Hello again Ramuk.
My husband was on AS for a year before his PSA started to rise and it was decided that he should go for treatment. He was absolutely certain that he didn't want the operation with all its possible side effects so opted as I told you in a previous post for permanent seed Brachytherapy.
As Lyn also pointed out in your previous enquiry, there is a difference between Active Surveillance and watchful waiting so please make sure that the hospital and yourselves are talking about the same thing.
Active Surveillance is careful monitoring with PSA test and usually an annual biopsy. Watchful waiting is as far as I know just the PSA tests and is usually for the man with other health issues which would make the harshness of some PC treatments much worse.
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The following is taken from this website's help page:
QUOTE:
The difference between watchful waiting and active surveillance
Watchful waiting is often confused with active surveillance, which is another way of monitoring prostate cancer. The aim of both is to avoid having unnecessary treatment, but there are key differences between them.
Watchful waiting
If you do have treatment at any point, it will usually aim to control the cancer rather than cure it.
It’s generally suitable for men with other health problems who may be less able to cope with treatments such as surgery or radiotherapy, or whose cancer may never cause problems during their lifetime.
It usually involves fewer tests than active surveillance. These check-ups usually take place at the GP surgery rather than at the hospital.
Active surveillance
If you decide to have treatment at any point, it will usually aim to cure the cancer.
It is suitable for most men with cancer that is contained in the prostate (localised cancer), and who could cope with treatments such as surgery or radiotherapy if they needed it.
It usually involves more regular hospital tests than watchful waiting, such as prostate biopsies and magnetic resonance imaging (MRI) scans.
__________________________________
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
User
Hi,
I have been on AS for almost 4 years, my diagnosis is G6 with PSA initially just under 4.
I have to date had 3 TRUS biopsies and 4 MRI scans. All biopsies have shown low volume PC in one side of the prostate, nothing has shown up on the MRI scans.
I chose AS to avoid the possible side effects of RP or RT which were both offered.
My initial reaction on diagnosis was "get rid of it", but after discussion with my urologist, specialist nurses and my wife decided on the AS option.
AS is not for everyone, you must be confident that any changes are picked up quickly enough to be treated.
I am lucky at my hospital to have superb specialist nurses, and a urologist who is very approachable and always fully explains anything I need to know.
In my opinion for AS to work you have to be confident that any progression will be correctly detected and actioned. To achieve this you must have confidence and trust in the team providing the treatment.
You must also be willing to take a role in the management of the treatment. Making sure PSA tests are carried out at the right times, and making sure appointments are made at the right time. I have found that hospital administrators see AS as low priority ( "its only a check up" ), and try to delay appointments.
I have never regretted my choice, it is right for me.
As I am sure you know every case is different, and everyone has to make their own choice on treatment.
Regards
Alan
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User
Hello again Ramuk.
My husband was on AS for a year before his PSA started to rise and it was decided that he should go for treatment. He was absolutely certain that he didn't want the operation with all its possible side effects so opted as I told you in a previous post for permanent seed Brachytherapy.
As Lyn also pointed out in your previous enquiry, there is a difference between Active Surveillance and watchful waiting so please make sure that the hospital and yourselves are talking about the same thing.
Active Surveillance is careful monitoring with PSA test and usually an annual biopsy. Watchful waiting is as far as I know just the PSA tests and is usually for the man with other health issues which would make the harshness of some PC treatments much worse.
__________________________________________________________
The following is taken from this website's help page:
QUOTE:
The difference between watchful waiting and active surveillance
Watchful waiting is often confused with active surveillance, which is another way of monitoring prostate cancer. The aim of both is to avoid having unnecessary treatment, but there are key differences between them.
Watchful waiting
If you do have treatment at any point, it will usually aim to control the cancer rather than cure it.
It’s generally suitable for men with other health problems who may be less able to cope with treatments such as surgery or radiotherapy, or whose cancer may never cause problems during their lifetime.
It usually involves fewer tests than active surveillance. These check-ups usually take place at the GP surgery rather than at the hospital.
Active surveillance
If you decide to have treatment at any point, it will usually aim to cure the cancer.
It is suitable for most men with cancer that is contained in the prostate (localised cancer), and who could cope with treatments such as surgery or radiotherapy if they needed it.
It usually involves more regular hospital tests than watchful waiting, such as prostate biopsies and magnetic resonance imaging (MRI) scans.
__________________________________
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
User
Hi,
I have been on AS for almost 4 years, my diagnosis is G6 with PSA initially just under 4.
I have to date had 3 TRUS biopsies and 4 MRI scans. All biopsies have shown low volume PC in one side of the prostate, nothing has shown up on the MRI scans.
I chose AS to avoid the possible side effects of RP or RT which were both offered.
My initial reaction on diagnosis was "get rid of it", but after discussion with my urologist, specialist nurses and my wife decided on the AS option.
AS is not for everyone, you must be confident that any changes are picked up quickly enough to be treated.
I am lucky at my hospital to have superb specialist nurses, and a urologist who is very approachable and always fully explains anything I need to know.
In my opinion for AS to work you have to be confident that any progression will be correctly detected and actioned. To achieve this you must have confidence and trust in the team providing the treatment.
You must also be willing to take a role in the management of the treatment. Making sure PSA tests are carried out at the right times, and making sure appointments are made at the right time. I have found that hospital administrators see AS as low priority ( "its only a check up" ), and try to delay appointments.
I have never regretted my choice, it is right for me.
As I am sure you know every case is different, and everyone has to make their own choice on treatment.
Regards
Alan
User
Hi Alan
See my profile.
I had a easy decision.
May I ask do they give you a breakdown on free / unbound PSA value. I have a 69 year old brother in Australia on AS and has had no biopsy to date.
Will your decision come if Gleason moves to 7.. or MRI. indicates movement towards capsule edge.
I can emphasise as you seem similar age and PSA history date adjusted very similar to mine. I had rp and don't look back. I was surprised and quite shocked when told post op it was T3. I'm an IT background guy. So tend to look at issues . Gathering facts. However I still don't know . Where my tumours were exactly positioned .. how many. Did the single biopsy target these areas.
Etc etc. I had visions perhaps naively that the gland had been 3d modelled.. . Maybe that is the private . Gold service. I can not fault nhs. However brother is Australia has full page MRI analysis and can access info online if he requires. His lesions are rated and mapped. He is actually having a biospy. His first next month. Unfortunately the technology doesn't appear to be there yet to scan at cell level.
May I ask. Have your biopsies been as uneventful as they can be. All the best
User
Hi Ramuk
I have been on active surveillance for over 4 years.
I have 3 monthly PSA, yearly MRI scans , and yearly Out Patients appointments.
I had a Gleason score of 3+3 = 6 from a TRUS biopsy.
A further TRUS biopsy showed no change
I have also had a template biopsy which was negative.
Therefore active surveillance suited me, and was being carried out appropriately. I am on what they term a" PSA tracker" which ensures I do not miss the blood test. My PSA is over 11, but has been around this for nearly 2 years.
My prostate has now become quite enlarged, and I have been asked to consider other options , as the symptoms of that enlargement are having a bigger impact on my life.
As others have said ,if they are carrying out active surveillance correctly, it can be the most appropriate way to go. But its an individual decision you make after obtaining the information you need , without overwhelming yourselves.
All the best with your decisions, but it does not appear you have to rush into one.
I dont know if anyone has mentioned the fact sheets which are available from prostate cancer uk and are very helpful.
User
Originally Posted by: Online Community MemberHi Alan
See my profile.
I had a easy decision.
May I ask do they give you a breakdown on free / unbound PSA value. I have a 69 year old brother in Australia on AS and has had no biopsy to date.
Will your decision come if Gleason moves to 7.. or MRI. indicates movement towards capsule edge.
I can emphasise as you seem similar age and PSA history date adjusted very similar to mine. I had rp and don't look back. I was surprised and quite shocked when told post op it was T3. I'm an IT background guy. So tend to look at issues . Gathering facts. However I still don't know . Where my tumours were exactly positioned .. how many. Did the single biopsy target these areas.
Etc etc. I had visions perhaps naively that the gland had been 3d modelled.. . Maybe that is the private . Gold service. I can not fault nhs. However brother is Australia has full page MRI analysis and can access info online if he requires. His lesions are rated and mapped. He is actually having a biospy. His first next month. Unfortunately the technology doesn't appear to be there yet to scan at cell level.
May I ask. Have your biopsies been as uneventful as they can be. All the best
Hi
Looked at your profile, and in your situation would certainly have gone for a radical treatment option.
As far as I am aware I have no family history of PC, so hopefully that works in my favour.
My PSA tests have all been simple PSA, no bound/unbound breakdown. My PSA does vary a bit, so I have a test every 3 months. PSA is showing a slow upward trend, but so far has not been a cause for concern for me or my urologist. At my last appointment I mentioned that maybe I could continue AS and go from one of the 50% in their 50s to one of the 80% in their 80s, but my urologist said I should expect to need some treatment sometime in the future.
I have so far had 3 TRUS biopsies, after the first I developed an infection and spent a week in hospital on IV antibiotics. The others have been uneventful, with a little bleeding for a while after the procedure. First biopsy had very low volume G6 in 2 of 10 cores, second low volume G6 in 3 of 14 cores, and last G6 in 1 of 14.
I have also had 4 MRI scans which have shown nothing outside the prostate, and also showed nothing in the prostate.
Regard
Alan
User
Hi Ramuk (and others...)
As an 8+ years 'veteran' of AS/WW (never quite sure which - and neither are 'they'!) I only pop up on the forum very occasionally these days. A quick glance at the profile would instantly explain why I've never been exactly typical of those who choose to decline active treatment, despite the 'numbers' that might suggest I've been some combination of being extremely unwise - or just possibly, ahead of the curve in continually assessing the risk balance as favouring the do-nothing option (in my particular case) despite often severe ongoing issues . Life here in limbo-land actually seems quite normal these days, despite not infrequently shocking a few people with the everyday details of managing the condition .....
As always, deciding against doing everything possible to eradicate a known cancer ('pussycat' or otherwise...) remains immensely controversial, but it always remains an intensely personal decision. The extent of thinking time and/ or detailed research before reaching a decision is likewise an individual judgement - but now with the benefit of a reasonably extensive perspective, I'd venture the honest opinion that not everybody has necessarily been served well by the system ; Many have been rushed into rapid and irrevocable decisions with life-changing effects. The obvious riposte is that there's nothing quite so life-changing as death, so why isn't the treatment decision essentially a no-brainer .... but all these very sincere arguments on both sides have been played out so many times on the pages of this forum, not for me to repeat them ad nauseum.
Incidentally, another reason why I faded away from regular forum participation is that the 'new' system - which I and several other regular users were invited to help specify in the early stages - has always posed a number of difficulties for me. Initially this was simply a technology issue, the combination of creaky old PCs and very poor internet service in the rural backwaters of northeast Scotland , and this remains a barrier. More fundamentally, I've never succeeded in re-establishing anything like the 'helicopter view' of what's going on within the new system , that was so easily achievable with the old format, even for a technophobe numpty. I believe that quite a few old-stagers have fallen away in recent times, and not always for strictly medical reasons.... or, it may well simply be me ! Perhaps I just need some expert coaching ?!!
Cheers / David
'It couldn't possibly happen to me....' |
User
Ah Flyboy, always good to see you popping up. If you were my father or brother I would probably be tearing my hair out but I really do admire your stoic approach.
Stay well, my friend
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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