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Biopsy but to what purpose?

User
Posted 02 Dec 2018 at 23:37

Had my deferred Template Biopsy last week but think it unlikely this will prove of any significance.  I will explain why.

I saw the surgeon prior to the procedure who was aware that the PSMA scan I had a few months back had only shown PCa in my Prostate but none outside it.  A subsequent MRI at UCLH had also shown a small tumour of about 2mm within the Prostate.  However, their team were puzzled why this was producing rising PSA at each test.  They thought there must be some PSA being generated elsewhere which had not been shown on the scans.  I accept this could be a possibility but migrated cancer cells are not going to be found from a biopsy. The surgeon said he would be very lucky to hit the 2mm tumour and when I asked whether it would be a 'Fusion' biopsy which would have helped, he told me they did not do them there.  I assume the purpose of trying to obtain a core from this small tumour is to assess how aggressive it is.  I was surprised to be told that only about 12 needles would be used in total of which most would be aimed at or close to the aforementioned 2mm tumour.  I would have thought that that whilst I was anesthetized they would have done a much more comprehensive coverage to check whether there were other tumours within my Prostate that may be adding to my PSA.  Perhaps I should have pressed for this but I felt disinclined to argue with the guy who was about to stick needles into me!

I did ask whether I would be given repeat HIFU for the 2mm tumour identified but was told this would be highly unlikely as it was in a position where it might cause "a hole in your bum that  might need one or two operations to rectify."  (I am aware that there is a risk of a fistula forming but this is more rare nowadays with HIFU).  I then said how about Cryotherapy?  I was told this would not be suitable.  So I then asked if there was another focal therapy that could be used - what about FLA? He said he hadn't heard of that. (Should a Surgeon at least know about treatments that can used for PCa if not in detail as an Oncologist?).

So what has all this achieved? I had to pay to have a PSMA scan privately which showed PCa in my Prostate but the MRI UCLH gave me was only done on a 1.5T scanner rather than the more definitive 3T scanner.  Then whilst the opportunity was there, a more comprehensive  template biopsy was not done to help establish whether there were other tumour(s) in my Prostate which may or may not have been significant.  I believe UCLH will only want me to be treated with HT which I don't want to have unless all other avenues have been pursued. I am of the opinion that UCLH only gave me the minimal biopsy because the Royal Marsden asked them if they could give me some further Focal treatment. which, from what the surgeon told me is most unlikely anyway. Whist I will have to wait to see what UCLH have to say, I get the feeling that I will have to seek a further opinion and possibly more aggressive treatment elsewhere. My philosophy is to eradicate known tumours within the Prostate and only then and in need treat systemically.

Any thoughts?

 

Barry
User
Posted 03 Dec 2018 at 01:54

I wonder if because you are 82 they have written you off?

I have friends aged 81 and 82 who are still working, they work out daily, ski the most extreme runs and captain their own 50’ and 62’ motor yachts, just two-up with their elderly wives.

Perhaps the medics feel intimidated by your superior knowledge of their specialty 😉.

Cheers, John.

Edited by member 03 Dec 2018 at 07:27  | Reason: Not specified

User
Posted 03 Dec 2018 at 13:40

I did watch a clip on YouTube of a template biopsy before my husband was about to undergo one and yes they put each sample on a numbered sample mat.. 

Best Regards

Ann

 

User
Posted 03 Dec 2018 at 14:27
On my TRUS circa 18 months ago each of the 12 samples had their own numbered tube

Ray

User
Posted 03 Dec 2018 at 17:13
Thank you for your thoughts. When I saw a consultant who is widely regarded as the top Focal specialist in the UK some months ago, he did say he did not want my Prostate that had previously been treated with radiation and HIFU to be subjected to further treatment. I did ask whether this was because of my age and was assured this was not the case. Whilst my strenuous sporting days are now behind me, I am sure I am fit enough to cope with further treatment and if they thought otherwise why did the Marsden suggest I hold back on HT and ask UCLH what further Focal treatment they could give me? As to the value of treating an elderly person, apart from my own well being and interests, I am a carer for a family member who is increasingly dependent on me and my demise or incapacity would add to the strain on other family members and social services.

Yes Ray, it is my opinion that UCLH are just going through the motions and only because of being prodded by the Marsden whose support I enlisted. The Marsden had previously told me that when PSA rises very slowly but persistently in cases like mine there is a strong possibility of there being cancer in the Prostate. This proved to be the case in 2015 when I first had HIFU and I am therefore surprised that a more extensive Template was not done this time in similar circumstances to look for further tumours than the one MRI had shown, while I was having the Template Biopsy if it is thought this in itself is unlikely to account for the rise in PSA.

Barry
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User
Posted 03 Dec 2018 at 01:54

I wonder if because you are 82 they have written you off?

I have friends aged 81 and 82 who are still working, they work out daily, ski the most extreme runs and captain their own 50’ and 62’ motor yachts, just two-up with their elderly wives.

Perhaps the medics feel intimidated by your superior knowledge of their specialty 😉.

Cheers, John.

Edited by member 03 Dec 2018 at 07:27  | Reason: Not specified

User
Posted 03 Dec 2018 at 08:17
Hi Barry

Unfortunately your thinking appears to be way ahead of the UK profession. When they understand quality of life needs to be brought to the table as well as cancer control maybe quicker progress will be made on focal therapy.

This new focal therapy trial using radiation looks most promising and of course they are still working on the vaccine.

For now however most men are having to opt to aim for cancer control and accept the potential QOL issues. Hopefully in the future the trifecta will be achievable for all:

- cancer controlled

- erectile function preserved

- complete continence retained

The more men demand new approaches the quicker it will happen. Interesting of all the patients this guy has seen you are the first to mention an FLA. How broadly can the guy be reading in his own discipline to have never heard of it!

I really hope it wasn’t age discrimination.

Thanks for the update and good luck

Clare

User
Posted 03 Dec 2018 at 08:31
I think your philosophy of dealing with known tumours is sound.

I repeatedly asked about dealing with my known tumours at biochemical recurrence to remove the problem areas.

The answers were always in the negative.

Ian

Ido4

User
Posted 03 Dec 2018 at 08:55

Originally Posted by: Online Community Member
I think your philosophy of dealing with known tumours is sound.
I repeatedly asked about dealing with my known tumours........

“.....as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns – the ones we don't know we don't know”

D. Rumsfeld, US Secretary of State.

Could equally apply to PCa as well, couldn’t it? 😉

Edited by member 03 Dec 2018 at 09:10  | Reason: Not specified

User
Posted 03 Dec 2018 at 13:06

Barry

Around 5 years ago I had  PSA test followed by Trus biopsy ,MRI ,bone scan and CT scan in that order, how things have changed. I remember after the biopsy the nurse showed me my samples all floating round together in a sample jar, question, with a template biopsy are the individual samples kept separate to analyse where the tumour or tomours are ?

Thanks Chris

User
Posted 03 Dec 2018 at 13:40

I did watch a clip on YouTube of a template biopsy before my husband was about to undergo one and yes they put each sample on a numbered sample mat.. 

Best Regards

Ann

 

User
Posted 03 Dec 2018 at 14:27
On my TRUS circa 18 months ago each of the 12 samples had their own numbered tube

Ray

User
Posted 03 Dec 2018 at 14:30
Barry

I keep looking for other thoughts but still in my mind is they only did enough to cover their NHS back.

Ray

User
Posted 03 Dec 2018 at 17:13
Thank you for your thoughts. When I saw a consultant who is widely regarded as the top Focal specialist in the UK some months ago, he did say he did not want my Prostate that had previously been treated with radiation and HIFU to be subjected to further treatment. I did ask whether this was because of my age and was assured this was not the case. Whilst my strenuous sporting days are now behind me, I am sure I am fit enough to cope with further treatment and if they thought otherwise why did the Marsden suggest I hold back on HT and ask UCLH what further Focal treatment they could give me? As to the value of treating an elderly person, apart from my own well being and interests, I am a carer for a family member who is increasingly dependent on me and my demise or incapacity would add to the strain on other family members and social services.

Yes Ray, it is my opinion that UCLH are just going through the motions and only because of being prodded by the Marsden whose support I enlisted. The Marsden had previously told me that when PSA rises very slowly but persistently in cases like mine there is a strong possibility of there being cancer in the Prostate. This proved to be the case in 2015 when I first had HIFU and I am therefore surprised that a more extensive Template was not done this time in similar circumstances to look for further tumours than the one MRI had shown, while I was having the Template Biopsy if it is thought this in itself is unlikely to account for the rise in PSA.

Barry
User
Posted 03 Dec 2018 at 17:36
Hi Barry,

Do you ever regret not having radical surgery back in 2007, and indeed was it ever offered to you?

Are you in any pain or discomfort resulting from your cancer currently?

Cheers, John.

User
Posted 03 Dec 2018 at 18:36

I'm no doctor but removing known tumours before systemic would be my much favoured path.  Especially if there are no traces anywhere else and/or it's well contained. How could they say otherwise.

It was my opinion at diagnosis that I wanted the op whatever they found and if there was only one area of spread to have RT or something on that.  It was  highly unlikely that I'd be allowed that on the NHS. But in my simple opinion a biggish tumour doing its stuff  is going to be worse than no tumour or a small spread.  People get treatment costing tens of thousands that only gives a few months extra so why not for prostate cases. Although perhaps tablets are less resource hungry than surgery or RT.

You've had an impressive amount of high tech treatment and it takes energy to keep pursuing it.  Interesting to see how you get on. All the best.

User
Posted 03 Dec 2018 at 20:37
Barry

At last consultant meet the comment was made a consistently high PSA (under 2) would be a worry. An uptrend trend would of course increase the concern level. It would seem the old nadir rule is now of lesser importance.

Ray

User
Posted 03 Dec 2018 at 22:16
John

When I was given my full diagnosis by the surgeon representing the MDT, he said he would operate if I really wanted him to but doubted very much that with my scan and T3A staging he could remove all the cancer. He suggested I would do better by having RT and indeed personally escorted me to an oncologist in a nearby office. I knew nothing about PCa and took the advice of the MDT as I think most would in the circumstances. It is true that in hindsight, had I opted for Prostatectomy and RT I would not have had to have had HIFU as salvage therapy for RT that had not worked long term and even after this some three years down the line be faced with the same situation again with some regrown cancer in the Prostate. This has to be set against potential risks and side effects of Prostatectomy that avoided. So hypothetically, looking back, on balance I might have done better to have gone with the Prostatectomy but had some of the side effects I have avoided so far. However, a man I know had a very similar diagnosis to me and he needed RT because his Prostatectomy was insufficient of itself. He had quite a hard time with his op and subsequent side effects and although he is doing well PCa wise 10+ years on, wishes he had had only the RT and avoided surgery and what that entailed despite his apparent end to his PCa. Where it has not worked and a man looks back regardles of the type of treatment, it is even more likely that he will think he might have done better with alternative treatment. But we are where we are and 'what ifs' serve no purpose.

I have no pain I can definitely attribute to PCa. The only possible thing is that when I wake in the morning I feel more uncomfortable than hitherto until I manage to pass wind. Whether this is due to pressure on my Prostate I do not know and have not mentioned it to my GP.

Peter

I don't think a financial saving on treatment cost is a major if maybe even minor consideration. The cost of an operation or whatever may largely (if successful), be counterbalanced by saving on HT, Chemo and other down the line treatments, oncologists and others time etc.

You are right that I have sought out and had been lucky so far in having had a lot of high tech treatment, most of which has been classed as 'experimental'. (I have been in 3 trials which have greatly reduced the financial cost to me). Unfortunately, there are no guarantees with anything at this point in time and the best we can do to improve outcomes is to have treatment in good time.

Barry
 
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