knowing that in ~45% cases post op histology upgrades the cancer type.


Cost is an interesting point. I think hesitancy up to now for intervention might be down to impact on quality of life but with newer surgical approaches the data supports the fact that this is being mitigated. Plus on a longer term view I’d say repeated biopsies under GA, scans and ultimately RT/chemo/RP etc would cost significantly more than early intervention. 

User
Posted 23 Dec 2020 at 11:04

In fairness, you are right, its probably not cost, but a combination of factors including the concern that a general or inexperienced surgeon doing RP (with or without the robot) may leave a man with worse QOL. Goodness knows there are horror stories out there. 


However, when I ask friends around my age whether they have had a psa, they say no, their doctor has not even suggested it.  The mainstream NHS pathway for prostate is a bit hesitant and uncertain. It would  be good if that changed.


I think a good pathway is clear with todays technology and knowledge and, yes, that would save money in the long run (as well as lives and QOL)    

User
Posted 23 Dec 2020 at 11:10
I think these comments are very misleading. AS is the right choice for many men, not just older men but also young men who don't want to become barren, impotent, incontinent before it is absolutely necessary. It is also suitable for men who haven't finished their family yet.

In nearly 11 years on this forum I have never seen anyone post that they had been offered AS and been concerned that it could be financial. More often, it is the forum members saying 'whoa, find out a bit more about AS before you rush down the radical treatment route"

Yes, there are other cancers where AS is offered as a viable option. The NHS leaflet to women due a mammogram includes information about AS and I have a colleague on AS for thyroid cancer. Many brain tumour patients also go onto AS, particularly if the tumour is small but hard to reach.

Promoting one surgeon as the best because you liked what he did for you is subjective. For the sake of balance, it should also be said that a) there are a couple of members of this forum who would disagree strongly b) I know that some urologists and oncologists disagree strongly c) we have one recent member who has had a recurrence despite neurosafe and d) retzius sparing reduces the risk of incontinence but even the pioneers of the technique acknowledge that it doesn't reduce the risk of ED.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Dec 2020 at 11:15
Plus surgical options will become less relevant. Uro-oncology experts around the world have been saying for years that RP will become an obsolete procedure; the new and emerging radiotherapies, cryo / brachy / proton / green laser etc will be the gold standards in the future.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Dec 2020 at 11:31
Thanks so much for the reply.



 

As I said at the beginning, my experience and thoughts are just one persons opinion and if they generate debate, that's great. 

 

Indeed I may be completely wrong and AS may be the right choice for younger men. However they need to balance the need to have a family with being around to enjoy them.  Not an easy decision and the more they can see both sides of the argument the better. 


I've already agreed that its probably not a financial decision. I can only say that I was offered AS and if I had accepted it, I believe I would have lost my QOL and maybe my life. 


Thanks for the info that there are other cancers where AS is offered as a viable option.


I hope I didn't promote one surgeon as the best, only that I was happy with my experience. I know I could have a recurrance despite neurosafe and retzius sparing. There are no guarantees in this horrible disease.


Thank goodness for this forum where I have learned so much, and thanks again for debating my point of view. The more points of view that are freely expressed, the more balanced the debate the better for everyone trying to make a decision. 




User
Posted 23 Dec 2020 at 15:18
I think cases like this where AS would have been wrong are probably less common than it sometimes appears, the successes are probably not highlighted.
In 2012 at age 58 following a TRUS biopsy after PSA 3.9 I was diagnosed with low volume PCa G6. I was offered surgery, RT or AS. After much research I decided on AS.
While on AS I have had 2 further TRUS biopsies which showed no significant change, and 8 MRIs which also have shown no changes.
My PSA initially rose reaching a peak of 8, and has now been stable at about 5 for the last 5 years.

I would say that AS is a very personal choice, and would not presume to advise anyone to follow this route. I just wished to add my experience for some sort of balance.

Alan
User
Posted 23 Dec 2020 at 17:35

Thanks Alan, your experience adds important perspective. 


What makes the AS decision difficult is that although PC is most often slow growing, it can be very aggressive.


I'm biased since I moved from a normal PSA to having a 7 cancers, one about to break out, within 10 months.  I am also blessed with a good outcome after RARP, and I know its difficult surgery so that's not always the case. 


I wonder how many men choose AS without knowing of the existence of mpMRI fusion biopsy or understanding the danger of metastasis.


My understanding is the only accurate pathology is that done after RP surgery and it normally upgrades the cancers Gleason score.


Sincere good wishes. Waiting means you'll hopefully benefit from ongoing improvements in treatments. 

User
Posted 23 Dec 2020 at 17:57

I completely agree AS (and RT RP or whatever) are very personal choices and depend on a persons personal circumstances.


I do hope that discussions such as this are helpful to anyone in the unfortunate position of having to make that decision. 

User
Posted 23 Dec 2020 at 17:59
Under NICE guidelines, no man on the NHS should be opting for AS without having an mpMRI, and the mpMRI should be repeated routinely.

It isn't true that prostate cancers are normally upgraded in the post-OP pathology; it is just as likely that the Gleason or staging will remain the same or be downgraded. It is just that we all tend to hear about the upgrades as these are often the men whose surgery was unsuccessful.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Dec 2020 at 18:20

I am reliably informed that as of November 2020, 56% of areas across the UK do not provide multi parametric-MRI scans to diagnose PC, including all of Northern Ireland. 


Its hard to see how any biopsy can find more than final pathology based on a removed prostate, but I could be wrong.  


 

User
Posted 23 Dec 2020 at 18:40

Wilson,


Indeed. My second mpMRI was done on a very new Philips 3T system that had only just been made available for mpMRI.


In my case a 20 core fusion guided TPM picked up five areas of Gleason 6. The Gleason 7 areas were too small to pick up via 3T mpMRI or biopsy. Imaging tech is good but is still evolving for the better. 


I have some knowledge of imaging systems and visualisation and was able to grab the image files to take home. My good lady has be very been the same since she viewed my nether regions in virtual reality πŸ€“πŸ€–


Matron makes some good balanced points. In my case I was told by two leading urological surgeons that upgrade probability with post op histology is generally accepted as 40-45%. But in my case it was felt to be nearer 60-70% which unfortunately was spot on. 


Radical intervention seemed the best option with multifocal disease and in my case best scenario was cure. Worse case I buy myself quality time until immunotherapy is more developed....an area where my ex is a clinical research team leader and runs early stage trials....her words ‘massive leaps are being made but we are not there yet’ 🀷🏼‍♂️


Onwards and upwards and may the PSA bloods remain ‘undetectable’ 🍻


 

User
Posted 23 Dec 2020 at 18:50

Onwards and upwards and may the PSA bloods remain ‘undetectable’    


Amen to that.


Hopefully mpMRI fusion biopsies will eventually become available to everyone. The more people are aware, the better.   

User
Posted 23 Dec 2020 at 21:32

Originally Posted by: Online Community Member


I am reliably informed that as of November 2020, 56% of areas across the UK do not provide multi parametric-MRI scans to diagnose PC, including all of Northern Ireland. 


Its hard to see how any biopsy can find more than final pathology based on a removed prostate, but I could be wrong.  


 



You will find this interactive map interesting - the vast majority of NHS Trusts offer mpMRI diagnostics to PROMIS standard but as you say, only one trust in Northern Ireland 


https://prostatecanceruk.org/about-us/projects-and-policies/mpmri


 


 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Dec 2020 at 23:39

Originally Posted by: Online Community Member


Its hard to see how any biopsy can find more than final pathology based on a removed prostate, but I could be wrong.  



Simple sampling theory. Suppose you have a Gleason 3 + 4 = 7 tumour in your prostate. That's mostly type 3 cells with a smaller component of type 4. If the type 4 cells are all clustered in one place and the biopsy needle goes straight through it, you might end up with a misleading sample showing more 4 than 3.


Then your biopsy might diagnose Gleason 4 + 3, which erroneously puts you in a higher risk category.

_____


Two cannibals named Ectomy and Prost, all alone on a Desert island.


Prost was the strongest, so Prost ate Ectomy.

User
Posted 24 Dec 2020 at 09:15

That makes sense, although surely its very important to know the most aggressive grade of cancer present. I don't see how a core biopsy could find a more aggressive grade than post RT pathology, but I can see how it could miss it.


Personally, I am just thankful that mine is miles away in a lab somewhere.   

User
Posted 24 Dec 2020 at 09:32

Originally Posted by: Online Community Member


That makes sense, although surely its very important to know the most aggressive grade of cancer present. I don't see how a core biopsy could find a more aggressive grade than post RT pathology, but I can see how it could miss it.


Agreed on the grades. I suppose there is the edge-case where different pathologists might differ in opinion?


 

_____


Two cannibals named Ectomy and Prost, all alone on a Desert island.


Prost was the strongest, so Prost ate Ectomy.

User
Posted 24 Dec 2020 at 12:23

Originally Posted by: Online Community Member


Originally Posted by: Online Community Member


I am reliably informed that as of November 2020, 56% of areas across the UK do not provide multi parametric-MRI scans to diagnose PC, including all of Northern Ireland. 


Its hard to see how any biopsy can find more than final pathology based on a removed prostate, but I could be wrong.  


 



You will find this interactive map interesting - the vast majority of NHS Trusts offer mpMRI diagnostics to PROMIS standard but as you say, only one trust in Northern Ireland 


https://prostatecanceruk.org/about-us/projects-and-policies/mpmri



I'm suspecting this concept may be going out of date.


A hospital near one of the support groups I run now preferentially does 3T MRI scans without contrast (bi-parameteric), and they're finding these at least as good as the 1.5T MRI scans with contrast. They now only do mpMRI scans when they can't get time on the 3T scanner. Another minor factor driving this is concern over a small number of gadolinium contrast reactions.


It would be good to see an update on this from PCUK.

User
Posted 24 Dec 2020 at 12:50
Yes but as far as I know there are still only 3 operational 3T scanners in England and one in Wales. Personally, I would like PCUK to campaign until every hospital trust in the country is working to PROMIS standard before they start campaigning for 3T - my worry is how trusts will find the money in the next few years to build large extensions to house the scanner in the way the Christie and Royal Marsden did.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Dec 2020 at 13:47

Originally Posted by: Online Community Member
Yes but as far as I know there are still only 3 operational 3T scanners in England and one in Wales.


Really? The hospitals attached to two of the support groups I run have them (Reading, and Mount Vernon/Paul Strickland), and I assumed they were not particularly unique in that respect.

User
Posted 24 Dec 2020 at 15:12

Andy,


Reading has a fairly new Philips 3T MRI system. Super fast and good image quality as I travelled to access it. For my scans they still used contrast via IV (mpMRI). Image quality is good as I compared it to previous GEC 1.5T system data. Maybe more artefacts etc A common saying apparently is... ‘if you want 50 interpretations or an MRI ask 50 radiologists’. 


UCLH also have 3T systems and one of the most respected radiologists in the UK as her skills are very well regarded.  London Bridge also have a 3T system.


Simon

User
Posted 24 Dec 2020 at 15:32

This is a good read. I started in ISUP Grade group 1 after biopsy and got upgraded to ISUP Grade group 2 after post RARP histology: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6798468/

User
Posted 24 Dec 2020 at 17:56
I started off T2a, but after the post-op biopsy I was β€˜upgraded’ to T3aN1M0.

Anyway, so far so good!

Merry Christmas to you all.

Cheers, John.
User
Posted 24 Dec 2020 at 18:23

Cheers John! 🍻πŸ₯‚πŸΎ Remember to share the wine with your loveliness πŸ€”πŸ‘€πŸ‘»


Merry Christmas one and all! πŸ»πŸŽ…πŸ»

User
Posted 25 Dec 2020 at 00:27

The top focal urologist in the UK and highly regarded further afield says that the Prostate is the last remaining organ where it is removed in it's entirety as a matter of course. (There are of course cases where this is necessary). He contends that AS and if needed focal therapy as alternatives can help preserve function. It is known that many men who have radical treatment do not benefit from it and if not treated would have gone on to die of something else. This is called 'overtreatment'. About half of men over 50 years of age have (a) tumour(s) in their Prostate but it is only the significant ones that need to be treated. Therefore, each case should be considered and dealt with on individual assessment rather than rush into radical Prostatectomy.


I really recommend this video is viewed :- https://www.youtube.com/watch?v=2kRTwBJ8ehY


 

Edited by member 25 Dec 2020 at 00:28  | Reason: to highlight link

Barry
User
Posted 25 Dec 2020 at 11:26

I wouldn't disagree AS and if needed focal therapy are alternatives to RP.


I also wouldn't disagree they can help preserve function, that RP is not always successful or necessary.


I also would not disagree that most men over 50 years of age have tumour(s) in their Prostate but only the significant ones need to be treated.


I definitely agree each case should be considered and dealt with on individual assessment rather than rush into radical Prostatectomy.


HOWEVER, from personal experience I would say that RP can be the right choice (it was for me) and does not necessarily mean a poorer quality of life. 


 

 
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