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Active surveillance or treatment??

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User
Posted 27 Oct 2018 at 07:14

I was diagnosed PC T2 N0 M0 gleason 7 (3+4)  17.10.17 psa 4.75 went on active surveillance as my preferred route

March 2018 Mri showed a small lesion near edge of prostate

second focussed biopsy 18 cores showed no signs of cancer June 2018

3rd template biopsy September 2018 22 cores showed 4 cores with less than 5% gleason  6 (3+3) psa 6.1

Surgeons, MDT and radiologists recommend  I should start treatment surgeon suggesting radical robotic surgery, radiologist: bracyotherapy

Me I am on the page of wanting to continue with active surveillance as I have no symptoms, I have recently separated and I am emotionally I am not prepared to have the treatment 

What advice cna you guys offer I dont want to miss the opportunity of cure but at the same time I have to be ready both financially and mentally,

I still have reasonable erections and had until separation regular sex which I continue with on my own and It is like a part of me I dont want to let go of

Onlymeagain

User
Posted 02 Dec 2018 at 13:02
My OH (55) was told he had cancer in 2016 Gleason Score 6 PSA 6.6 T2a, he went on AS and had his PSA tested every 3 months it slowly went up to 10.2 and in May 2017 he decided to have surgery, 6 weeks after the operation we got the results, it had just started to escape the capsule and he was upgrade to T3, PSA undetectable so far, he has never had a problem with incontinence but had problems with ED which we worked on from the start as it was important to us, today we have a full sex life with the help of a wee tablet. He has never regretted going for surgery and we look forward to the future. Everyone journey is different and personal to them, this was our course of action we choose given our research results and information.
User
Posted 28 Oct 2018 at 13:16
I checked with my mate and he was diagnosed three years ago with a PSA of 8 odd, which is now 11.3.

He is doing very well by ‘doing nothing’, but in reality he is doing a lot, including his annual consultation with one of Britain’s top urologists as mentioned above.

I fancied doing nothing, but was told in no uncertain terms that AS would not be appropriate for me at G4+3=7, PSA 16.7, which was just as well as my post-operative biopsy found limited spread.

G3+4=7 is on the limit of whether AS is appropriate, but then life’s a gamble.

Cheers, John.

User
Posted 27 Oct 2018 at 17:52
The point about active surveillance is that you can move on from it to further treatment at any time. PCa is generally slow-moving so no urgent need to do things on a weeks-to-months timescale.

It does sound like it's time to start thinking about your next moves though and I'd agree with the points about Mr Angry makes.

Amongst my personal reasons to get treatment rather than AS was the feeling that early treatment would improve my chances of a "low damage" outcome and also minimise the slight risk of spread/mets.

Done early enough to allow nerve-sparing surgery (though there is always an element of the unknown dependent on where the cancer is in the prostate) by a skilled, high volume surgeon, there is a very good chance of regaining most, if not all erectile function.

Nick

User
Posted 29 Oct 2018 at 10:41
Ohitsonlyme

My clinical dx was T2c. I went for surgery and they found it had just broken out of the prostate, so T3. This meant only nerve sparing one side. After nearly two years I can now only manage a partial erection with meds. If I had the op sooner they could have saved the nerves both sides and most likely my function would be better now.

All the best which ever way you go

Cheers

Bill

User
Posted 04 Nov 2018 at 13:42
I was diagnosed T2a initially.

After the RP surgery and study of my prostate in the lab, I was suddenly staged at T3a.

My point is that an accurate staging can probably only be achieved in this way and that an initial staging from biopsy and scan should be treated with caution.

Boy, am I glad now that I had surgery despite the side effects.

If I had gone down the AS route I could be dead or dying by now.

User
Posted 27 Oct 2018 at 11:16

Hi Oh it's, 

Has your Gleason score officially been downgraded from 3+4=7 to 3+3=6?

My friend is G3+4=7 and he has seen five top consultants, two advocated surgery, one radiotherapy and two AS. He is in his early seventies and has been on AS for some years. He has quarterly PSA tests and an annual MRI and appointment with his favoured consultant (i.e. the one that told him what he wanted to hear - keep calm and carry on), all paid for privately.

Obviously you should heed the serious advice of medical professionals as well as taking note of comments here from those who have ‘been there and done that‘. But if I were you, I would request second opinions from both a different urologist and a different oncologist, to which you are entitled on the NHS.

Hopefully one of them might say you are a candidate to continue on AS, in which case I would string it out as long as possible! But if so, make sure you have the same follow-up regimen as my mate, outlined above. Then if push comes to shove, in three months or three years or never, you can make the decision you are being asked to make now.

Best of luck for the future.

Cheers, John.

Edited by member 28 Oct 2018 at 02:56  | Reason: Not specified

User
Posted 28 Oct 2018 at 14:03

Hi I think with your latest results it may pay to look at AS it give you more time look at all the options and ask more questions.I had  PSA 2.9 and Gleason 3+4=7 with 5 out of 20 cores positive so needed to make a choice between Radical removal that the first surgeon i saw suggested that was the best option but I had a friend that had the brachytherapy that made my ask to see the Brachytherapy Surgeon and he though i was a good candidate for his options,but with out the extra knowledge gained elsewhere i could have taken the first option.I looked in to all the side affects of both treatments and felt the Brachytherapy was for me.Do i think i made the right choice only time will tell but i was very happy with the operation and the lack of real problems up to date 2years on.If you click on my avatar you can see my journey so far.

 

Regards John.

 

 

Edited by member 28 Oct 2018 at 14:04  | Reason: Not specified

User
Posted 28 Oct 2018 at 18:51
You mention finances, in my case I was not incapacited at all, and was able to do some ‘work’ from day one. I did some business from my hospital bed on my iPad!

If you have radical robotic minimally-invasive surgery, think three to four weeks recuperation, and nothing involving heavy lifting for a week or two after that.

I was signed off ‘sick’ for about eight weeks and I got Employment Support Allowance @ £76 a week after a load of bureaucracy and a two-week wait.

Cheers, John.

User
Posted 04 Nov 2018 at 22:25
I get where you are coming from, itsmeagain. With a very low % involvement and low Gleason, continuing on AS would seem to be a no brainer. It seems that the MDT has caused some confusion by throwing in this idea that because the low volume tumour is close to the edge, it might be through the edge. They might be being risk averse - and you can hardly blame them since many patients would feel aggrieved if they advised the other way round and turned out to be wrong - so you could ask instead what the impact might be of not taking their advice now. For example, if you reject the view of the MDT now, will that impact on your access to detailed scans and biopsies in the future? If you remain on AS for 3 months until your life and finances are a bit more settled, would they be agreeable to another mpMRI at next review?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Nov 2018 at 00:12
Bit of a paradox here. There seems to be a growing acceptance among clinicians that Gleason 3 should not be regarded as cancer but in this case both the surgeon and the urologist recommend their respective radical treatment. I agree it would make sense to question them further as to why they make their recommendation. It is down to the OP whether he nevertheless decides instead to be on AS. I think his decision has to be respected and he should be closely monitored and treated if his situation becomes more critical. Perhaps it would be helpful for the scans and histology to be refereed to a second opinion who would not be involved in any treatment.
Barry
User
Posted 30 Nov 2018 at 09:07

Hi there

For Francij1 

i am very interesred in this genetically mapped from discovery to death G6 case.

Can you provide the background?

My husband opted to keep his prostate as having it removed is as we all know a very big deal and should not be done lightly by anyone with a low risk diagnosis.

The mental impact on men of losing erectile function losing the ability to ejaculate and indeed losing penile length is enormous.

The mental impact on men of having their urether cut and is major too. I have heard it described as feeling like they have just played ‘Russian roulette’ - will they be one of the ones who dodge the bullet and get continence back straight away or will they be one of those who never gets continence back.

our recommending RP surgeon stated that stress incontinence is likely to be the new norm ( and that this is considered a good outcome).

The mental impact on men of a change to their work pattern alone can be high too. A radical treatment is more likely to impact here too. 

So a decision to remove a prostate because of a G6 tumour is indeed a radical ( and personal) decision.

if you could share the G6 to death background that would be great as l  not come across this in my research.

Thanks

Clare

 

 

User
Posted 02 Dec 2018 at 12:50
Hi Mervyn,

Good news that your cancer is contained.

Bear in mind that the MSK Nomograms are prognostications (think Mystic Meg) based on up to fifteen-year old data. Medical science, particularly in the field of PCa, has advanced dramatically over that period.

Might I politely suggest that when you make your next post, you start a thread under your own account - not the easiest thing with this bulletin board - so that we can track your progress in future.

Best of luck at your consultation in January.

Cheers, John.

User
Posted 02 Dec 2018 at 17:48
I didn’t have a biopsy for over a year as my PSA was going up and down so was told cancer was unlikely. In the end it spiked, I had the biopsy and it was G9. I had the op two months ago but as it was T3b there was no nerve sparing. It’s a big life change but my first post op psa was ‘undetectable’ and being cancer free was the goal. You need to take the professional advice, if they think AS is safe it seems like the best route but I do wonder in my case if perhaps I waited too long and subsequently lost the possibility of nerve sparing. That said I did have a year of relative normality that I wouldn’t have had if I’d had the op earlier.

I know some men avoid treatment altogether to maintain full sexual function and avoid the potential incontinence issues but although prostate cancer is not the killer it was it’s still not to be trifled with. Treatment is advancing all the time and many men now come through with minimal lifestyle changes.

User
Posted 02 Oct 2019 at 23:45
Brilliant - I am pleased that things are settling down
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Sep 2020 at 14:03

My OH was on AS his PSA was slightly higher than yours (10.2) his consultant told him it was time to take action, he refused another biopsy as he had a infection after the first one, he was offered a high resolution MRS scan, which we could clearly see that the tumour was right on the edge of the prostrate. He decided to go for surgery in May 2017 it was found that it had just started to break through. His PSA started to rise in Dec 2019 and has been at 0.1 i his last two tests, waiting results of his recent PSA, as long as it below 0.2 he will carry on with 3 monthly tests.

Edited by member 25 Sep 2020 at 11:58  | Reason: Not specified

User
Posted 24 Sep 2020 at 14:28
Happy for you that things have worked well so far. Scans have certainly improved considerably over recent years but cannot be relied on 100%. Your consultant has suggested a further transperineal biopsy but it might help you to know how much importance he attaches to doing this soon rather than leaving it for perhaps for 6 months. As often happens, the decision seems to be left with you to make. In your situation I am sure members here would come to different decisions.
Barry
User
Posted 24 Sep 2020 at 19:51
Strange. Your biopsy results were not that far different to mine, and with Tamulosin I had no problems with my waterworks, except needing to go a bit more frequently, but AS wasn't even discussed - 3+4 was seen as requiring treatment. TBH I wouldn't have considered it even it was, especially given the number of times the histology results are worse than the biospy suggested.

Age is also a factor in successful outcomes, and while general fitness helps, more key, at least for surgery, seem to be things like weight and whether you smoke.

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User
Posted 27 Oct 2018 at 11:16

Hi Oh it's, 

Has your Gleason score officially been downgraded from 3+4=7 to 3+3=6?

My friend is G3+4=7 and he has seen five top consultants, two advocated surgery, one radiotherapy and two AS. He is in his early seventies and has been on AS for some years. He has quarterly PSA tests and an annual MRI and appointment with his favoured consultant (i.e. the one that told him what he wanted to hear - keep calm and carry on), all paid for privately.

Obviously you should heed the serious advice of medical professionals as well as taking note of comments here from those who have ‘been there and done that‘. But if I were you, I would request second opinions from both a different urologist and a different oncologist, to which you are entitled on the NHS.

Hopefully one of them might say you are a candidate to continue on AS, in which case I would string it out as long as possible! But if so, make sure you have the same follow-up regimen as my mate, outlined above. Then if push comes to shove, in three months or three years or never, you can make the decision you are being asked to make now.

Best of luck for the future.

Cheers, John.

Edited by member 28 Oct 2018 at 02:56  | Reason: Not specified

User
Posted 27 Oct 2018 at 17:52
The point about active surveillance is that you can move on from it to further treatment at any time. PCa is generally slow-moving so no urgent need to do things on a weeks-to-months timescale.

It does sound like it's time to start thinking about your next moves though and I'd agree with the points about Mr Angry makes.

Amongst my personal reasons to get treatment rather than AS was the feeling that early treatment would improve my chances of a "low damage" outcome and also minimise the slight risk of spread/mets.

Done early enough to allow nerve-sparing surgery (though there is always an element of the unknown dependent on where the cancer is in the prostate) by a skilled, high volume surgeon, there is a very good chance of regaining most, if not all erectile function.

Nick

User
Posted 28 Oct 2018 at 13:16
I checked with my mate and he was diagnosed three years ago with a PSA of 8 odd, which is now 11.3.

He is doing very well by ‘doing nothing’, but in reality he is doing a lot, including his annual consultation with one of Britain’s top urologists as mentioned above.

I fancied doing nothing, but was told in no uncertain terms that AS would not be appropriate for me at G4+3=7, PSA 16.7, which was just as well as my post-operative biopsy found limited spread.

G3+4=7 is on the limit of whether AS is appropriate, but then life’s a gamble.

Cheers, John.

User
Posted 28 Oct 2018 at 14:03

Hi I think with your latest results it may pay to look at AS it give you more time look at all the options and ask more questions.I had  PSA 2.9 and Gleason 3+4=7 with 5 out of 20 cores positive so needed to make a choice between Radical removal that the first surgeon i saw suggested that was the best option but I had a friend that had the brachytherapy that made my ask to see the Brachytherapy Surgeon and he though i was a good candidate for his options,but with out the extra knowledge gained elsewhere i could have taken the first option.I looked in to all the side affects of both treatments and felt the Brachytherapy was for me.Do i think i made the right choice only time will tell but i was very happy with the operation and the lack of real problems up to date 2years on.If you click on my avatar you can see my journey so far.

 

Regards John.

 

 

Edited by member 28 Oct 2018 at 14:04  | Reason: Not specified

User
Posted 28 Oct 2018 at 17:48

Thank you all for the feed back my marriage break up was horrendous,I am now settled into my peaceful new home

 

 AS seems to be best for me until I can gather my financial and emotional resources. I am going to have to go through the recuperation alone or pretty well alone I suppose I am looking for reassurance that with my figures I am not making a big mistake

User
Posted 28 Oct 2018 at 18:51
You mention finances, in my case I was not incapacited at all, and was able to do some ‘work’ from day one. I did some business from my hospital bed on my iPad!

If you have radical robotic minimally-invasive surgery, think three to four weeks recuperation, and nothing involving heavy lifting for a week or two after that.

I was signed off ‘sick’ for about eight weeks and I got Employment Support Allowance @ £76 a week after a load of bureaucracy and a two-week wait.

Cheers, John.

User
Posted 29 Oct 2018 at 10:07
I am of the view that the treatment is often worse than the condition and and life with PCa isnt always a big bad scary thing.

I am not phased by having it

We all die one day and yes I would prefer to die peacefully in my sleep or making love to the chimes of the church bells but not realising the fire engine was going past

I dont want to be over treated and I want to live a life with sex still in it until I eventually make that choice.

Yes I am young fit and active.

I dont smoke or drink to excess,not over weight and am often told I could pass for being 15 years younger than I am, both mentally and physically

If I knew what was going to kill me then maybe I would have a different approach

I want to see my Grandchildren grow up

My only child is 8 years old so I need to be around for another 30 or so years

my biopsies showed:

biopsy 1 out of 12 less than 10% in 2 cores gleason 3+4

MRI shows small lesion close to edge of the prostate

Biopsy2 post MRI focussing on lessions 18 cores all negative

Biopsy 3 Trans-pirineal MRI guided 22 cores 4 with 5% or less gleason 3+3

MDT Call the near to the edge as a possible T3 but to me near means still contained so t2 with pedominantly very low volume gleason 3

22 cores =2200 (as a percentage) 4 cores with less than 5% = 20 In my ratonal way of looking at it that means less than 1% of volume in a MRI targetted biopsy is gleason 3

I have asked for the first biopsy to be looked at again and checked for its grading

Only downer is that my PSA has risen from 4 to 6.1 in 31/2 years

Am I being a fool and playing with my life for "a leg over" no offence intended to any lady readers

What studies are available surrounding active surveillance???

User
Posted 29 Oct 2018 at 10:24
Hi

Hope you find a way through the mental side of things. Often the most difficult aspect and certainly so in your case with the choices you have before you.

The only note of caution may be to not try to second guess the experts. If they say your disease is likely T3 it's because their experience so directs their thinking.

You're entirely free to make the choice you're perhaps inching towards, but don't do it hoping and expecting the experts to be wrong or over cautious. T3 is cause for concern.

User
Posted 29 Oct 2018 at 10:41
Ohitsonlyme

My clinical dx was T2c. I went for surgery and they found it had just broken out of the prostate, so T3. This meant only nerve sparing one side. After nearly two years I can now only manage a partial erection with meds. If I had the op sooner they could have saved the nerves both sides and most likely my function would be better now.

All the best which ever way you go

Cheers

Bill

User
Posted 29 Oct 2018 at 16:52

I also looked on this site ‘yananow’ and although interesting I didn’t find the information particularly helpful. I agree with mr Angry that so far I’ve heard of no-one that gets away with zero issues on HT.

i consider myself lucky that I ‘only’ got the depression, anxiety, insomnia and the dreaded ED. I continued to work throughout all my treatment and many do. click my name to see my treatment details .

You need to understand the true implications of each treatment to make an informed decision. 

i understand the state that the OP must be in after also separating from his partner during this and having a young child as well. 

One thing you probably need to do ‘ohitsonlyme’ is start talking to either your specialist nurse or Macmillan nurse. I don’t know about the help through PC UK so can’t comment.

you may also want get in touch with your counselling team through your S/nurse. It really is helping me . We can all talk brave , I know i did but in the end I needed all the support I could get.

good luck and keep posting , sometimes it’s not exactly what you want to hear but everyone will try to do their best to help you. No one on here will tell you what to do though, we all have to do that ourselves.

phil

User
Posted 04 Nov 2018 at 08:20

Check on my profile, my husband choose AS and went for surgery in the end. I have detailed his journey Any questions he will be happy to answer

User
Posted 04 Nov 2018 at 13:42
I was diagnosed T2a initially.

After the RP surgery and study of my prostate in the lab, I was suddenly staged at T3a.

My point is that an accurate staging can probably only be achieved in this way and that an initial staging from biopsy and scan should be treated with caution.

Boy, am I glad now that I had surgery despite the side effects.

If I had gone down the AS route I could be dead or dying by now.

User
Posted 04 Nov 2018 at 17:06

Originally Posted by: Online Community Member
I was diagnosed T2a initially.

After the RP surgery and study of my prostate in the lab, I was suddenly staged at T3a.

My point is that an accurate staging can probably only be achieved in this way and that an initial staging from biopsy and scan should be treated with caution.

Boy, am I glad now that I had surgery despite the side effects.

If I had gone down the AS route I could be dead or dying by now.

 

Apparantly many post surgery pathology reports upgrade the Gleason score because (particularly the TRUS) biopsies are a bit like playing darts.

User
Posted 04 Nov 2018 at 18:58
Yeah, a 12 dart game with your prostate as the dartboard and your back passage as the trajectory route. 😩😂
User
Posted 04 Nov 2018 at 22:11
Not being sure of the staging or Gleason score makes it more difficult to decide whether to go on AS or have treatment. I had my biopsy first and it was assessed as T2A but following the MRI scan was upgraded to T3A. Examination of removed Prostates sometimes show the cancer has spread further than thought and or the Gleason score is not as originally graded. Where there is a difference between Gleason from biopsy and in the lab it is much more likely to be up rather than down graded.

I think it would be unusual for somebody graded a T3 at diagnosis to opt for AS

Barry
User
Posted 04 Nov 2018 at 22:25
I get where you are coming from, itsmeagain. With a very low % involvement and low Gleason, continuing on AS would seem to be a no brainer. It seems that the MDT has caused some confusion by throwing in this idea that because the low volume tumour is close to the edge, it might be through the edge. They might be being risk averse - and you can hardly blame them since many patients would feel aggrieved if they advised the other way round and turned out to be wrong - so you could ask instead what the impact might be of not taking their advice now. For example, if you reject the view of the MDT now, will that impact on your access to detailed scans and biopsies in the future? If you remain on AS for 3 months until your life and finances are a bit more settled, would they be agreeable to another mpMRI at next review?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Nov 2018 at 00:12
Bit of a paradox here. There seems to be a growing acceptance among clinicians that Gleason 3 should not be regarded as cancer but in this case both the surgeon and the urologist recommend their respective radical treatment. I agree it would make sense to question them further as to why they make their recommendation. It is down to the OP whether he nevertheless decides instead to be on AS. I think his decision has to be respected and he should be closely monitored and treated if his situation becomes more critical. Perhaps it would be helpful for the scans and histology to be refereed to a second opinion who would not be involved in any treatment.
Barry
User
Posted 30 Nov 2018 at 05:48

Originally Posted by: Online Community Member
I get where you are coming from, itsmeagain. With a very low % involvement and low Gleason, continuing on AS would seem to be a no brainer. It seems that the MDT has caused some confusion by throwing in this idea that because the low volume tumour is close to the edge, it might be through the edge. They might be being risk averse - and you can hardly blame them since many patients would feel aggrieved if they advised the other way round and turned out to be wrong - so you could ask instead what the impact might be of not taking their advice now. For example, if you reject the view of the MDT now, will that impact on your access to detailed scans and biopsies in the future? If you remain on AS for 3 months until your life and finances are a bit more settled, would they be agreeable to another mpMRI at next review?

I now have another blood test set for December and my 3 month review for mid January,Lyn you have me down to a T I too think they are being risk avers and perhaps in many cases rightly so.

I have no issues with the mental effects of having PC(nor Physical)in fact quite the opposite

 

99% of the folks I speak to about it,most seem to say that they would have it out regardless of the side effects,The advise from old Barry about asking for a second opinion from a non involved surgeon/urologist is sensible

 

In my case also having another MPri is also a fovoured route to further biopsies as I am sure they biopsies must have a chance of hitting nerves going in and causing problems that werent around prior as  some erectile dysfunction occurred post biopsy and has pretty much returned now

The main Issue I have with the suggested treatment route is that is based on a quote "possible T3" in my view until they say it is a T3 then it is a T2 with very low volume gleason (less than 0.1%)from a focussed biopsy with 22 needles and carried out under general trans perineum  

I dont want to be over treated

Lyn I just picked up on your point about asking if I will be ok for further tests if I reject the MDT advice and so will ask this a the next appontment

Thank you All for your support

Bernie (onlymeagain)

User
Posted 30 Nov 2018 at 07:25
Old Barrie it's a proven G7 not a G6. Also, the only genetically mapped PC case from discovery to death proved that the PC that caused death mutated from a G3 NOT from the G4's that were also present at diagnosis.

If you have a small G3 that is not near the edge yes AS is a no brainer. In my own case I had a G3 near the edge I was advised that because it was near the edge, family history and I was young I was better to have it out. Final pathology was a G6 T3A apparently they are rare??

Ohiits, Your delema is real and I can empathize with the sexual function issue and being separated BUT for me it worked out OK in the end and I have given PC a kicking (fingers crossed PC stays down and dick stays up!).

I do wonder about the cost of AS and if this is pushing the cash strapped NHS towards prostatectomy to save cash??

User
Posted 30 Nov 2018 at 09:07

Hi there

For Francij1 

i am very interesred in this genetically mapped from discovery to death G6 case.

Can you provide the background?

My husband opted to keep his prostate as having it removed is as we all know a very big deal and should not be done lightly by anyone with a low risk diagnosis.

The mental impact on men of losing erectile function losing the ability to ejaculate and indeed losing penile length is enormous.

The mental impact on men of having their urether cut and is major too. I have heard it described as feeling like they have just played ‘Russian roulette’ - will they be one of the ones who dodge the bullet and get continence back straight away or will they be one of those who never gets continence back.

our recommending RP surgeon stated that stress incontinence is likely to be the new norm ( and that this is considered a good outcome).

The mental impact on men of a change to their work pattern alone can be high too. A radical treatment is more likely to impact here too. 

So a decision to remove a prostate because of a G6 tumour is indeed a radical ( and personal) decision.

if you could share the G6 to death background that would be great as l  not come across this in my research.

Thanks

Clare

 

 

User
Posted 02 Dec 2018 at 12:21

Originally Posted by: Online Community Member

 

My husband opted to keep his prostate as having it removed is as we all know a very big deal and should not be done lightly by anyone with a low risk diagnosis.

The mental impact on men of losing erectile function losing the ability to ejaculate and indeed losing penile length is enormous.

The mental impact on men of having their urether cut and is major too. I have heard it described as feeling like they have just played ‘Russian roulette’ - will they be one of the ones who dodge the bullet and get continence back straight away or will they be one of those who never gets continence back.

our recommending RP surgeon stated that stress incontinence is likely to be the new norm ( and that this is considered a good outcome).

The mental impact on men of a change to their work pattern alone can be high too. A radical treatment is more likely to impact here too. 

So a decision to remove a prostate because of a G6 tumour is indeed a radical ( and personal) decision.

if you could share the G6 to death background that would be great as l  not come across this in my research.

Thanks

Clare

 

 

Clare I think you have got my personal situation down to a TEE in your analysis of your husbands case

 

I am very much against the over treatments and realise that this too may be a gamble with the length of my life but quality in the near term is very important to me and many others I have no issues with my health and it doesnt affect me mentally having cancer

We all die one day!!

I am prepared to talk things through with an independent member of another prostate team to gain a better understanding of the progression and options available

I too am reading about "Is grade 6 Gleason cancer", many articles support Active surveillance which I am more than mentally capable of handling even if the decision goes against me in the future 

Bernie

onlymeagain

 

 

User
Posted 02 Dec 2018 at 12:28

I too am a newbie to the Prostate Cancer NHS Case load

Just to let you know that I was diagnosed in October 2018 PSA 99 then 67 T2 Biopsie not good at all but the good news is The Active Cancer hasn't spread.

What a relief after two months of "What next?" Wait and See "More tests then a scan' wait and see

Decision Active Watching - seeing a consultant in January after another PSA.

I am now planning my life forward again - hooray.

As a matter of interest I did the Sloan Kettering thing and according to the statistic analysis - PROBABILITY

The good news is that I have a TWO percent chance of dying from untreated prostate cancer in ten years

The bad new is that I have an 88 percent chance of dying of some thing else

The really good news is that means I have ten percent chance of living ten years - possibly much more than I expect

regards

Mervyn

If you find any more sad links to Kierkegard words of wisdom - for crying out loud, be a bit more optimistic and original

Proverb - Statistics are brilliant - especially if you know the answer you want before you start

User
Posted 02 Dec 2018 at 12:50
Hi Mervyn,

Good news that your cancer is contained.

Bear in mind that the MSK Nomograms are prognostications (think Mystic Meg) based on up to fifteen-year old data. Medical science, particularly in the field of PCa, has advanced dramatically over that period.

Might I politely suggest that when you make your next post, you start a thread under your own account - not the easiest thing with this bulletin board - so that we can track your progress in future.

Best of luck at your consultation in January.

Cheers, John.

User
Posted 02 Dec 2018 at 13:02
My OH (55) was told he had cancer in 2016 Gleason Score 6 PSA 6.6 T2a, he went on AS and had his PSA tested every 3 months it slowly went up to 10.2 and in May 2017 he decided to have surgery, 6 weeks after the operation we got the results, it had just started to escape the capsule and he was upgrade to T3, PSA undetectable so far, he has never had a problem with incontinence but had problems with ED which we worked on from the start as it was important to us, today we have a full sex life with the help of a wee tablet. He has never regretted going for surgery and we look forward to the future. Everyone journey is different and personal to them, this was our course of action we choose given our research results and information.
User
Posted 02 Dec 2018 at 16:28

Linda, your post has given me a lift. I have been feeling very lo, worrying about my husband. He is having his op next Monday, he has been staged as T3, G 6.

He’s absolutely dreading any incontinence and ED. It’s reassuring to read your post.

Thank you

User
Posted 02 Dec 2018 at 17:48
I didn’t have a biopsy for over a year as my PSA was going up and down so was told cancer was unlikely. In the end it spiked, I had the biopsy and it was G9. I had the op two months ago but as it was T3b there was no nerve sparing. It’s a big life change but my first post op psa was ‘undetectable’ and being cancer free was the goal. You need to take the professional advice, if they think AS is safe it seems like the best route but I do wonder in my case if perhaps I waited too long and subsequently lost the possibility of nerve sparing. That said I did have a year of relative normality that I wouldn’t have had if I’d had the op earlier.

I know some men avoid treatment altogether to maintain full sexual function and avoid the potential incontinence issues but although prostate cancer is not the killer it was it’s still not to be trifled with. Treatment is advancing all the time and many men now come through with minimal lifestyle changes.

User
Posted 02 Dec 2018 at 18:22
Sexual function vs cancer?

f*** it!

Cheers, John.

User
Posted 16 Jan 2019 at 06:04

Originally Posted by: Online Community Member
I get where you are coming from, itsmeagain. With a very low % involvement and low Gleason, continuing on AS would seem to be a no brainer. It seems that the MDT has caused some confusion by throwing in this idea that because the low volume tumour is close to the edge, it might be through the edge. They might be being risk averse - and you can hardly blame them since many patients would feel aggrieved if they advised the other way round and turned out to be wrong - so you could ask instead what the impact might be of not taking their advice now. For example, if you reject the view of the MDT now, will that impact on your access to detailed scans and biopsies in the future? If you remain on AS for 3 months until your life and finances are a bit more settled, would they be agreeable to another mpMRI at next review?

 

Well My previous PSA in October  post the the transpirineal biopsy was elevated to 6.1 As this was only 3 weeks after the biopsy I queried the result as I felt that the blood test had been carried out too soon after.

I have since had new bloods taken and my PSA is back down to a slightly elevated norm for me of 4.8.

My relationship with the young surgeon is not as good as I would like as I feel that I am having to continually run through my results with him and his view is that AS with my results is not normal, I have now agreed to remain on AS for the next 3/4 months and my next bloods will be taken in May with a follow up appointment with a different consultant.

I have asked for my scan to reviewed at a different facility and this seems to have been agreed but I am not 100% confident of this as the doctor hasnt had the first biopsies with G 7 reviewed despite my request

I have been told that i can have another MRI and that holding back on treatment will not prevent this.

The diagnosis of my MRI being near the edge is graded as T3 is not  as it should be T2 so I wnat to have another opinion and if necessary a further scan if the original scan results are unclear 

My specialist Nurse is excellent and so I am liasing through her as she understands me better and is asking for  a different surgeon to take over my case

User
Posted 07 May 2019 at 15:47
I got the scan results today and a meeting with a different consultant at The Christie in Manchester a real nice guy, with great qualifications

No discernible change in my scan compared to 12 months ago and with my set of results he is comfortable keeping me on Active surveillance with annual scans and blood tests every 4 months

His view was similar to mine in as much that there is no break through into the capsule so it is a T2 not T3

I know I got what I was wanting to hear and only looking backwards in the future will show if it is the right decision

My PSA is still below 6 and he said he wouldn't be too concerned unless it got upto 15 or more

He asoo said he didnt want to continue with lots of Biopsies as he "didnt want to remove my prostate 1 needle at a time

So carry on regardless

Onlymeagain

User
Posted 02 Oct 2019 at 23:42
another 6 months gone Prostate still intact

PSA steady at 6.1 new consultant at the Christie quite happy to continue with AS and I go back for another review early in the newyear

My personal lfe is settling down and by not having the treatment I have had much less to contend with so at this time life is good

Onlymeagain

User
Posted 02 Oct 2019 at 23:45
Brilliant - I am pleased that things are settling down
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Sep 2020 at 08:25

Well!!!!!
Life has changed dramatically- for the better !!
A court case I was battling with has been withdrawn in my favour, my wife and I are reconciled and she is back to her previous loving self
I am particularly busy with work despite Covid restrctions -----Mentally I am much better and so backto PC

 

I am now 65 and very fit and healthy

I was fully diagnosed 3 years ago after simple biopsy gleason 3+4 but only10%involved and 2 out of 6 cores I elected AS
I have had clear bone scans,my first MRi showed small volume close to edge of prostate but not out and a trans perrineal bipsy targetted on suspect areas showed only 3+3,My PSa has been bouncing from 4.7 to 6.9 up and down every time My latest PSa is 7.4 I am still not too concerned but my consultant has suggetsed another trans perineal biopsy I didnt enjoy my last one and felt it affected my erections adversly although reasonable
My 2nd MRI has shown no discernable change from 2 years ago
I am unsure whether to have this biopsy and comments will be appreciated
Bernie
Only meagain

Edited by member 24 Sep 2020 at 08:26  | Reason: Not specified

User
Posted 24 Sep 2020 at 14:03

My OH was on AS his PSA was slightly higher than yours (10.2) his consultant told him it was time to take action, he refused another biopsy as he had a infection after the first one, he was offered a high resolution MRS scan, which we could clearly see that the tumour was right on the edge of the prostrate. He decided to go for surgery in May 2017 it was found that it had just started to break through. His PSA started to rise in Dec 2019 and has been at 0.1 i his last two tests, waiting results of his recent PSA, as long as it below 0.2 he will carry on with 3 monthly tests.

Edited by member 25 Sep 2020 at 11:58  | Reason: Not specified

User
Posted 24 Sep 2020 at 14:28
Happy for you that things have worked well so far. Scans have certainly improved considerably over recent years but cannot be relied on 100%. Your consultant has suggested a further transperineal biopsy but it might help you to know how much importance he attaches to doing this soon rather than leaving it for perhaps for 6 months. As often happens, the decision seems to be left with you to make. In your situation I am sure members here would come to different decisions.
Barry
User
Posted 24 Sep 2020 at 18:12

Mine was a telephone consultatation and unlike beng in front of the doctor it tends to be a quick couple of minutes without time to refelct and ask further questions on the decision.

 

Initially I said that I was happy to continue on AS without further biopsies but because of lack of time to consider I said yes to having the biopsy and in hind sight I am having second thoughts about it I have no major problems with my water works maybe a little urgency but I put this down to poor control as I tend to get an ifffy tummy in the morning after my third coffee and struggle to hold things.

I am a non smoking healthy builder  so active a the lads that work for me often cant keep up with me so I want to delay any major treatment as long as I can,

I talk to myself that many men die with prostate cancer and not of  prostate cancer but in saying that I am realistic and not burying my head in the sand

Bernie Onlymeagain

User
Posted 24 Sep 2020 at 19:51
Strange. Your biopsy results were not that far different to mine, and with Tamulosin I had no problems with my waterworks, except needing to go a bit more frequently, but AS wasn't even discussed - 3+4 was seen as requiring treatment. TBH I wouldn't have considered it even it was, especially given the number of times the histology results are worse than the biospy suggested.

Age is also a factor in successful outcomes, and while general fitness helps, more key, at least for surgery, seem to be things like weight and whether you smoke.

 
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