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It doesn’t even feel like I have prostate cancer

User
Posted 09 Nov 2024 at 17:03

Diagnosed 30/9/2024 Gleason 6(3+3). On AS currently. It doesn’t even feel like I have cancer.! Surreal or what! 
My first PSA since diagnosis is on 25/11/2024. My last PSA 13/6/2024 was .6.6. What rise would be a cause for concern?

it doesn’t help when numerous articles online suggest that Gleason 6 may not even be cancer!

User
Posted 09 Nov 2024 at 20:48

Hi Andy.

Your recent PSA was 6.6  but what was it when you were first diagnosed in Sept 2024?

Any constant rise in PSA levels could be a reason for concern and require further investigation.

Please don't ever get complacent about  being on active surveillance. Keep getting your regular PSA tests and ensure that you get periodic follow up MRIs. I am speaking from personal experience where my Gleason 6 (3+3), T2 disease, in just 20 months, progressed to Gleason 9 (4+5) T3a. During this apparent progression my PSA remained relatively stable.

Despite my AS failure  I'm still a fan of active monitoring  so long as it is ACTIVE. Also remember most men don't have any symptoms until it's too late.

There is debate as to whether Gleason 6 (3+3) is clinically significant cancer. The problem with that is, biopsies are not a exact science, often, probably as in my case, more aggressive cancer cells can be missed.

I hope your AS like the majority of those on it is successful, but always take care.

Good luck mate.

Edited by member 09 Nov 2024 at 20:57  | Reason: Additional text

User
Posted 09 Nov 2024 at 21:26

I’ve not had a PSA test since the last one taken on 13/6/2024 when it was 6.6.

Biopsy was on 29/08/2024.

Next PSA is on 25/11/2024.

I’m interested to see what that is and whether it has risen.

My full PSA history is as follows:

PSA Levels

13/06/2024 6.6

11/05/2023 5.3

30/03/2023 6.3 (UTI at time of test)

15/08/2022 5.3

14/07/2021 4.8

16/06/2020 4.0

22/04/2019 4.6

13/04/2018 4.8

07/02/2017 4.7

08/11/2016 5.3

Edited by member 10 Nov 2024 at 07:02  | Reason: I entered the biopsy date incorrectly

User
Posted 09 Nov 2024 at 21:47

Hi again Andy.

I didn't realise that you've been having regular PSA tests for the past 8 years. I thought your first would have been about the time of your diagnosis in summer this year.

Apart from your latest biopsy, 22/08/24 have you had any others or MRI scans during the previous last 8 years? 

Is there any particular reason why you've been having PSA tests for so long?

 

User
Posted 10 Nov 2024 at 07:11

Hi Adrian,

I have had regular PSA tests since 2016 because of a long history of regularly recurring prostatitis and its associated symptoms. 

I have had just the one MRI on 22/08/2024. Left side of prostate had suspicious areas and was PI-RAD 5. There were also other PI-RAD 2 areas on the right side. All contained within the prostate.

I got the MRI because my last PSA results were the highest yet and the two year trend was moving upwards.

User
Posted 10 Nov 2024 at 07:29

Cheers Andy thanks for the clarification.

I'm not medically qualified, but as your PSA has remained pretty similar for years and as your cancer is low grade and is safely contained in the prostate, AS seems ideal.

I hope all goes well, and like many who are been monitored, that you never need any radical treatment.

Good luck mate.👍

User
Posted 10 Nov 2024 at 14:45

hello mate

What is the size of these lesions?

User
Posted 10 Nov 2024 at 21:55

Hi,

Consultant.’s diagnostic confirmation letter stated:

Left anterior - Three cores of prostatic tissue are received, one of which contains animated type adenocarcinoma Gleason 3+3, measuring 7mm in maximum size (discontinuous growth).

 

Left posterior - Nine cores of prostatic tissue are received all of which contains animated type adenocarcinoma Gleason 3+3, measuring 12mm in maximum size (discontinuous growth).

User
Posted 12 Nov 2024 at 10:30

Originally Posted by: Online Community Member

There is debate as to whether Gleason 6 (3+3) is clinically significant cancer. The problem with that is, biopsies are not a exact science, often, probably as in my case, more aggressive cancer cells can be missed.

Hello Adrian,

Did they take the samples by fusion biopsy targeted at the suspicious lesion
and systematic or was it just a systematic biopsy?
Was it transperineal or transrectal?

B.R.
User
Posted 12 Nov 2024 at 11:08

My first was an up the bum,  TRUS biopsy. Only 2 out of 15 cores, only 10% cancerous, Gleason 6 (3+3), T2a

My second, 20 months later, was transperineal under GA, in their words "It's  more accurate." 25 cores, 20 cancerous to 40%, a combination of 3+4, 4+3, and 3+5 overall Gleason 8 (3+5), the cancer had breached the prostate wall, T3a. After surgery upped to Gleason 9 (4+5).

I have a strong suspicion that the less accurate TRUS biopsy missed the more cancerous cells. Apparently it is quite rare for a true, accurate Gleason score to progress. It begs the question, "Why not go for the more accurate biopsy in the first place?"

I believe TRUS biopsies are being phased out.

User
Posted 12 Nov 2024 at 11:13

Exactly. I firmly believe that in the first random TRUS biopsy the detection
of the most aggressive cells was overlooked and by chance only 3+3 cells were obtained.
TRUS biopsies are being abandoned.
Although it is also true that it is not impossible for a 3+3 tumor
to progress to something more aggressive in the future,
but apparently this takes a long time and is not so common.

B.R.

User
Posted 12 Nov 2024 at 21:31

Originally Posted by: Online Community Member

Hi,

Consultant.’s diagnostic confirmation letter stated:

Left anterior - Three cores of prostatic tissue are received, one of which contains animated type adenocarcinoma Gleason 3+3, measuring 7mm in maximum size (discontinuous growth).

 

Left posterior - Nine cores of prostatic tissue are received all of which contains animated type adenocarcinoma Gleason 3+3, measuring 12mm in maximum size (discontinuous growth).

 

Hi Andy,

For what it's worth and it's only my opinion, I would imagine that given your relatively young age, at some point you're going to have to treat this.

When my 2nd saturation TP biopsy came back positive, I only had 2 cores positive. Both only had small amounts of cancer detected (5mm in one and 4mm in the other) and both were 3+4 (only 10% pattern 4)

Although younger than you, it was made clear to me that whilst it was fine to go on AS, that could only ever be a stopgap before treatment became inevitable.

For me the big thing was that obviously, if it were to have developed and become more significant then I would have had fewer treatment options.

You'll see from my profile that having had Brachytherapy about 18 months ago, I'm currently in a bit of no-man's land (which also isn't that unusual!) - but regardless of my current 'status', I believe I made the right choice - even treatment failure would prove I didn't have time to hang around! 

So, although my final destination is a little unclear at the moment, I still wouldn't hesitate in recommending Brachy. It's got a fantastic success rate (something over 93% from memory) and from my experience, the procedure and side effects are no worse than having a biopsy. Walk in the park 😉

Good luck! Paul

User
Posted 14 Nov 2024 at 20:01

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Hi,

Consultant.’s diagnostic confirmation letter stated:

Left anterior - Three cores of prostatic tissue are received, one of which contains animated type adenocarcinoma Gleason 3+3, measuring 7mm in maximum size (discontinuous growth).

 

Left posterior - Nine cores of prostatic tissue are received all of which contains animated type adenocarcinoma Gleason 3+3, measuring 12mm in maximum size (discontinuous growth).

 

Hi Andy,

For what it's worth and it's only my opinion, I would imagine that given your relatively young age, at some point you're going to have to treat this.

When my 2nd saturation TP biopsy came back positive, I only had 2 cores positive. Both only had small amounts of cancer detected (5mm in one and 4mm in the other) and both were 3+4 (only 10% pattern 4)

Although younger than you, it was made clear to me that whilst it was fine to go on AS, that could only ever be a stopgap before treatment became inevitable.

For me the big thing was that obviously, if it were to have developed and become more significant then I would have had fewer treatment options.

You'll see from my profile that having had Brachytherapy about 18 months ago, I'm currently in a bit of no-man's land (which also isn't that unusual!) - but regardless of my current 'status', I believe I made the right choice - even treatment failure would prove I didn't have time to hang around! 

So, although my final destination is a little unclear at the moment, I still wouldn't hesitate in recommending Brachy. It's got a fantastic success rate (something over 93% from memory) and from my experience, the procedure and side effects are no worse than having a biopsy. Walk in the park 😉

Good luck! Paul

 

This is pretty much what my surgeon said. It’s not a case of if, but when you will need treatment and his estimation was within 3-5 years. I went away and did some research and saw that under diagnosis was quite common and thought that I was only delaying the inevitable, and the younger I am, hopefully the better the outcomes will be 🤞🏼

User
Posted 14 Nov 2024 at 22:54

This was my scenario too, the surgeon and oncology nurse both said that I will need treatment at some point. I didn’t want to take the risk of the disease progressing to a point where my options became limited. 

User
Posted 15 Nov 2024 at 12:00
Hey Andy,

I am 49 and was diagnosed with Gleason 7 (3+4) back in March 2024. I decided to monitor things, while I spoke to various consultants over the course of about 6 months, then I elected to have surgery to remove my prostate. I am 3 days out of surgery, back at home, and everything seems to have gone as well as it could.

 

I had concluded that PSA really isn’t the best indicator of disease progression during Active Surveillance. It is a useful proxy measure, pre-biopsy, and it a direct measure post treatment. But I personally question the way in which PSA tests are currently used during Active Surveillance - the only way you are going to truly know if disease has progressed is with another biopsy, which comes with its obvious problems. This dilemma was repeatedly confirmed when I asked different consultants about it during that six months.

 

See my profile for how my PSA jumped about too - I happened to observe that time of day seemed to affect my results too (with testosterone higher in the morning - PSA is correspondingly higher too) and there is a published study that supports that.

 

Everyone's diagnosis and consequential treatment pathway will be unique. My decision was made somewhat easier as I was scored Gleason 7 rather than Gleason 6. But I still wrestled with it a lot. I eventually decided that acting early gave me the best possible chances (balancing possibilities of erectile disfunction, incontinence and cancer progression) but there's that lingering thought it might be over treatment - I'll never know.

 

At Gleason 6, there's most certainly a huge body of clinical support for leaving it alone and that's what all the consultants I spoke with were saying to me too. As you say, many would consider it not a cancer to act on as such.

 

The problem is determining when to act - as we are left with either PSA tests (a proxy at best) or further biopsies (invasive and unwieldy).

 

I truly hope there's a better way to be able to predict cancer progression off the back of MRI data in the near future. I am really keen to find out if there's endeavours underway in that regard (I'd love to hear from anyone who knows). It feels like that's the missing piece of information for those on Active Surveillance, with Gleason scores that do not indicate immediate action.

 

Others here have acted with a Gleason 6 - but I think you need to look at the very specific nature of your own samples and imaging, along with your own personal circumstances. It is a very personal journey and decision. I'm sure you are taking everything into consideration - it's no fun having it all bouncing about in your head, many of us on this forum have been there and I've found it incredibly helpful to see that others are going through similar but different journeys.

 

Do keep us posted - all the best,

Mark

Edited by member 15 Nov 2024 at 12:10  | Reason: Not specified

User
Posted 15 Nov 2024 at 14:58

Originally Posted by: Online Community Member
I truly hope there's a better way to be able to predict cancer progression off the back of MRI data in the near future. I am really keen to find out if there's endeavours underway in that regard (I'd love to hear from anyone who knows).

Hello Mark.

I was pleased to read on another conversation, that you've had the op and that you are recovering well. 👍

I agree with you that PSA tests are quite unreliable, but I suppose they're the best non invasive indicator we've got. On top of that, even biopsies can be literally 'a bit hit or miss'. 

I suppose in the future methods for detecting the disease will improve. I posted this some weeks ago which hopefully may help improve prognosis.

https://community.prostatecanceruk.org/posts/t30653-Genetic-testing-could-significantly-improve--prognosis

 

 

Edited by member 15 Nov 2024 at 16:29  | Reason: Typo

User
Posted 15 Nov 2024 at 16:17

Thank you Mark. A very informative and reasoned reply.

Edited by member 15 Nov 2024 at 16:18  | Reason: Missed a word

 
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