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A question that bugs me

User
Posted 13 May 2024 at 16:58

Hello again - this is kind of a pointless question to ask but it has been bugging me and my better half and we wondered if anybody on here might be able to help.

In a nutshell, in Spring last year, my PSA was around 12 on two tests and a firm area on my prostate was felt in the DRE. The subsequent MRI scan showed a PIRAD 3 area left posterior. The ensuing 13-core biopsy found cancer with a Gleeson score of 4+4 on the left side of my prostate but the right side was clear.

My CT body scan and bone scan both came back 'clear' apart from perineural invasion on the left side, so I was strongly advised to have surgery, which I had in July last year. Immediately after the surgery, the surgeon told me that I seemed to have cancer on both sides of my prostate and in both sets of nerves as well as in a larger area of my prostate bed so she had taken away the nerves from both sides and more of my prostate bed than she had expected.

Once all the bits and pieces had been looked at in the lab, they found I had cancer on both sides on my prostate with a Gleeson score of 4+5 which had broken through the capsule, cancer in the nerves on both sides, positive surgical margins, microscopic bladder neck involvement and a cancerous lymph node. My post-op PSA was 0.05.

Obviously, had this been evident earlier I would have been on a different treatment regime rather than the surgery. The question which is bugging us is whether all the scans, tests and biopsies could have missed all or some of the above, or whether the scans and tests saw accurately but by the time I had the operation three months later the cancer had progressed to that point? I know it doesn't actually matter but it is an itch we need to scratch.

Anybody have any light to shed?

User
Posted 14 May 2024 at 10:07

I don't know where the data comes from (as in, I can't point you to the research papers), but it's stated that 40% of original diagnosis are not correct when the histopathologist has your prostate on a tile in front of them in the lab. Of course, we only get to actually check this in the case of a prostatectomy. Usually in these cases, the diagnosis is upgraded, but occasionally it is downgraded.

This points to us still not being able to accurately diagnose prostate cancer staging and Gleason.

In the case of external beam radiotherapy, this is not particularly serious because the whole prostate is treated anyway, and the beam spill is likely to mop up any very local spread which was not known about, particularly in conjunction with HT. So we don't get to hear about under-diagnosed cases as much because the treatment works for them in any case.

In the case of prostatectomy, it's a bit more serious in that effect from having to cut wider will give you side effects you were hoping to avoid, and you still have a sharp treatment cutoff at the cut boundary, without any treatment spill past that point. The pathology also gives a hint how well the treatment is likely to have gone. Radiotherapy is available as a backup treatment in many cases.

In the case of closely targeted therapies such as SABR and brachy, there isn't much spill outside the target treatment area to catch anything the diagnosis missed. Brachytherapy Boost (which is combined with external beam) is specifically to get around this - a high dose into the known cancer, but deliberately generating treatment spill into a wider area to mop up what wasn't known about.

For focal therapies, it's even more important to have a correct/accurate diagnosis, and some focal therapy centres will rescan with top quality scanners to try and achieve this.

The most critical treatment in my view for which an accurate diagnosis is required is active surveillance. I do come across patients who were offered active surveillance, but declined and went for prostatectomy, only to find from the pathology review they were not suitable candidates for active surveillance in the first place. In my view, active surveillance requires the high grade scans used for focal therapies, but many centres offering active surveillance probably don't have these or don't rescan before offering this treatment.

User
Posted 14 May 2024 at 11:09

I asked for a copy of my MRI scans, just out of curiosity. To the untrained eye it may as well have been a picture of a black cat in a coal mine. To the trained eye I'm sure they make more sense, but they are just grey images and spotting the odd one out is probably more of an art than a science.

Dave

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User
Posted 13 May 2024 at 18:36

Hello mate,

We have a similar post op histology. I'm, T3a EPE, Gleason 9 (4+5). 

Biopsies are fallible, they can miss the most cancerous cells.

When I was first diagnosed 2 years  pre op. I was T2a, Gleason 6 and the cancer was safely contained within the prostate. I was advised to have AS and that's what I selected.

Apparently, it's rare for your Gleason score to change, so it appears that my first biopsy  had missed the more aggressive cells.

Scans should detect if the tumour(s) getting bigger. In Dec 2020, it was safely contained in the prostate T2a. In Aug 2022, it had grown significantly and breached the prostate capsule.

Weirdly during this progression my PSA remained relatively stable between 6 and 7.

User
Posted 13 May 2024 at 18:48

Trentender, I have the occasional what if thoughts but tend not to dwell on them. My GP missed a PSA of 6.9, three years later it was picked up at 7.7,did that make a difference or had it already started to spread, who knows.  I waited four months for the new robot to arrive at hospital before having surgery, I am sure my surgeon thought waiting was not an issue, would laparoscopic surgery been better than waiting, who knows.

My histology was poor with positive margins and extraprostatic extension. There is still an element of guess work with prostate cancer detection, diagnosis and treatment.

I have another PSA in a few days time ,I expect it will be another rise , I am not worried about it, if it's a rise we will have another PSMA scan and see if we can treat it. Take care.

Thanks Chris 

 

User
Posted 13 May 2024 at 18:55

I am only a new member here but here's what I think 

Given that there was more cancer involved than previously thought - from your biopsy - surgery was your best primal  treatment allowing radiotherapy as an option for future treatment 

Prostate cancer is relatively slow growing so time is  probably not an issue 

I dont think chances have been missed or that there was a better treatment path,  only when the prostate is removed  can they thoroughly examine it

 bc of your relatively young age radiotherapy isnt the first choice 

What do you think could have been done better ?

 

Edited by member 13 May 2024 at 19:30  | Reason: Add more info

User
Posted 14 May 2024 at 08:12

Thanks guys this is all interesting to read.

Lizzo37, it wasn't a question about anything being done better. I have had the most amazing care from incredible people using amazing technology from the first day of this. I am absolutely not the sort of person to tell experts how to do their jobs. As I said, it is just a question that has bugged us as to whether the technology could not see certain things happening inside me or whether the cancer was able to progress at that level. I fully accept that nothing will change the situation but I am just a naturally inquisitive and questioning sort of guy. I used to be a head teacher...enough said!!

Interestingly, one of my best friends was diagnosed at the same time as I was, with a Gleeson 8 cancer which scans showed had breached the capsule, caused perineural invasion and that he had a 'suspect looking' lymph node that they could not say either was or was not cancerous from the scans. In the light of all that he was not offered surgery but a course of hormone treatment, chemotherapy, (which he started a week after my surgery), brachiotherapy and then radiotherapy. This kind of re-raised in my mind the question I asked!!!!

User
Posted 14 May 2024 at 08:51
Unfortunately scans are only indicative, and a biopsy is rather like sticking a needle into a fruit cake and hoping you hit a cherry - it's the best tool available, but can easily miss things.

All the best,

Chris

User
Posted 14 May 2024 at 09:00

That image has made me chuckle this morning thank you Chris! 🍰

User
Posted 14 May 2024 at 10:07

I don't know where the data comes from (as in, I can't point you to the research papers), but it's stated that 40% of original diagnosis are not correct when the histopathologist has your prostate on a tile in front of them in the lab. Of course, we only get to actually check this in the case of a prostatectomy. Usually in these cases, the diagnosis is upgraded, but occasionally it is downgraded.

This points to us still not being able to accurately diagnose prostate cancer staging and Gleason.

In the case of external beam radiotherapy, this is not particularly serious because the whole prostate is treated anyway, and the beam spill is likely to mop up any very local spread which was not known about, particularly in conjunction with HT. So we don't get to hear about under-diagnosed cases as much because the treatment works for them in any case.

In the case of prostatectomy, it's a bit more serious in that effect from having to cut wider will give you side effects you were hoping to avoid, and you still have a sharp treatment cutoff at the cut boundary, without any treatment spill past that point. The pathology also gives a hint how well the treatment is likely to have gone. Radiotherapy is available as a backup treatment in many cases.

In the case of closely targeted therapies such as SABR and brachy, there isn't much spill outside the target treatment area to catch anything the diagnosis missed. Brachytherapy Boost (which is combined with external beam) is specifically to get around this - a high dose into the known cancer, but deliberately generating treatment spill into a wider area to mop up what wasn't known about.

For focal therapies, it's even more important to have a correct/accurate diagnosis, and some focal therapy centres will rescan with top quality scanners to try and achieve this.

The most critical treatment in my view for which an accurate diagnosis is required is active surveillance. I do come across patients who were offered active surveillance, but declined and went for prostatectomy, only to find from the pathology review they were not suitable candidates for active surveillance in the first place. In my view, active surveillance requires the high grade scans used for focal therapies, but many centres offering active surveillance probably don't have these or don't rescan before offering this treatment.

User
Posted 14 May 2024 at 10:42

That is really interesting reading Andy thank you!

User
Posted 14 May 2024 at 11:09

I asked for a copy of my MRI scans, just out of curiosity. To the untrained eye it may as well have been a picture of a black cat in a coal mine. To the trained eye I'm sure they make more sense, but they are just grey images and spotting the odd one out is probably more of an art than a science.

Dave

 
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