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Best and cheapest Prostatectomy

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User
Posted 26 Mar 2021 at 11:06

I have been diagnosed with high risk Prostate cancer but its localised.


Recommendation option and I think best option is reasonably urgent prostatectomy


Unfortunately NHS might take 6-8weeks and I'm concerned the cancer could spread and the window of opportunity for localised treatment might go.


I have a small insurance and some savings which might allow me to go private - but the range of prices is astounding from around £8-9K at Spire Liverpool for keyhole to £15-20K in London/Birmingham with the top range Da Vinci robotic surgery.


Can anyone advise me of consultants and quickest/best value for money etc - I can travel - I can't believe the prices for maybe 3-4 days in hospital and the operation.

User
Posted 27 Mar 2021 at 08:03

I was advised by my Glasgow surgeon to go private and go to Leipzig, Germany where one of the worlds best surgeons works. It’s where Scottish surgeons are trained. It cost me £10,000.


They have very good post op function reports. Also they do a thing called “frozen sections” which is basically having tissue specimens tested during the operation to make sure that they remove all the cancerous tissue.


They have also developed a way of stitching the urethra back on to the bladder which improves continence results.


I was fully continent at 6 weeks, full sexual ability took longer, around 6-7 months but everything works as normal now.

Edited by moderator 27 Mar 2021 at 08:44  | Reason: Mentioned a Doctor's name

User
Posted 26 Mar 2021 at 13:40
As others have stated, prostate cancer is very slow moving - it is easy to imagine it marching around your body unchallenged but it simply isn't like that. You have probably had this cancer for many years - another couple of months will make no difference.

As a point of reference, we paid £18,000 11 years ago but the motivation in our case was to get the surgeon we believed would give the best care, not for speed or type of surgery. Be aware that on top of the cost of surgery, we then had to pay for the pathology of the removed prostate, scans, etc and all subsequent PSA tests for a number of years (GP initially refused to have the responsibility transferred back to him / NHS) and we had no support from the usual NHS services such as district nursing, incontinence service, urology nurse specialist, etc. Getting a referral to the ED clinic was a major battle too.

Look at the wider and medium / long term implications rather than just the 6-8 weeks.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Mar 2021 at 14:44

Originally Posted by: Online Community Member
However I need to check the T2a - because if a they wouldn't have given me RHS and LHS gleason scores??


G6 (3+3) is the lowest possible grade and as Bollinge would tell you, many critical illness insurers refuse to pay out for G3+3. Also, it may be that the G6 found on your left side is very small; T2c is more often reserved for when significant amounts found on both sides. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Mar 2021 at 14:56
I don't think it is that simple though because there was also a 1 in 10,000 chance of that cell escaping yesterday or the day before or the day before diagnosis or 365 days in the last year. The fact is that even when diagnosed with an early stage, contained prostate cancer - on the day of radical prostatectomy there could already be millions of random cells settled around the body. Everyone goes into curative treatment hoping that this is not the case but we see on here how many men find out after surgery that they needn't have put themselves through it because it was already too late. On the basis that the cancer cells may have been developing for 10 years or more, another 12 weeks is neither here nor there.

And if a man has radical treatment that then fails, there will never be any way of knowing whether the escapee cells had made a bid for freedom before or after the meeting with the urologist. You are all playing Russian roulette before you are even diagnosed; you just don't know it.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Mar 2021 at 16:22
My urologist told me that the body constantly produces potentially metastatic cells, these are usually hoovered up by the bodies own immune system. The problem starts with the one it can't detect.

So it's all about "risk management" now you have detected the cancer especially a G5 the sooner it's treated the less risk you will be exposed to.

Have you considered the HT RT path?
User
Posted 27 Mar 2021 at 16:27

Originally Posted by: Online Community Member
"If someone put £20k on the table and a revolver with 1 in 10,000 chamber loaded would I play? More importantly would you play?"

Ever seen that powerful film, 'The Deer Hunter' ?


 


Best film ever even though I watched most of it from behind a cushion 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Mar 2021 at 11:00

If it was me I'd be tossing up between waiting and the £9k version.    Is it worth paying an extra £10k to have robotic surgery?   I was swept up with  the belief that robotic was the way to go a few years ago but the choice of more uncertainty, waiting longer and travelling 20 miles further made me stay with the non-robotic offer on the table.


When you say 6-8 weeks NHS, how long will the private treatment take.  I can completely understand your feelings being someone who wanted to be treated immediately.


Also the £9k might not be the end of it.  Check about who does after treatment and 5 years of blood tests.

Edited by member 28 Mar 2021 at 11:02  | Reason: Not specified

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User
Posted 26 Mar 2021 at 11:51

In 6-8 weeks your cancer is unlikely to be significantly more advanced than it is at present although I completely understand your sense of urgency. Have you considered asking for bicalutamide (or similar) to dissuade your cancer from getting ideas whilst you wait? I'm currently sitting on a T2c N0 M0 Gleason 4+3 intermediate risk bad boy (diagnosis in Jan) and I'm unlikely to see robotic surgery locally until June at the earliest. My consultant has me on bicalutamide 150 mg with a tamoxifen 20 mg chaser (to prevent gynaecomastia) whilst in the queue. Apart from the fatigue and the hot flushes it's not too grim.

User
Posted 26 Mar 2021 at 12:05
I wouldn’t worry too much about it. I was diagnosed in November and only had surgery in the following June, when I had found the right surgeon.

He charges twenty grand in his private clinic, but operated on me for ‘free’ on the NHS. You will be on a NHS fast track now anyway. The standard stay for my surgeon is one overnight, but I stayed a second because of a long drive home.

You say you have ‘high risk’ cancer. Did they give you a Gleason score: G- X+Y=Z, or a staging figure of 1-4? If you are Gleason 9 or 10 that is high risk, and the advice above to take the hormone Bicalutamide to buy some time is wise.

Even if you have a high grade cancer, they are usually slow growing, so I suspect your sense of urgency to splash out £20,000 is misplaced.

Give us more details of your diagnosis, and others here will pitch in.

Best of luck.

Cheers, John.
User
Posted 26 Mar 2021 at 12:10
Thanks for the reply much appreciated...I assume thats hormone treatment you're on?

I'm also a T2 but gleason is (as I understand) 4 + 5 on one side and 4 +2 on other - and although contained within the prostate I'm high risk....its a bit more advanced than yourself but I must admit I was never offered anything maybe because of the 'high risk'?

My concern is it will spread while waiting
User
Posted 26 Mar 2021 at 12:19
Hi Joe. With a T2 and a g5 in the mix have you discussed radiotherapy with an oncologist?

You would get the HT straight away and at 67 you are unlikely to see any of the side effects of RT which take 20+ years to appear IF they are going to.
User
Posted 26 Mar 2021 at 12:20

That's correct the bicalutamide blocks the androgen receptors and starves the cancer of testosterone. It's usually used to stop tumour flare from the initial jump in testosterone levels when someone starts with an LHRH agonist.

User
Posted 26 Mar 2021 at 12:21
Joe, it occurs to me that “best” and “cheapest” are unlikely to be the same.

I know waiting is difficult, but a two month delay is very unlikely to effect the outcome. It might be worth asking, though, if you could start HT as a holding measure to suppress the cancer while you do wait.

Best wishes,

Chris
User
Posted 26 Mar 2021 at 13:40
As others have stated, prostate cancer is very slow moving - it is easy to imagine it marching around your body unchallenged but it simply isn't like that. You have probably had this cancer for many years - another couple of months will make no difference.

As a point of reference, we paid £18,000 11 years ago but the motivation in our case was to get the surgeon we believed would give the best care, not for speed or type of surgery. Be aware that on top of the cost of surgery, we then had to pay for the pathology of the removed prostate, scans, etc and all subsequent PSA tests for a number of years (GP initially refused to have the responsibility transferred back to him / NHS) and we had no support from the usual NHS services such as district nursing, incontinence service, urology nurse specialist, etc. Getting a referral to the ED clinic was a major battle too.

Look at the wider and medium / long term implications rather than just the 6-8 weeks.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Mar 2021 at 13:51

Originally Posted by: Online Community Member
I can't believe the prices for maybe 3-4 days in hospital and the operation.


You would be paying for so much more than just that - the nurses, the anaesthetist, the anaesthetic, the oxygen, every member of the theatre team, the blood matching prior to surgery, the cost of sterilising the surgical equipment, any blood transfusion needed, every member of the recovery room team, the cost of transporting the removed prostate to a local lab, the pathologist's time, equipment needed to wax & process the gland for sampling, the writing of a report & producing images for the surgeon to review, pain relief post op, the catheter & spare bags, the wound dressings, the physio who comes to see you on the ward before you go home, pain meds to take home with you, time for the surgeon to read pathology report & draw conclusions, the follow up appointment .... 


I know much of this from the itemised bill we received after John's RP - including the cost of the catheter, the length of tubing and 1 day & 1 night bag :-/ 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Mar 2021 at 13:53
Just to add to Lyn's useful information, it's very much a postcode lottery. I had my treatment done privately on my work medical insurance and when I retired and the insurance stopped my oncologist simply transferred me from his private list to his NHS list and aftercare continued without a hitch. Definitely something to check if you do go private.

Chris
User
Posted 26 Mar 2021 at 14:19
Thanks for your advice - much appreciated - this has put a different slant on the situation

My Gleason scores were 4+5 RHS 3+3 LHS

Staging was T2a NO MO

However I need to check the T2a - because if a they wouldn't have given me RHS and LHS gleason scores??




User
Posted 26 Mar 2021 at 14:44

Originally Posted by: Online Community Member
However I need to check the T2a - because if a they wouldn't have given me RHS and LHS gleason scores??


G6 (3+3) is the lowest possible grade and as Bollinge would tell you, many critical illness insurers refuse to pay out for G3+3. Also, it may be that the G6 found on your left side is very small; T2c is more often reserved for when significant amounts found on both sides. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Mar 2021 at 14:55

Was the T2a N0 M0 based on an mpMRI by any chance? My initial stage from mpMRI was T2a/c which I took as "could be a, could be c". The biopsy that followed showed it was most certainly c. I'm wondering if only your 4+5 showed up on imaging (hence a) but the biopsy also found the "only just about cancer" 3+3. That's just me guessing of course! I had a PIRADS 4 on one side and PIRADS 3 on the other side - hence the radiologist hedging their bets...

User
Posted 26 Mar 2021 at 15:10

For your own peace of mind a short course of bicalutamide might be sensible. The cancer would be starved of fuel while you wait for surgery as others have said.

Ido4

User
Posted 27 Mar 2021 at 08:01
I would consider RT & HT. - It takes longer, but I feel is a better cure, is free, I can be started pretty soon.
User
Posted 27 Mar 2021 at 08:03

I was advised by my Glasgow surgeon to go private and go to Leipzig, Germany where one of the worlds best surgeons works. It’s where Scottish surgeons are trained. It cost me £10,000.


They have very good post op function reports. Also they do a thing called “frozen sections” which is basically having tissue specimens tested during the operation to make sure that they remove all the cancerous tissue.


They have also developed a way of stitching the urethra back on to the bladder which improves continence results.


I was fully continent at 6 weeks, full sexual ability took longer, around 6-7 months but everything works as normal now.

Edited by moderator 27 Mar 2021 at 08:44  | Reason: Mentioned a Doctor's name

User
Posted 27 Mar 2021 at 11:45

Just an observation, to make of what you will.


Whenever someone posts about a sense of urgency following a diagnosis, the advice is consistently to take your time, and very often people will point to the slow growing nature of prostate cancer cells and some may even say months & longer delays will assuredly make no difference.


But to my knowledge the process of mestastasis is imprefectly understood. Is it a process or an event? Does someone go from a local lesion to stage 4 overnight? If not how long does it take? I understand recent thinking is that distant seeding of metastatic tumours happens over a period of time and can be interrupted, such that the distant tumour becomes 'unviable' if the source is removed, but not always. 


I guess I'm saying that nobody really knows how long you have between gleason 9 cells emerging and their escaping, so your sense of urgency makes sense to at least one observer. 


Good luck with what you choose.

User
Posted 27 Mar 2021 at 13:56

Originally Posted by: Online Community Member


I guess I'm saying that nobody really knows how long you have between gleason 9 cells emerging and their escaping, so your sense of urgency makes sense to at least one observer. 



I agree more or less with sumdumbloke, but I would still not have a great sense of urgency.


I think once a secondary tumour is seeded it has no dependence on the primary tumour, contrary to what sumdumbloke says, but neither I or he is making any claim to know one way or the other for sure.


So my view on this is that every single day there is a one in ten thousand chance of a G9 cell escaping and seeding a viable secondary tumour. But it may be one in a thousand or one in a million, we don't know. I have done a bit of maths and I think 1 in 10,000 is a reasonable guess as the daily chance of the cancer metastising. 


So I would view the choice of spending £20k on surgery tomorrow vs £0 and having it in three months time as equivalent to playing Russian roulette not with a six shooter but with a 10,000 shooter and 9,999 Chambers are empty only one has a bullet. If you wait 90 days you have to play Russian roulette 90 times but you do save £20k. If you have HT you probably improve your odds by a factor of ten.


I don't know? If someone put £20k on the table and a revolver with 1 in 10,000 chamber loaded would I play? More importantly would you play?

Dave

User
Posted 27 Mar 2021 at 14:22
"If someone put £20k on the table and a revolver with 1 in 10,000 chamber loaded would I play? More importantly would you play?"

Ever seen that powerful film, 'The Deer Hunter' ?
Barry
User
Posted 27 Mar 2021 at 14:56
I don't think it is that simple though because there was also a 1 in 10,000 chance of that cell escaping yesterday or the day before or the day before diagnosis or 365 days in the last year. The fact is that even when diagnosed with an early stage, contained prostate cancer - on the day of radical prostatectomy there could already be millions of random cells settled around the body. Everyone goes into curative treatment hoping that this is not the case but we see on here how many men find out after surgery that they needn't have put themselves through it because it was already too late. On the basis that the cancer cells may have been developing for 10 years or more, another 12 weeks is neither here nor there.

And if a man has radical treatment that then fails, there will never be any way of knowing whether the escapee cells had made a bid for freedom before or after the meeting with the urologist. You are all playing Russian roulette before you are even diagnosed; you just don't know it.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Mar 2021 at 15:16

Yes I agree Lyn, I was thinking of adding that he had already been playing that game for a couple of years but just didn't know it, so yes already spun the magazine 700 times another 90 is no big deal, especially if he can get HT and improve the odds about ten fold. My post was getting a little long though.


Barry, I have only seen bits of the film, but it was very much at the top of my mind as I wrote the post. I must watch it all the way through now. 


 

Dave

User
Posted 27 Mar 2021 at 16:22
My urologist told me that the body constantly produces potentially metastatic cells, these are usually hoovered up by the bodies own immune system. The problem starts with the one it can't detect.

So it's all about "risk management" now you have detected the cancer especially a G5 the sooner it's treated the less risk you will be exposed to.

Have you considered the HT RT path?
User
Posted 27 Mar 2021 at 16:27

Originally Posted by: Online Community Member
"If someone put £20k on the table and a revolver with 1 in 10,000 chamber loaded would I play? More importantly would you play?"

Ever seen that powerful film, 'The Deer Hunter' ?


 


Best film ever even though I watched most of it from behind a cushion 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Mar 2021 at 11:00

If it was me I'd be tossing up between waiting and the £9k version.    Is it worth paying an extra £10k to have robotic surgery?   I was swept up with  the belief that robotic was the way to go a few years ago but the choice of more uncertainty, waiting longer and travelling 20 miles further made me stay with the non-robotic offer on the table.


When you say 6-8 weeks NHS, how long will the private treatment take.  I can completely understand your feelings being someone who wanted to be treated immediately.


Also the £9k might not be the end of it.  Check about who does after treatment and 5 years of blood tests.

Edited by member 28 Mar 2021 at 11:02  | Reason: Not specified

User
Posted 28 Mar 2021 at 11:21

Originally Posted by: Online Community Member
My urologist told me that the body constantly produces potentially metastatic cells, these are usually hoovered up by the bodies own immune system. The problem starts with the one it can't detect.

So it's all about "risk management" now you have detected the cancer especially a G5 the sooner it's treated the less risk you will be exposed to.

Have you considered the HT RT path?


that’s pretty much the state of play. My ex is an immunologist and works in cancer drug trials and told me almost the same. When mets break off they establish themselves in a new location effectively as a stem cell inducing angiogenesis etc We get mutations all our lives and these increase with age. Usually the immune system recognises these and mops them up but our immune system also tends to degrade with age.....

User
Posted 28 Mar 2021 at 16:03

Thank you very much for the information much appreciated and I will take it all on board. I guess the reaction is get the cancer out if the body ASAP and if I had to mortgage the house or take a loan so be it....the information you and others on this site has been tremendous and informative. I was not told a lot of this information by the consultant - I guess they can only say so much or I havent asked the right questions....obviously a lot to learn. Thank you. I have spoken to the prostate cancer uk nurses also who are great and very supportive. Maybe I will wait for the NHS to come through now.....thanks again 

User
Posted 28 Mar 2021 at 16:09

Normal mri .....

 
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