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User
Posted 04 Dec 2023 at 17:15

Last night my anxiety level was off the charts.  I was pacing up and down, up and down - and had convinced myself by the end of it - pushing myself in certain ballet exercises - that my cancer had spread and that NOW I had bone cancer.  At an earlier point I had been dwelling on the prospect of small cell carcinoma - given my history of relatively low PSA levels - but had rejected that due to the relative rarity of it.  (Even in my extreme state of stress I had a small sliver of reason that appeared to work.)  

Seemingly - and I say seemingly because I have yet to have a PET scan - I seem NOT to have either - or at least the pointers would have been in a different direction I think.  (Perhaps I'm fooling myself thinking that.)  

I DO, however, HAVE cancer.  That said it IS blessedly localised - albeit 'moderately aggressive'.  6 out of the 24 general cores taken and 4 out of the 4 'area of concern' specific ones it seems had the relevant nastiness and I have ended up with a Gleason 7 (4 + 3) and am at the proverbial T2A stage.  (The TP consultant clearly did a FINE job.)  While I realise that is not optimum, it is at least not the Gleason 8 or 9 or Stage 3 that I was EARNESTLY expecting / fearing.  Thus the announcement of the cancer - given that it was 'curative' - came as - and certainly was greeted with - a certain relief.   

The reporting Registrar - a very nice chap - said that 'it should not affect your life expectancy at all'.  (Let's pray.)   I realise it is Ironic that I should see this as a relief.  Still, at least NOW I know.  

The choice for treatments presented - and at least I have two - is between either (i) surgery or (ii) Radio / Hormone therapy.  In my head now I'm thinking surgery.  He said there would be 'good margins'.  

At least 'the prostatic capsule is in tact' - as the MRI noted - 'The seminal vesicles are normal.  No enlarged pelvic nodes and no destructive bone lesion'.   The Registrar said that the 8 mm lesion seen on the MRI - in his opinion - might well be 'prostatitis'  given that it is 'wedge shaped'.  Still, there is cancer there clearly - but only on the left side.  He said the right was almost entirely normal.  That means surgery would be nerve sparing on the one side.  This, of course, would effect the ED.  That for me is less a concern than the continence issues.  It seems that has less a reference to the nerves but rather to the active preservation of the pelvic floor.  Is that correct??? 

Again my PSAs have been - just for historical record - 

2013 - 1.5

2022 - 2.2

Nov. 23 week 1 - 2.75

Nov. 23 week 3 - 2.72

Two questions - 

(i) Vis a vis the Pet Scan - how often to they come up with something?  Is it relatively rare?  Is there anything in my details which would suggest a complication.  You chaps know much better than I will ever do.  You are the best.  

(ii) Any suggestions / advice in terms of the choice.  As I say in my head now I'm leaning toward surgery but could always be persuaded otherwise.  The CNS who I met - (she is it seems a member of a team of six) - said I should be 90% fixed by the time I have my treatment meeting with the surgeon and oncologist.  

That's it for now.  One thing I had wondered in reviewing so many of the correspondences on this WONDERFUL forum resource is that - with supposedly 70% of chaps who choose surgery enjoying a SUCCESSFUL primary 'curative' treatment - why it seems so many here are reporting a chemical recurrence?  This is, of course, just my own outside observation.  Somehow the conversation ratio seemed to rank at higher than 30% ... at least to my eyes - but I now figure that may well be because those who have already actively witnessed their success have for the most part simply 'moved on'.  I suppose that would - in and of itself - be a mark of victory.  Would I be accurate in thinking that????  Grateful to for your kind advice on that score.

Indeed, bless you for ALL.  Truly.  

Just seen my reporting letter so will give the specific details - not entirely sure ALL are clear to me - but here goes - 

Histology Report:

Acinar adenocarcinoma

Positive cores: 6/18 sector cores plus 4/4 target cores  

Positive sites: 3/6 sectors plus target (all left-sided)

Highest Gleason score: 4+3=7

ISUP grade group: 3

Maximum cancer length: 10mm

Site of maximum cancer length: Left midzone

Perineural invasion seen.

Segments from the letter - 

I unfortunately had to tell him that the biopsy report does indeed show some cancer within the prostate. .... 

 

The good news is that the cancer is organ confined and unilateral. His MRI is scored equivocally and it may be that this is MRI invisible disease.

 

Regardless, both radical prostatectomy and external beam radiation are good options for him oncologically speaking. The former is probably preferred given his work which involves a lot of travel.



Edited by member 04 Dec 2023 at 18:06  | Reason: Not specified

User
Posted 04 Dec 2023 at 18:38

Hi! Hope you are feeling a little more settled in yourself. Getting a clear diagnosis , and starting to make plans , is a key starting point. There's a lot in your post, and I'm not qualified to address all of the points you raise, but a couple of thoughts:

 - you say that you are open to persuasion on your treatment option, but you will find ( I hope!) that no one here will try to persuade you in either direction. The only thing that matters is that you reach your own conclusion on the best info you can get at the time, and are at peace with your choice. In clinical terms there seems to be little to choose between RP and RT , but there can be quite a large difference in the emotional impact of each route. Your first para indicates that the emotional components of this are very powerful for you, so you need to give that due weight in your decision making. You will see plenty of people on here who took comfort from the ' get it out at all costs'  strategy, and as many for whom the ED/ Incontinence issues carried more weight. It is very much a personal thing.

- be wary of drawing too many inferences from anecdotal reports of recurrence after RP. This is a wonderful site, but it makes no pretence that posts are statistically valid. There is inevitably quite a bit of bias in play- people whose treatment goes entirely as expected tend not to post, so the messaging is skewed.    

Good luck: the trajectory of your post- that things are not as bad as you feared- seems right. 

 

User
Posted 04 Dec 2023 at 19:43

The posts on this site are massively skewed towards problem cases.

Nearly all threads start with a post "Oh no, I have such and such a symptom I think it's cancer. I'm having tests tomorrow. I'll let you know how I get on" and we hear no more.

If we do get another post it is, "tests were positive. I've made a decision to have surgery, can anyone give me a rational reason why I should have surgery?" and we hear no more.

If we do get another post it is, "I'm booked for surgery tomorrow. I'll let you know how I get on" and we hear no more.

If we do get another post it is, "I have xyz problem, any suggestions" or five years later "I have recurrence".

So all those threads which just stop are almost certainly good news stories (or very sudden death). Consequently most posts on here are people discussing ongoing problems, but the reality is most people go through this disease and treatment with minimal problems and have no need to post here.

Dave

User
Posted 04 Dec 2023 at 21:14

Check out the nomograms here if you want a risk report based on years of outcomes:
https://www.mskcc.org/nomograms/prostate

 

User
Posted 04 Dec 2023 at 21:25

Originally Posted by: Online Community Member
As Dave says, it is a type of "survivor bias". This is a forum for people with prostate cancer, so anyone who feels they now don't have prostate cancer stops following it and commenting.

'most' who feel that they now don't have cancer, not all. There is a bias on here, undoubtedly, but not everyone who posts has had unsuccessful treatment or is incurable. Some have successful treatment that eradicates the cancer but leaves them with difficult side effects. Some, like me, are just invested in the friends we have made here. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Dec 2023 at 23:34

Menuier,

If you haven't already read the results of the Protect Trial, which compares outcomes of various treatments; you might be interested in this article. https://www.urologytimes.com/view/protect-trial-researchers-active-monitoring-yields-same-outcomes-as-radical-treatment-in-prostate-cancer

User
Posted 06 Dec 2023 at 09:14

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Menuier,

If you haven't already read the results of the Protect Trial, which compares outcomes of various treatments; you might be interested in this article. https://www.urologytimes.com/view/protect-trial-researchers-active-monitoring-yields-same-outcomes-as-radical-treatment-in-prostate-cancer

A couple of things. This isn't relevant to Menuier. It's a trial of people who were all eligable for Active Surveillance, and Menuier isn't.

My apologises Menuier, Andy makes an excellent intervention.

 All those who took part in the trial were meant to have localised low risk/immediate cancer and should have been deemed suitable for active surveillance. Initially they thought 77% were low risk.

Now more recent research casts doubt on the 'eligibility' of all those on the trial.

A far greater percentage of trial participants were now believed to be immediate risk and that 30% of them had cancer which had probably breached the capsule.

https://www.bristol.ac.uk/news/2023/march/protect-study.html#:~:text=The%20trial%20was%20conducted%20in,men%20with%20localised%20prostate%20cancer.

I'm currently in a dispute with a Trust that, contrary to NICE guidelines, advised me to have active surveillance with T2c disease.They kept trying to use the above trial results to justify their treatment recommendation, claiming that there was little difference between the outcomes of AS, RT and surgery. I kept trying to inform them that NICE guidelines state T2c is high risk and not suitable for AS and therefore the trial results are not applicable in my case

The dispute continues. 🙂

All I was trying to do was give you some comparative outcomes between treatments to aid your treatment decision. I have not managed to find any other trials comparing RT and surgery outcomes, yet it is question that people are constantly asking on here.

 

Edited by member 06 Dec 2023 at 09:52  | Reason: Typo

User
Posted 04 Dec 2023 at 18:14

First up Meunier......

Breathe.....

I genuinely dont mean to sound condesending..

Try to stop and take stock....

There are so, so many on here to help guide.

We've got this.

Whoooo.

 

Jamie.

User
Posted 04 Dec 2023 at 20:19
As Dave says, it is a type of "survivor bias". This is a forum for people with prostate cancer, so anyone who feels they now don't have prostate cancer stops following it and commenting.

However while a population figure might be reassuring, you aren't a whole population, you are you. You need to make your own choice (helped of course by your doctors' assessment of your particular case) of treatment you are happy with - and then be mentally prepared there could be less good as well as ideal outcomes.

While there isn't a "right" answer, I think most people here found communicating with real people who had been through the same dilemma and its consequences gave them a better insight into their choice than being quoted percentages.

User
Posted 04 Dec 2023 at 23:19

I wonder how many ex forum contributors have left because they've decided to just grin and bear it, or they got sick to death of talking about it? I know I've nearly reached that stage.

Edited by member 05 Dec 2023 at 10:10  | Reason: Not specified

User
Posted 05 Dec 2023 at 21:39
You are right LynEyre, and I was unfair to those who continue to contribute valuable input to a community they have benefitted from - of which you are a pre-eminent example.

But overall those who had minimal side effects and no recurrence tend to be under-represented, and Meunier can't use those commenting as representative of everyone having a particular treatment.

User
Posted 05 Dec 2023 at 23:02

Originally Posted by: Online Community Member

Menuier,

If you haven't already read the results of the Protect Trial, which compares outcomes of various treatments; you might be interested in this article. https://www.urologytimes.com/view/protect-trial-researchers-active-monitoring-yields-same-outcomes-as-radical-treatment-in-prostate-cancer

A couple of things. This isn't relevant to Menuier. It's a trial of people who were all eligable for Active Surveillance, and Menuier isn't.

Secondly, the headline in my view doesn't match the trial results, because it fails to point out that if you are eligible for Active Surveillance, you are more likely to go metastatic if you have Active Surveillance than if you have active treatment. They had expected more men on the Active Surveillance trial arm to die by now as a result of this, and this only hasn't happened yet because treatments for Stage 4 patients have got better. The other interesting thing is that the men on Active Surveillance end up with same reduction in erectile function as those who were treated, which is probably because multiple biopsies over a long period damage erectile function. Many men choose Active Surveillance in part to avoid exactly this, but it doesn't. I think the trial actually highlights the risks of Active Surveillance, which is not what you might read from the headline.

User
Posted 06 Dec 2023 at 00:10

Originally Posted by: Online Community Member
You are right LynEyre, and I was unfair to those who continue to contribute valuable input to a community they have benefitted from - of which you are a pre-eminent example.

But overall those who had minimal side effects and no recurrence tend to be under-represented, and Meunier can't use those commenting as representative of everyone having a particular treatment.

 

I don't disagree with you, JB - posts here can give a skewed impression.

What really makes me cross is the urologists / oncologists / SNPs who gloss over the risks or are blase about the potential side effects. I have seen too many on here who were truly shocked when they couldn't control their bladder the day the catheter came out, or who were confused when they stopped feeling randy on HT. They post here "Is this normal? I didn't realise! No one told me!" It really sessip me off :-(    

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Dec 2023 at 06:24

Originally Posted by: Online Community Member
(i) Vis a vis the Pet Scan - how often to they come up with something? Is it relatively rare?

In cases where there's spread, the PET scan stands a good chance of picking up mets in places like lymph glands. In some people the scan won't pick up the mets but I think it's fair to say that's a minority. As an example my PET scan picked up mets in 3 lymph glands along with my G9 and my RT was tailored to treat the whole lot at once.

In your case it sounds as though the cancer is contained so there's a low chance of spread, though it's up to a medical expert to make that judgement. I'd be asking about the importance of the perineural invasion though.

Jules

Edited by member 06 Dec 2023 at 06:53  | Reason: Not specified

Show Most Thanked Posts
User
Posted 04 Dec 2023 at 18:14

First up Meunier......

Breathe.....

I genuinely dont mean to sound condesending..

Try to stop and take stock....

There are so, so many on here to help guide.

We've got this.

Whoooo.

 

Jamie.

User
Posted 04 Dec 2023 at 18:38

Hi! Hope you are feeling a little more settled in yourself. Getting a clear diagnosis , and starting to make plans , is a key starting point. There's a lot in your post, and I'm not qualified to address all of the points you raise, but a couple of thoughts:

 - you say that you are open to persuasion on your treatment option, but you will find ( I hope!) that no one here will try to persuade you in either direction. The only thing that matters is that you reach your own conclusion on the best info you can get at the time, and are at peace with your choice. In clinical terms there seems to be little to choose between RP and RT , but there can be quite a large difference in the emotional impact of each route. Your first para indicates that the emotional components of this are very powerful for you, so you need to give that due weight in your decision making. You will see plenty of people on here who took comfort from the ' get it out at all costs'  strategy, and as many for whom the ED/ Incontinence issues carried more weight. It is very much a personal thing.

- be wary of drawing too many inferences from anecdotal reports of recurrence after RP. This is a wonderful site, but it makes no pretence that posts are statistically valid. There is inevitably quite a bit of bias in play- people whose treatment goes entirely as expected tend not to post, so the messaging is skewed.    

Good luck: the trajectory of your post- that things are not as bad as you feared- seems right. 

 

User
Posted 04 Dec 2023 at 19:43

The posts on this site are massively skewed towards problem cases.

Nearly all threads start with a post "Oh no, I have such and such a symptom I think it's cancer. I'm having tests tomorrow. I'll let you know how I get on" and we hear no more.

If we do get another post it is, "tests were positive. I've made a decision to have surgery, can anyone give me a rational reason why I should have surgery?" and we hear no more.

If we do get another post it is, "I'm booked for surgery tomorrow. I'll let you know how I get on" and we hear no more.

If we do get another post it is, "I have xyz problem, any suggestions" or five years later "I have recurrence".

So all those threads which just stop are almost certainly good news stories (or very sudden death). Consequently most posts on here are people discussing ongoing problems, but the reality is most people go through this disease and treatment with minimal problems and have no need to post here.

Dave

User
Posted 04 Dec 2023 at 20:19
As Dave says, it is a type of "survivor bias". This is a forum for people with prostate cancer, so anyone who feels they now don't have prostate cancer stops following it and commenting.

However while a population figure might be reassuring, you aren't a whole population, you are you. You need to make your own choice (helped of course by your doctors' assessment of your particular case) of treatment you are happy with - and then be mentally prepared there could be less good as well as ideal outcomes.

While there isn't a "right" answer, I think most people here found communicating with real people who had been through the same dilemma and its consequences gave them a better insight into their choice than being quoted percentages.

User
Posted 04 Dec 2023 at 21:14

Check out the nomograms here if you want a risk report based on years of outcomes:
https://www.mskcc.org/nomograms/prostate

 

User
Posted 04 Dec 2023 at 21:25

Originally Posted by: Online Community Member
As Dave says, it is a type of "survivor bias". This is a forum for people with prostate cancer, so anyone who feels they now don't have prostate cancer stops following it and commenting.

'most' who feel that they now don't have cancer, not all. There is a bias on here, undoubtedly, but not everyone who posts has had unsuccessful treatment or is incurable. Some have successful treatment that eradicates the cancer but leaves them with difficult side effects. Some, like me, are just invested in the friends we have made here. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Dec 2023 at 23:19

I wonder how many ex forum contributors have left because they've decided to just grin and bear it, or they got sick to death of talking about it? I know I've nearly reached that stage.

Edited by member 05 Dec 2023 at 10:10  | Reason: Not specified

User
Posted 04 Dec 2023 at 23:26
Just a quick thanks to all for your generous responses. It really is nice to have some relief - in preparation for the reflection to come - and certainly after the built up panic in the anxious waiting for the results - certainly when it finally accumulated last night. I don't have a partner so it is, perhaps, more difficult when one is going this alone. Still it is, I suppose, what my mother might have termed as 'character building'. That said, I think there are some who might be inclined to think I have rather TOO much 'character' as it is ... but there you go. I guess you can always add another strand to the mix. :)
User
Posted 04 Dec 2023 at 23:34

Menuier,

If you haven't already read the results of the Protect Trial, which compares outcomes of various treatments; you might be interested in this article. https://www.urologytimes.com/view/protect-trial-researchers-active-monitoring-yields-same-outcomes-as-radical-treatment-in-prostate-cancer

User
Posted 05 Dec 2023 at 21:39
You are right LynEyre, and I was unfair to those who continue to contribute valuable input to a community they have benefitted from - of which you are a pre-eminent example.

But overall those who had minimal side effects and no recurrence tend to be under-represented, and Meunier can't use those commenting as representative of everyone having a particular treatment.

User
Posted 05 Dec 2023 at 23:02

Originally Posted by: Online Community Member

Menuier,

If you haven't already read the results of the Protect Trial, which compares outcomes of various treatments; you might be interested in this article. https://www.urologytimes.com/view/protect-trial-researchers-active-monitoring-yields-same-outcomes-as-radical-treatment-in-prostate-cancer

A couple of things. This isn't relevant to Menuier. It's a trial of people who were all eligable for Active Surveillance, and Menuier isn't.

Secondly, the headline in my view doesn't match the trial results, because it fails to point out that if you are eligible for Active Surveillance, you are more likely to go metastatic if you have Active Surveillance than if you have active treatment. They had expected more men on the Active Surveillance trial arm to die by now as a result of this, and this only hasn't happened yet because treatments for Stage 4 patients have got better. The other interesting thing is that the men on Active Surveillance end up with same reduction in erectile function as those who were treated, which is probably because multiple biopsies over a long period damage erectile function. Many men choose Active Surveillance in part to avoid exactly this, but it doesn't. I think the trial actually highlights the risks of Active Surveillance, which is not what you might read from the headline.

User
Posted 06 Dec 2023 at 00:10

Originally Posted by: Online Community Member
You are right LynEyre, and I was unfair to those who continue to contribute valuable input to a community they have benefitted from - of which you are a pre-eminent example.

But overall those who had minimal side effects and no recurrence tend to be under-represented, and Meunier can't use those commenting as representative of everyone having a particular treatment.

 

I don't disagree with you, JB - posts here can give a skewed impression.

What really makes me cross is the urologists / oncologists / SNPs who gloss over the risks or are blase about the potential side effects. I have seen too many on here who were truly shocked when they couldn't control their bladder the day the catheter came out, or who were confused when they stopped feeling randy on HT. They post here "Is this normal? I didn't realise! No one told me!" It really sessip me off :-(    

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Dec 2023 at 06:24

Originally Posted by: Online Community Member
(i) Vis a vis the Pet Scan - how often to they come up with something? Is it relatively rare?

In cases where there's spread, the PET scan stands a good chance of picking up mets in places like lymph glands. In some people the scan won't pick up the mets but I think it's fair to say that's a minority. As an example my PET scan picked up mets in 3 lymph glands along with my G9 and my RT was tailored to treat the whole lot at once.

In your case it sounds as though the cancer is contained so there's a low chance of spread, though it's up to a medical expert to make that judgement. I'd be asking about the importance of the perineural invasion though.

Jules

Edited by member 06 Dec 2023 at 06:53  | Reason: Not specified

User
Posted 06 Dec 2023 at 09:14

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Menuier,

If you haven't already read the results of the Protect Trial, which compares outcomes of various treatments; you might be interested in this article. https://www.urologytimes.com/view/protect-trial-researchers-active-monitoring-yields-same-outcomes-as-radical-treatment-in-prostate-cancer

A couple of things. This isn't relevant to Menuier. It's a trial of people who were all eligable for Active Surveillance, and Menuier isn't.

My apologises Menuier, Andy makes an excellent intervention.

 All those who took part in the trial were meant to have localised low risk/immediate cancer and should have been deemed suitable for active surveillance. Initially they thought 77% were low risk.

Now more recent research casts doubt on the 'eligibility' of all those on the trial.

A far greater percentage of trial participants were now believed to be immediate risk and that 30% of them had cancer which had probably breached the capsule.

https://www.bristol.ac.uk/news/2023/march/protect-study.html#:~:text=The%20trial%20was%20conducted%20in,men%20with%20localised%20prostate%20cancer.

I'm currently in a dispute with a Trust that, contrary to NICE guidelines, advised me to have active surveillance with T2c disease.They kept trying to use the above trial results to justify their treatment recommendation, claiming that there was little difference between the outcomes of AS, RT and surgery. I kept trying to inform them that NICE guidelines state T2c is high risk and not suitable for AS and therefore the trial results are not applicable in my case

The dispute continues. 🙂

All I was trying to do was give you some comparative outcomes between treatments to aid your treatment decision. I have not managed to find any other trials comparing RT and surgery outcomes, yet it is question that people are constantly asking on here.

 

Edited by member 06 Dec 2023 at 09:52  | Reason: Typo

 
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