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Has Active Surveillance failed me?

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User
Posted 04 Jan 2015 at 21:12

Hi, this is my first post and any advice would be helpful. I've been on A S since November 2010, after a routine PSA test showed 5 ish which was a bit too high. ( no symptoms other than slight incontinence when driving, lifting etc with a full bladder.) Referred to Urology, DRE revealed no abnormality, but TR biopsies ordered, 'to be on safe side'. Result - all clear, so just another PSA test. Unfortunately' PSA now 8, so more TR biopsies, which this time showed 2/12 cores positive, 3+3, cT0. Was offered Active Surveillance which I agreed to with an MRI scan which showed no abnormality.

The next 4 years of 3 monthly blood tests showed PSA always between 6 and 8.4 and annual TR biopsies clear with no signs of malignancy. Urologist was confident there was no problem, and I still was symptomless. When the latest biopsies became due I asked if I could have an MRI instead (simply because it doesn't hurt as much.) Doc agreed, had the MRI and then I was called in for more TR biopsies because MRI showed major changes with 2010 scan.

I was called in to discuss the results. Latest biopsies were clear, no signs of malignancy. Yet MRI indicated malignancy escaping the prostate capsule into seminal vesicle classified T3b. MDT meeting recommended radical prostatectomy preceded by pattern biopsies under general anaesthetic. I agreed, and was offered open surgery at FGH Barrow, keyhole surgery at Preston RI, or Robotic surgery at The Christie, Manchester. I've seen [name removed by Moderator] re Laparotic surgery. He says, No, a T3b tumour gives only 30% success with no recurrence with high risk of permanent urinary incontinence. so he recommends radiotherapy.

I'm seeing [name removed by Moderator] at The Christie on Wednesday re robotic surgery. If he is confident, and offers it, what do I do?

Thanks for reading,

David.


 

Edited by moderator 04 Jan 2015 at 21:33  | Reason: Not specified

User
Posted 04 Jan 2015 at 22:58

As the wife of a man who opted for surgery only to find it didn't get it all and then have to have radiotherapy & hormone therapy anyway, I would say ask for a referral to an oncologist to discuss RT / HT before you decide. I would be asking both the surgeon this week and the onco when you see one 'Why put yourself through an unnecessary operation, with all the potential side effects & risks, if you are going to end up needing RT anyway'?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Jan 2015 at 09:31

Hello Mr. T and welcome.

Can't offer advice as have no experience of what you are going through (apart from active surveillance for a year.)

Lyn and many others on here have the experience though so hang on and I am sure somebody else will come along and offer their twopennoth.

Perhaps, having been on active surveillance for so long, you have already downloaded the "Toolkit" from this site, available through the publications tab ?

There may be things in there on reading it that rise questions you could ask.

Good luck and Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 05 Jan 2015 at 13:23

Hi Mr T,

You did well to ask for an MRI scan as biopsies showed nothing but if the reading of the MRI scan has been correctly interpreted it does indicate that radical treatment is warranted. Was the MRI done on a 1.5 Tesla machine which is still most widely used or the 3 Tesla? If the former, your idea of getting another MRI on the machine giving better definition seems a good one and may help establish more precisely the extent of the tumour. (It is possible that you might have to pay for this if it is not offered).

Whether to accept the greater risk of incontinence with surgery, with in need back up RT or just go for the RT only option is a matter only you can decide ultimately. RT may well be supplemented by HT. Get as much profession advice as you can and do your research on outcomes which you are most probably doing anyway.

As to your question on whether AS has failed YOU, you may feel that it could have worked better for you if the MRI had been given earlier rather than relying on Biopsies. If you have not had an an MRI for the best part of 4 years this view appears justified. Biopsies do not always show the cancer and sometimes MRI's also do not show the cancer but the chances of finding it are clearly better, if still not 100% if both tools are used.

Barry
User
Posted 05 Jan 2015 at 16:00

I opted for RP as it was believed my cancer was contained. However, as Lyn says, if the cancer has escaped the prostate, you will probably need RT at some stage. Best of luck in whatever decision you make.

Paul

Stay Calm And Carry On.
User
Posted 05 Jan 2015 at 19:53

Hi David I was in your position recently and decided on surgery ,I asked the RT consultant if they would remove my prostrate if RT failed he told me some do but not this area but if surgery did not clear all RT would be on offer ,he did warn me that with my results there was a 50/50 chance of needing RT and I do have two appointments this month one with surgeon follow on from op and the other with RT consultant so under no illusions that it looks like RT is required ,I have had no symptoms at all .all the best on your decision Andy

User
Posted 09 Jan 2015 at 09:09

Good luck with the Template Biopsy Mr. T.

You may have already thought about it, indeed it might not work, but perhaps obtain a "Doughnut" or ring cushion for sitting on for the journey home.
It might help take the pressure off of your underneath parts.

Just a thought anyway.
All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 09 Jan 2015 at 11:04
Hello Mister T
On reading your initial message I was reminded of my own qualms about AS when I was at the point of decision following diagnosis. I turned it down and went straight for intervention. I have documented my own journey in my own conversation thread.

You ask whether you were let down. It seems to me that it is arguable that you were. Not that it helps you much. However For others also considering AS I feel that your case illustrates one of my own decision making concerns. It is this: The tests that can be performed only 'sample' what is going on in your body. They are necessarily incomplete as is illustrated by the seeming inconsistency between some of your tests (for example biopsy and MRI). We rely on the interpretations of this incomplete knowledge made by highly experienced and competent professionals. Statistically they mostly get it right but it is inescapable that in any particular case they may be in error - due either to the incompleteness of data or the fallibility of interpretation. Hence we as patients must gamble based on our 'belief' in the accuracy of advice we receive. When considering AS, the gamble is about whether a worsening of the situation will be detected in good time to keep the most favourable treatment options open. I decided not to take the gamble. My decision of course leads to its own consequences.

Finally I would like to express my sincere hope that from now on things improve for you as best they can.
User
Posted 09 Jan 2015 at 18:18

Active surveillance conducted properly in line with NICE guidelines is still the best option for many men, for all sorts of reasons.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Jan 2015 at 21:26


I think Kennt has summarised AS well though Lyn is correct that if monitored correctly AS has enabled many men to avoid or at least defer radical treatment and consequential side effects, though for some, treatment may be instituted rather later than it should have been. It is understandable that many men are not prepared to risk waiting.

I am aware that many hospitals do not yet have a 3Tesla MRI scanner but am surprised that The Christie does not have one. Paradoxically, The Christie, a very major Hospital, is one of the two UK hospitals selected to have the expensive and advanced Proton Beam machine due to be treating patients in 2017/18. That said the 1.5 Tesla machine still does a useful job. Incidentally, 7 Tesla machines and above are on test in labs but not yet used in hospitals as far as I am aware. In a similar way, we have standard TV, High Definition (HD) TV and very recently super high definition TV (SHD) known as 4K. Unsurprisingly, the cost of this better definition imagery, whether for scanners or TV adds very considerably to the capital cost.


A template biopsy though still not 100%, provides a much better chance of finding any cancer than the more usual random ones.


Let us know how it goes.

Edited by member 09 Jan 2015 at 21:28  | Reason: Not specified

Barry
User
Posted 26 Feb 2015 at 23:28
David
Joyous news, do not under any circumstances feel guilty just feel incredibly blessed. Every man true to himself and every woman without exception on this forum would say the same thing.
Now celebrate and enjoy your great fortune , for life itself is better than any other riches.
xx
Mo
User
Posted 27 Feb 2015 at 01:11

Hi David,


Really pleased for you, that really good news.  Long may it continue.


Best Wishes,


Steve

User
Posted 27 Feb 2015 at 08:55

Great news David, very pleased for you, as indeed will everyone else I'm sure.

Good news like yours gives encouragement to others

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 27 Feb 2015 at 09:14

Very encouraging for you and shows how much depends on the interpretation of MRI scans.

Barry
User
Posted 27 Feb 2015 at 09:44

Fantastic news, David. So pleased for you !


 


Fiona.


 

User
Posted 27 Feb 2015 at 10:33

Good news posted for all to see and share gives everyone else hope.

Have a good weekend.

dave

Show Most Thanked Posts
User
Posted 04 Jan 2015 at 22:58

As the wife of a man who opted for surgery only to find it didn't get it all and then have to have radiotherapy & hormone therapy anyway, I would say ask for a referral to an oncologist to discuss RT / HT before you decide. I would be asking both the surgeon this week and the onco when you see one 'Why put yourself through an unnecessary operation, with all the potential side effects & risks, if you are going to end up needing RT anyway'?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Jan 2015 at 09:31

Hello Mr. T and welcome.

Can't offer advice as have no experience of what you are going through (apart from active surveillance for a year.)

Lyn and many others on here have the experience though so hang on and I am sure somebody else will come along and offer their twopennoth.

Perhaps, having been on active surveillance for so long, you have already downloaded the "Toolkit" from this site, available through the publications tab ?

There may be things in there on reading it that rise questions you could ask.

Good luck and Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 05 Jan 2015 at 11:04

Thank you Lyn and Sandra. I can't get my head round how 4 out of 5 TR biopsies come back clear, whilst an MRI shows advancing disease. My latest PSA showed 7.9 reducing from 8.4 three months ago. I suppose that I'm hoping that the MRI is being mis-read, but probably clutching at straws.

I agree that putting myself through surgery, with the associated risk of long term side effects, only to end up with RT or HT anyway, doesn't make much sense. But, if Robot Man is confident that he can get it all with minimum risk, I am inclined to go for it. I'm also going to ask for another MRI scan with The Christie's possibly more sophisticated equipment, if only to confirm my previous MRI result.

I'm trying to be proactive here, and I feel so fit and well I'm perhaps in denial. So we'll see what Wednesday brings.

Thank you.

David.

User
Posted 05 Jan 2015 at 13:23

Hi Mr T,

You did well to ask for an MRI scan as biopsies showed nothing but if the reading of the MRI scan has been correctly interpreted it does indicate that radical treatment is warranted. Was the MRI done on a 1.5 Tesla machine which is still most widely used or the 3 Tesla? If the former, your idea of getting another MRI on the machine giving better definition seems a good one and may help establish more precisely the extent of the tumour. (It is possible that you might have to pay for this if it is not offered).

Whether to accept the greater risk of incontinence with surgery, with in need back up RT or just go for the RT only option is a matter only you can decide ultimately. RT may well be supplemented by HT. Get as much profession advice as you can and do your research on outcomes which you are most probably doing anyway.

As to your question on whether AS has failed YOU, you may feel that it could have worked better for you if the MRI had been given earlier rather than relying on Biopsies. If you have not had an an MRI for the best part of 4 years this view appears justified. Biopsies do not always show the cancer and sometimes MRI's also do not show the cancer but the chances of finding it are clearly better, if still not 100% if both tools are used.

Barry
User
Posted 05 Jan 2015 at 16:00

I opted for RP as it was believed my cancer was contained. However, as Lyn says, if the cancer has escaped the prostate, you will probably need RT at some stage. Best of luck in whatever decision you make.

Paul

Stay Calm And Carry On.
User
Posted 05 Jan 2015 at 19:53

Hi David I was in your position recently and decided on surgery ,I asked the RT consultant if they would remove my prostrate if RT failed he told me some do but not this area but if surgery did not clear all RT would be on offer ,he did warn me that with my results there was a 50/50 chance of needing RT and I do have two appointments this month one with surgeon follow on from op and the other with RT consultant so under no illusions that it looks like RT is required ,I have had no symptoms at all .all the best on your decision Andy

User
Posted 09 Jan 2015 at 08:33

My consultation with the Robotic Surgeon went as expected, in that he has offered a radical prostatectomy if he deems it necessary after further extensive investigation to be carried out at The Christie.

He did not seem convinced that disease is progressing as indicated my my recent MRI scan result.

I'd taken a copy of the MRI report which he read, frowned a few times, said that it was possible that the scan was detecting inflammation only (the report did mention chronic inflammation), that it would be extremely unusual for so many negative biopsies to be returned if progressive disease is present, and If indeed, there is involvement of a seminal vesicle, he would expect PSA levels of 25>. (my most recent is 7.9).

He took the MRI report off, consulted with a colleague who specialises in biopsies, and informed me that the recommendation is a Template Biopsy with further TR biopsies if necessary, to be carried out under GA at the Christie. The Template would include samples of the seminal vesicles.

The next stage of treatment would be determined by the biopsy result, and he did stress that if further treatment is necessary, RT may still be the recommendation.

So, I'm on the waiting list for a Template Biopsy (2 to 3 months) and the prospect of an extremely uncomfortable 100+ mile journey home.

For Barry - The Christie also use the 1.5 Tesla.

David.

User
Posted 09 Jan 2015 at 09:09

Good luck with the Template Biopsy Mr. T.

You may have already thought about it, indeed it might not work, but perhaps obtain a "Doughnut" or ring cushion for sitting on for the journey home.
It might help take the pressure off of your underneath parts.

Just a thought anyway.
All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 09 Jan 2015 at 11:04
Hello Mister T
On reading your initial message I was reminded of my own qualms about AS when I was at the point of decision following diagnosis. I turned it down and went straight for intervention. I have documented my own journey in my own conversation thread.

You ask whether you were let down. It seems to me that it is arguable that you were. Not that it helps you much. However For others also considering AS I feel that your case illustrates one of my own decision making concerns. It is this: The tests that can be performed only 'sample' what is going on in your body. They are necessarily incomplete as is illustrated by the seeming inconsistency between some of your tests (for example biopsy and MRI). We rely on the interpretations of this incomplete knowledge made by highly experienced and competent professionals. Statistically they mostly get it right but it is inescapable that in any particular case they may be in error - due either to the incompleteness of data or the fallibility of interpretation. Hence we as patients must gamble based on our 'belief' in the accuracy of advice we receive. When considering AS, the gamble is about whether a worsening of the situation will be detected in good time to keep the most favourable treatment options open. I decided not to take the gamble. My decision of course leads to its own consequences.

Finally I would like to express my sincere hope that from now on things improve for you as best they can.
User
Posted 09 Jan 2015 at 12:24

I, too, was offered AS, although not as a first option. Even if it had been, I would have wanted to deal with it straight away. We're all different, but it would never have been an option I'd have taken.

Paul

Stay Calm And Carry On.
User
Posted 09 Jan 2015 at 18:18

Active surveillance conducted properly in line with NICE guidelines is still the best option for many men, for all sorts of reasons.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Jan 2015 at 21:05

Don't disagree Lyn, but psychologically I would never have coped with all the wondering how it was developing.

Stay Calm And Carry On.
User
Posted 09 Jan 2015 at 21:26


I think Kennt has summarised AS well though Lyn is correct that if monitored correctly AS has enabled many men to avoid or at least defer radical treatment and consequential side effects, though for some, treatment may be instituted rather later than it should have been. It is understandable that many men are not prepared to risk waiting.

I am aware that many hospitals do not yet have a 3Tesla MRI scanner but am surprised that The Christie does not have one. Paradoxically, The Christie, a very major Hospital, is one of the two UK hospitals selected to have the expensive and advanced Proton Beam machine due to be treating patients in 2017/18. That said the 1.5 Tesla machine still does a useful job. Incidentally, 7 Tesla machines and above are on test in labs but not yet used in hospitals as far as I am aware. In a similar way, we have standard TV, High Definition (HD) TV and very recently super high definition TV (SHD) known as 4K. Unsurprisingly, the cost of this better definition imagery, whether for scanners or TV adds very considerably to the capital cost.


A template biopsy though still not 100%, provides a much better chance of finding any cancer than the more usual random ones.


Let us know how it goes.

Edited by member 09 Jan 2015 at 21:28  | Reason: Not specified

Barry
User
Posted 27 Jan 2015 at 20:44
Just a quick update.

I'm at The Christie tomorrow, 28th, for pre-op assessment, if all's well, Thursday 5th Feb for template biopsy, then return for results on Wed 25th.

Can't fault the service.

David.
User
Posted 26 Feb 2015 at 23:15
So, the answer is that Active Surveillance hasn't failed, but the MRI scan seems to have been seriously misinterpreted.

The result of my Template Biopsy is PCa in both sides of the gland, but extremely localised, with no involvement of the seminal vesicles. Gleeson score 6.

There seems to have been little or no progression since initial diagnosis in 2010.

A total of 120 biopsy cores were sampled and examined, and the low number of positives leads the surgeon to decide that a radical prostatectomy is not justified, but he will refer me for Radiotherapy if I wish. The alternative is a return to AS but based on PSA blood tests with no more TR biopsies - my Prostate has been "biopsied to death" after 5 annual TR procedures and now a Template Biopsy, so should be left alone to recover.

I've decided to resume AS, with the Surgeons instruction that should my PSA rise to 15 anytime in the future, I'm referred for RT.

So, I haven't got a T3b tumour with spread into a seminal vesicle, I've got a chronically inflamed prostate, and the surgeon was absolutely right to be suspicious of the MRI reported result.

Of course I don't know what my future holds, but for now I feel so fortunate, and almost guilty that i've been so much luckier than most.

Best wishes to everyone.

David.
User
Posted 26 Feb 2015 at 23:28
David
Joyous news, do not under any circumstances feel guilty just feel incredibly blessed. Every man true to himself and every woman without exception on this forum would say the same thing.
Now celebrate and enjoy your great fortune , for life itself is better than any other riches.
xx
Mo
User
Posted 27 Feb 2015 at 01:11

Hi David,


Really pleased for you, that really good news.  Long may it continue.


Best Wishes,


Steve

User
Posted 27 Feb 2015 at 08:55

Great news David, very pleased for you, as indeed will everyone else I'm sure.

Good news like yours gives encouragement to others

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 27 Feb 2015 at 09:14

Very encouraging for you and shows how much depends on the interpretation of MRI scans.

Barry
User
Posted 27 Feb 2015 at 09:44

Fantastic news, David. So pleased for you !


 


Fiona.


 

User
Posted 27 Feb 2015 at 10:33

Good news posted for all to see and share gives everyone else hope.

Have a good weekend.

dave

 
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