Confused by diagnosis

I appreciate your consternation at being given two different opinions, but although viewed by experts there can be a difference of opinion, its not an exact science.

My first biopsy revealed only 2 out of 15 cores, one from each lobe of the prostate were cancerous, at only 5% and 10%. Gleason 3+3. I was told that most urologists class this type of cancer as benign and my research corroborated that.

20 months later that had risen to 20 out of 24 cores most at 40%. Gleason 9(4+5).

I was quite alarmed by this rapid progression, especially as my PSA levels had remained relatively  stable. 

Unfortunately most of my surveillance was during COVID restrictions. A recommended 6 month follow up MRI scan was not conducted and it hampered follow up consultations. When I asked whether it was normal to find such progression during AS, I was told 30% of of patients would require radical treatment at some stage. I was also told there was a likelihood that the first biopsy had not revealed the true extent of the disease.

On reflection I suppose I was unlucky. Perhaps the first TRUS biopsy had missed the most cancerous areas - unlucky. Perhaps had the follow up 6 month MRI scan not been cancelled, it may have shown disease progression - unlucky. Poor consultations and communications due to COVID restrictions - unlucky. Being in the 30% that need radical treatment during AS - unlucky.

But I'm still  much luckier than many others. 👍

Edited by member 28 Dec 2023 at 14:57  | Reason: Additional text.

Well the decision is to go on AS for now, after another chat with my Urologist. She says she would have suggested that if the original path report had said 3+3 instead of 3+4. 

Im feeling quite positive at the minute with this choice, although it will take some getting used to. I just couldn’t get my head round risking the likely side effects of treatment yet, if I can put them off for a while.

Hi Harty

Agree with what others have said, get rid, as until its out and they have diced and sliced the biopsies are an indication of grade/stage etc.  After removal, the grading and staging can go up or down.  My OT had his surgery at Addenbrookes (robotic) and will be 2 years post op in March.  If you have any questions, happy to help.  Best wishes.

This thread started with a post about a marginal decision between treatment and AS. I always err on the side of minimal intervention and keep a close eye on things in such a situation. I think the argument for radical treatment is getting stronger. I do have two friends on active surveillance and their PSAs both jump around between about 10 and 15, so you PSA may come down at the next test, but I think you need to keep a very close eye on this, possibly with MRI scan rather than just PSA test.

Thanks for the update Ian.

Hindsight is a wonderful thing. IF you end up having to have radical treatment you could argue that you could have done it a few months earlier BUT on the otherhand, by taking the choice you did, those 'lost months' have all been free from likely radical treatment side effects. Enjoy your further 3 months side effect free, time. Who knows, you may still not need radical treatment after that.

All the best pal.

Edited by member 03 Apr 2024 at 16:45  | Reason: Typo

'I trust my consultant, who recommended surgery, and am now very confused. Has anybody else been in this situation.'

I am sure there are many men, including myself, who are and have been in a similar situation. However because diagnosis depends on subjective judgement (it is possible that in the future AI will probably provide more definitive diagnosis)  you have to rely on the experience of consultants and your confidence in them. I had confidence in my urologist but not in the oncologist so I chose surgery.  Any decision you make or any advice you seek from fellow sufferers and consultant there is strong element of cognitive dissonance; therefore, ultimately you have to make your decision on your gut feeling and that is what I did and many others do. Psychological urge to get rid of the prostate plays a big part in many men choosing surgery, as it did in my case. Good luck and I hope you feel comfortable and confident in the decision you make because a lot of healing takes place in our heads.

Morning Harty

My PSA in the 9 month period prior to my operation at Addenbrookes was 5.32 (March 2021), 5.76 (April 2021) and 6.01 (September 2021).  I had 2 biopsies, one under local anesthetic which found only a few core samples were cancerous and that it was only in a small part of the prostate and one under general anesthetic 4 months later which found that most of the core samples taken were cancerous and that the cancer was throughout my prostate. Both times the Gleason score was 3+4 = 7, with less than 5% of the cancer being graded 4. I was initially on AS but following the last biopsy decided that I needed to take action and opted for surgery. Following the operation and the cut and dice of my prostate , my Gleason score and percentage remained the same but I was upgraded from a T2 to a T3a. This was because the cancer was bulging out of the prostate and had broken through the capsule, something that was not found on the scans. I had negative margins so there is a good chance that the cancer has all been taken out.

If I knew at the time of my initial diagnosis what I knew following the histology, I would have opted for surgery far sooner. Whether that would have meant the cancer remained within the capsule when it was removed who knows, but it could have done.

By the way, it might be easier to have all your comments on one thread rather than start a new thread

Ivan

Ok, I saw the surgeon at Addenbrookes yesterday, and the discussion did not go as expected. He said he would be happy to carry out the RARP if that is what I want, but that he strongly recommends that I go onto AS. He is happy with the revised diagnosis of 3+3=6 on both sides, and said that given my age, general health, the position of the tumours and the fact that they are well contained and nowhere near the capsule, he really thinks I should wait and monitor things. He went so far as to say that if someone operated on his father, with my cancer, he would want to press charges, and that whilst he was happy to operate if I wish, he would write "over treatment" in my notes!

I was a bit knocked sideways to be honest, as I thought I was there to discuss the details of the op and get signed up. Having slept on it though, I have to acknowledge that his years of experience must count for more than my panicky desire to be rid of the thing, and that if I can buy myself a few more years (hopefully) of only peeing when I want to, and still being able to coax a bit of life into the old fella downstairs, then I would be daft not to do so.

Final decision doesn't have to be made yet, but I think I am probably going to heed his advice and wait this out for a while.

1. I cannot believe that he believes that the PCa will cure itself, it won't so at some point he will need to act.

2. AS is delaying the inevitable.

3. He might believe that giving you an extra year without the side effects is in your favour. Only you can decide whether that is true and whether living with the knowledge that there is something there that will eventually need radical treatment is better/worse than knowing you are going to have a period of ED and incontinence

4. Removing the prostate at this stage should give a much higher chance of nerve sparing as the cancer is completely contained.

5. Doing the surgery now might impact on his and the NHS workload

6. It has been known for G&T scores to be upgraded when the prostate is on the lab bench.

Evening Ian.

I've experienced extreme fatigue, lack of concentration, impatience and anger. Unlike your good self I cannot remember having a solid 8 hours kip for years. I don't know if these symptoms are physically or psychologically connected with the disease.

Adrian

Although everything is automated and electronic, it still needs your GP to approve publishing to the NHS app. During the Christmas period that could be the hold up.

Morning Ian

If it was me I would want to come off AS and start treatement. I did just that when my PSA score was still rising after around 4 months on AS. And if it was me, I would opt for surgery. As you know I did just that and although after my prostate was removed and sliced and diced my Gleason score stayed the same (3+4=7, with less than 5% being grade 4) my staging was increased from T2a to T3a (because the cancer was found to be bulging out from the prostate).

Ivan

Hi Ian,

My first consultation was 17th December 2020, the letter summarising it was typed on 11th January, 2021. This was at the height of COVID restrictions.

Keep them on their toes, mate. 🙂 

Hi Ian,

The histology of my removed prostate revealed perineural invasion. I emailed my consultant's secretary to ask what it meant, she contacted him for me but I never got a clear reply. I'll ask him direct at my next telephonic consultation in mid February. I suspect it isn't good news. I think it means cancer cells were found surrounding or growing alongside a nerve fibre within the prostate. Apparently in my case this can increase the chance of recurrence.

It also showed extraprostatic extension, (I think that means it had breached the prostate capsule) but no extraprostatic perineural invasion ??? 

All Double Dutch to me.

As for your other points I haven't got a clue mate.

Edited by member 18 Jan 2024 at 17:56  | Reason: Not specified

Hi Harty17/21L,

I can only pass on what I understand about " Crib" (Cribiform Morphology).  I was diagnosed with this from my own Histology Report (i.e. after surgical removal).  It seems to mean that, under the microscope, the cancer shows a different pattern to the standard form, and this is often indicative of a possibly more aggressive cancer.

I can't help at all with your other queries - sorry.

Best wishes,

JedSee.

I've only just seen this post. Crib/IDC is aggressive. Maybe this was a miniscule amount? Your PSA history from December was a bit steep. I'm not a medic I haven't seen your test results, so I don't know how to interpret this.

After your PSA next March, make sure you have a face to face meeting with the consultant.Take in your biopsy report, because you can be sure the consultant won't have his copy. Ask him to explain it to you, and confirm if you are still suitable for AS.

In some ways, it doesn't matter which lab is right. For AS to be a good option, the info needs to suggest everything is stable and you have to feel confident that the AS is actually active and you are being surveilled! Neither of these seems to be case for you- lots of errors and confused dates and changes of heart / approach; no wonder you are losing faith. The cribriform would also worry me. As I said in the previous post, I don't think it is so urgent that you need to panic but, looking at your previous post your next appointment is in May and perhaps that is the right time to just say "nope, I want treatment please." I am not sure what help a new MRI and biopsy would be to you except if you were considering staying on AS which I don't think you are? 

My father-in-law died because his AS wasn't done properly so while I think it is the right of any man with low scores to choose AS and avoid / postpone treatment if he can, I am probably hyper-suspicious of hospitals that don't seem to do it properly. 

No, we had no interest in doing any of that - we just needed to understand how it happened and what the hospital would do differently in future. 

The info is on my profile but in short, Stan was on AS and his PSA dropped mysteriously - from 23 to 21 and then into single figures. We asked for new scans but these were refused - AS guidelines were that a new scan would be done if the PSA rose, not fell. We asked whether other meds (specifically, his heart meds) could cause an inexplicable drop in PSA but they said not and not to worry about it. I think in the end the PSA dropped to 2 or something like that. When he was admitted to hospital via A&E for severe oedema, a scan showed that the cancer had spread to his liver and kidneys; he died a couple of days later. It just wasn't realised that in rare cases, prostate cancer can stop producing PSA as it gets more aggressive. If we had got the scans when we asked for them, he could have started HT but the AS guidelines don't cover PSA falling - just rising.  

Edited by member 03 Apr 2024 at 20:19  | Reason: Not specified

Hello mate.

Thanks for the update. I was just about to pm you to see how the consultation had gone. 

Due to the discrepancies of your initial diagnosis, your suitability for AS was questionable. At least your in good hands now. I hope your follow up MRI scan is favourable. Did he mention having a follow up biopsy or is he going straight for the op?

It's understandable that you feel that way. AS is a wonderful thing when it works. According to research it works often, but you don't get that picture on here. Perhaps those who find it a success never use this site?

Please keep us updated. It'll save me bombarding you with pms.

Best of luck, buddy.

PS: The bloke in charge seems to be in command of the situation. I bet you could see your face in his shoes. 😁

Harry, do your pelvic exercises up until your op, don't do them with the catheter in is the advice I was given. A zoom support group meeting some of us attend has a physio.  She tells us to practice contracting the pelvic muscles as we go from a sitting position to a standing position. Hopefully that becomes an almost automatic action and helps reduce leaking on the way to the toilet.

I personally wouldn't make any drastic changes to my diet a few weeks before surgery, unless my surgeon told me too. It may be worth asking your medical team on that one.

Hope all goes well.

Thanks Chris 

Hello mate, I'm disappointed to hear that your disease, like mine, has appeared to have significantly progressed during AS. At least you have a date for the op and I hope that you have a speedy and full recovery.

Edited by member 05 Jul 2024 at 03:18  | Reason: Reduce text