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Does AS increase chances of bad after effects

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User
Posted 02 May 2020 at 11:44

HI Guys


Having recently being diagnosed with a 3+4 TCC which I believe is confined (as in not spread anywhere else yet) can anyone tell me if surgery without any AS time would potentially result in a better end result (more nerves left intact) less chance of incontinence or ED or provided it continues to be confined does it not make any difference as they remove the whole thing anyway?


If anyone has had any advice previously I would appreciate any information prior to me speaking to my appointed surgeon on Monday


Thanks in advance


 

User
Posted 02 May 2020 at 13:07
It should make no difference, assuming the AS is done properly and active treatment is started before the cancer progresses. Some men are able to stay on AS for the rest of their lives, for others treatment is needed within months and sadly there are a smaller number of cases where the cancer progresses unnoticed and it becomes a bit too late for surgery.

Having said that, if you meant to write that your diagnosis is G7(3+4) T2c I would think very, very carefully about AS - with elements of 4 and cancer on both sides of the gland, you don't exactly come into the ideal group for AS. If you meant T1c that is a bit different but it would depend a lot on how many positive cores you had and what % of each core was cancerous.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 May 2020 at 00:23

Hi


See my profile. I've also just posted to Lee.


My lesions  were multifocal , to this day I've never asked exactly what was found where, or requested all my medical notes.


Back in 2015 I didn't know much at all.   It  did surprise and shock us when I was told  it was starting to trangress the capsule .   So how long is a piece of string ? As Lyn posts  it depends what is growing where and how fast ?  Everyone is unique  .  It could be years before any of us needed to take action.    To this day I don't know if I left it 6 months too late or  made decision too early.    From my outcomes , whether it was just luck , I seemed to have a surgeon who did a fantastic job.  


AS has specific criteria as you know .  Effectively I was doing that by monitoring PSA , I wasn't having DRE .  Maybe it was a 'gut feeling'   . I only had 1 biopsy,  which incidentally was overall more painful that the RARP.    If AS is right for you, stay on it for as long as you feel comfortable mentally.


Gordon

Edited by member 03 May 2020 at 00:37  | Reason: Not specified

User
Posted 03 May 2020 at 03:41
My friend, who is G3+4=7 - I don’t know any more about his tumour(s) - is doing very well on AS, and has been for five years. He has the very closest monitoring, with annual mp-MRI tests, urologist consultations and PSA tests quarterly. He also opts for any new-fangled tests that come out (he pays privately).

So with your Gleason score, AS is a possibility, and if available, you might like to go for that as long as you are advised you can get away with it. Although as Gordon mentioned, if you can cope with having cancer psychologically. Actually, that’s what we all do, because even after having prostate cancer treated or removed, there is no guarantee it won’t recur months or years later!

I would seek a second opinion from a urologist and/or an oncologist on the feasibility of an AS programme, and if you proceed, make sure you are subject to a strict and rigorous testing regime as outlined above.

Best of luck.

Cheers, John.
User
Posted 03 May 2020 at 15:02

Gordon's point is crucial - AS has to be done properly, not half-baked. Done correctly, you would have 3 monthly PSA test, annual DRE and annual MRI with additional MRI if the PSA rises. My father-in-law was supposed to be on AS but they refused to do any scans because his PSA was falling rather than rising; he died within 4 years of diagnosis with multiple mets to soft organs that had not been spotted until 24 hours before he died.


There are not so many active members on here following AS these days - we used to have a fair few. You would find more cases and stories like yours by joining YANA - an Australian site originally set up by a member of this forum but now worldwide.


https://www.yananow.org/ 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Jun 2020 at 00:45
I think with the most recent PSA result, I would be okay with a normal MRI - at least they have agreed to do the scan 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Jul 2020 at 21:22
It means that your prostate is quite large, your PSA density suggests that there is no cancer, and the mpMRI could see no sign of cancer in the prostate or the lymph nodes.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 02 May 2020 at 13:07
It should make no difference, assuming the AS is done properly and active treatment is started before the cancer progresses. Some men are able to stay on AS for the rest of their lives, for others treatment is needed within months and sadly there are a smaller number of cases where the cancer progresses unnoticed and it becomes a bit too late for surgery.

Having said that, if you meant to write that your diagnosis is G7(3+4) T2c I would think very, very carefully about AS - with elements of 4 and cancer on both sides of the gland, you don't exactly come into the ideal group for AS. If you meant T1c that is a bit different but it would depend a lot on how many positive cores you had and what % of each core was cancerous.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 May 2020 at 13:09
PS if the AS is only planned to be short term (until the COVID situation improves) it shouldn't make any difference at all to your outcomes.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 May 2020 at 17:11

Hi Lyn


Thanks for the info, I have not been given my % yet what do you think would be an act now %


 

User
Posted 02 May 2020 at 17:33
That's too hard to nail. A 5% or 10% max in each core is a very tiny tumour, anything over 70% would be worrying. But more than the % is where is it situated ... 40% in the middle of the core is better than 20% near the edge.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 May 2020 at 00:23

Hi


See my profile. I've also just posted to Lee.


My lesions  were multifocal , to this day I've never asked exactly what was found where, or requested all my medical notes.


Back in 2015 I didn't know much at all.   It  did surprise and shock us when I was told  it was starting to trangress the capsule .   So how long is a piece of string ? As Lyn posts  it depends what is growing where and how fast ?  Everyone is unique  .  It could be years before any of us needed to take action.    To this day I don't know if I left it 6 months too late or  made decision too early.    From my outcomes , whether it was just luck , I seemed to have a surgeon who did a fantastic job.  


AS has specific criteria as you know .  Effectively I was doing that by monitoring PSA , I wasn't having DRE .  Maybe it was a 'gut feeling'   . I only had 1 biopsy,  which incidentally was overall more painful that the RARP.    If AS is right for you, stay on it for as long as you feel comfortable mentally.


Gordon

Edited by member 03 May 2020 at 00:37  | Reason: Not specified

User
Posted 03 May 2020 at 03:41
My friend, who is G3+4=7 - I don’t know any more about his tumour(s) - is doing very well on AS, and has been for five years. He has the very closest monitoring, with annual mp-MRI tests, urologist consultations and PSA tests quarterly. He also opts for any new-fangled tests that come out (he pays privately).

So with your Gleason score, AS is a possibility, and if available, you might like to go for that as long as you are advised you can get away with it. Although as Gordon mentioned, if you can cope with having cancer psychologically. Actually, that’s what we all do, because even after having prostate cancer treated or removed, there is no guarantee it won’t recur months or years later!

I would seek a second opinion from a urologist and/or an oncologist on the feasibility of an AS programme, and if you proceed, make sure you are subject to a strict and rigorous testing regime as outlined above.

Best of luck.

Cheers, John.
User
Posted 03 May 2020 at 11:56

Thanks both John and Gordon


What is becoming quite clear the more I read is depending on who you talk to specialist wise, this will result in what 'best advice' your given which will normally be their specialist subject only and the decision as to which direction you go in is down to yourself at the end of the day which is really scary!!!


I suppose the route to take is best judged on people with similar or the same starting point numbers and read as many start to current situation stories as possible, with this in mind John is the friend you mention active on this forum or contactable?


Thanks again in advance to anyone who takes the time to reply


Ian

User
Posted 03 May 2020 at 12:39

Hi Ian


A very valid point, gain as much information you are comfortable with.  Incidentally I didn't find or join this forum until 1 year after my op.   Ie May 16


I know very little about you, at 56 many other options , you can put in the mix .  Ie   working or not ? Manual work ?  Family.  Attitude to retirement.  Fitness etc etc. 


Anything you do to maintain wellbeing must have a positive impact .


Unfortunately there's men on here despite doing everything they can , are still incontinent, and have to explore more life limiting options.  


I've been very fortunate. All the best.  


Gordon


 


 

User
Posted 03 May 2020 at 13:52

My friend undergoing AS is on here very occasionally, and his nom-de-plume is KeithP.


Cheers, John.

Edited by member 03 May 2020 at 13:53  | Reason: Not specified

User
Posted 03 May 2020 at 15:02

Gordon's point is crucial - AS has to be done properly, not half-baked. Done correctly, you would have 3 monthly PSA test, annual DRE and annual MRI with additional MRI if the PSA rises. My father-in-law was supposed to be on AS but they refused to do any scans because his PSA was falling rather than rising; he died within 4 years of diagnosis with multiple mets to soft organs that had not been spotted until 24 hours before he died.


There are not so many active members on here following AS these days - we used to have a fair few. You would find more cases and stories like yours by joining YANA - an Australian site originally set up by a member of this forum but now worldwide.


https://www.yananow.org/ 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 May 2020 at 17:17

Having been over three Years on AS, I find it a little confusing that the NICE Guidelines actually reduce the level of monitoring as time goes on for patients like myself with an initial 3x3 Diagnosis.


I have only ever had one MRI in February 2017, and after my next checkup in June, I have been told they will then go to every six months Checkups at which I usually have a DRE as well, I have been told that I will not be offered another MRI or Biopsy unless my PSA or any other symptoms raise a red flag.


This is a concern to me, as I feel like I’m a little bit in limbo waiting for something to rear it’s ugly head before they will then investigate, when it could already not still be a localised cancer.


I have also only been examined by a specialist nurse for the last two years with the only question at every checkup of “is everything okay”, well I don’t know if everything is okay, what are people on AS with no clinical knowledge of Prostate Cancer supposed to look for??


NICE Guidelines: Year 2 and every year thereafter until active surveillance ends.






Every 6 months: measure PSAb


Throughout active surveillance: monitor PSA kineticsc


Every 12 months: DREd






a If there is concern about clinical or PSA changes at any time during active surveillance, reassess with multiparametric MRI and/or re‑biopsy.


b Could be carried out in primary care if there are agreed shared-care protocols and recall systems.


c Could include PSA density and velocity.


d Should be performed by a healthcare professional with expertise and confidence in performing DRE. In a large UK trial that informed this protocol, DREs were carried out by a urologist or a nurse specialist.






 

Shut down the voices of doom and spend your time living.
User
Posted 03 May 2020 at 19:54
Malcolm, it is not clear from your profile whether your MRI in 2017 was a normal one or mpMRI but since you only had a TRUS biopsy, I think you could reasonably argue that the 2019 guidelines should not be applied rigidly to you. If you were my dad or brother, I would be asking for an mpMRI to inform whether AS should continue and, if there are any changes to your PSA, a template or image mapped biopsy. The guidelines were changed in 2-19 on the assumption that any man possibly suitable for AS would have had mpMRI and template / mapped biopsy first.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 May 2020 at 21:59

Thanks Lyn, I can remember asking the person who did the scan and it was a 1.5 Tesla MRI which I presume is the normal one, there are two MRI machines at my hospital and both are 1.5 Tesla, I had a second TRUS biopsy in April 2018 which again was 3x3 Gleason grade, everything since then has been a PSA blood test and Dre at the appointment.


Would I have to request to see the Urology Consultant to argue the points you have highlighted?


 

Edited by member 03 May 2020 at 22:04  | Reason: Updated

Shut down the voices of doom and spend your time living.
User
Posted 04 May 2020 at 13:59
Malcolm, you should insist on an mpMRI scan, preferably at 3 Tesla resolution as soon as (be prepared to travel to find a 3T machine) and do not put up with anymore TRUS biopsies and go for a definitive template biopsy, hopefully, if not for once and all, at least to tide you over for a few years.

Our Matron, Lyn has told you of her personal tragedy if you or ‘they’ take their eyes off the ball whilst on AS.

Best of luck.

Cheers, John.
User
Posted 04 May 2020 at 17:23

Originally Posted by: Online Community Member
it was a 1.5 Tesla MRI which I presume is the normal one,


 


Tesla 1.5 is used for old style MRIs and mpMRI and meet the PROMIS standard promoted by PCUK and others. Very vew hospitals in the UK have Tesla 3 and I think there is only one place that has Tesla 7. 


So you may have had mpMRI and you may not - worth clarifying with your nurse specialist, I think, before you decide whether to challenge the urologist. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 04 May 2020 at 20:19

Okay, thanks John and Lynn for your input, I'll try to find out the points you have highlighted at my next check-up which should be at the beginning of June, needless to say this may not take place when it should due to the Coronavirus situation.


Strange appointment system as I have to be invited to request an appointment when the hospital write to me around a month before I'm due my next check-up, they should be getting in touch anytime now.


Many thanks for answering 👍

Shut down the voices of doom and spend your time living.
User
Posted 11 Jun 2020 at 18:47

Quick update to the points Lyn and Bollinge made.


The MRI done at my local Chesterfield Royal Hospital was not upto Promis standards, confirmed by Prostate Cancer tracking page https://drive.google.com/open?id=1a732RFPeoTWJTwF0mGhAAcb_GFz4RGCp&usp=sharing


I asked the specialist nurse who did my phone review two days ago, about getting another MRI due to the fact I hadn't had one since February 2017, she said she would ask the Consultant and get back to me. They got back to me today and said that I could have a scan at the Royal but it would not be upto Promis standard, and that if I wanted an mpMRI with contrast I would have to be referred to another hospital by my GP, where my care would then be moved to the new hospital. The nearest mpMRI is the Northern General Hospital in Sheffield about 30mins away. They are ringing me back Tuesday morning to see what I want to do.


I would have thought the Consultant would just refer me for the scan and then send the results back to my GP or Consultant at the Royal!!


I've contacted my GP about all this to see if this is the correct procedure, it seems a bit extreme to have to transfer to another hospital just to get a different type of scan. I'm waiting now for a call back from the GP.


Either way my dilemma is which scan do I take and is there is any significant benefit to having an mpMRI opposed to a standard MRI as my cancer initially was a very low grade 3x3, my latest PSA test on the 10th June 2020 was 4.98 down from 5.7 four months ago. I've spoken to prostate cancer UK nurses and they are inclined to maybe agree to a point with my current consultant, that my PSA is stable with no significant change since February 2017 at 4.6 with the 5.7 being the highest reading I've had.


So in short I can get a mpMRI but will need re-referring according to the hospital, yet to be confirmed.

Edited by member 11 Jun 2020 at 19:08  | Reason: Not specified

Shut down the voices of doom and spend your time living.
User
Posted 12 Jun 2020 at 00:45
I think with the most recent PSA result, I would be okay with a normal MRI - at least they have agreed to do the scan 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 05 Jul 2020 at 18:53

Got the results from the 1.5 Tesla MRI as follows:


All seems good, but could you translate as to what all these terms mean please?


"MRI Pelvis Prostate comparison made with MRI 5.2.2017; Prostate Volume 57mls. PSA Density 0.08 ng/mL.


BPH of the Transitional Zone (PI-RADS 2).  No significant PI-RADS lesion in the Transitional or Peripheral Zones.


Normal Seminal Vesicles.  No Pelvic lymphadenopathy.  No Focal Bone Lesion.


Comment: No Significant PI-RADS Lesion. No change from 2017"


Back for next check up in 4 months time.

Edited by member 05 Jul 2020 at 19:16  | Reason: Not specified

Shut down the voices of doom and spend your time living.
User
Posted 05 Jul 2020 at 21:22
It means that your prostate is quite large, your PSA density suggests that there is no cancer, and the mpMRI could see no sign of cancer in the prostate or the lymph nodes.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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