Confused by diagnosis

Prostate biopsy samples are interpreted by the human eye. One person may call something as a 4 the other call it a 3. Sounds like the first pathologist was a pessimist the second an optimist. You're decision will be guided by whether you are a pessimist or an optimist.

With all due respect I disagree with you.

I don't think anyone is suggesting the cancer will cure itself but there has been extensive research suggesting that far too many men with Gleason 3 + 3 prostate cancer are electing radical treatment unnecessarily. Some of these cancers are so slow growing that they can be safely dealt with by active surveillance.

However many on AS will find their disease progresses and will require further treatment.

In Dec 2020, I was diagnosed with T2a. Low volume low grade, Gleason 3 + 3 cancer, with reasonable safety margins. I did my own research and agreed with the MDT decision to go on AS.

I had regular 3 monthly PSA checks which remainded fairly stable between 4 and 6.7.

Unfortunately  a follow up MRI scan 20 months, later revealed that my disease had progressed. It was bilateral and had just breached the prostate capsule. My second biopsy showed that the cancer was now high grade, high volume. Gleason  4 + 5.

In Feb 2023 I had a robotic prostatectomy.

I suppose in hindsight I'd have been better off having surgery earlier but c'est la vie.

From my experience I've learnt that biopsies, especially TRUS, can be hit or miss. PSA tests are a good indicator but not conclusive.

I cant remember the exact percentage of those who never need any treatment when on AS but it was high enough for me to chance it.

Edited by member 18 Oct 2023 at 10:24  | Reason: Additional text

PSA result is finally in and it’s risen to 6.8. So far It’s been 5.2,  5.9 and now 6.8. Going to sleep on it, but probably roll the dice again and see what happens in March. Hope you all had a good Christmas!

Ian.

Edited by member 27 Dec 2023 at 19:36  | Reason: Not specified

'I am a bit concerned at the rate of rise though,.........'

Edited by member 29 Dec 2023 at 12:34  | Reason: Not specified

Hi

After an initial diagnosis of 3+4=7 N0 M0, I was referred to Addenbrookes to discuss RARP. They have now disagreed with the original team and say I am 3+3=6, so now have AS available as an option

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

Morning Harty

My prostate was 55cc and the lesions were 15mm and 8mm, and the N & M numbers before surgery were zero. And were again confirmed as zero after surgery. My understanding is that the lesion size does not necessarily  mean that that is the size of the cancer it is an area in the prostate that has shown up on the scan as being different.

By the way, I have just today responded to the private message that you sent me last night

Ivan

Morning Harty

You are between a rock and a hard place as your PSA is rising (5.9 when last tested), the biopsies have found cancer, though it has "only" been graded as a 3+3=6, and it is likely that you will  at some stage need to undergo treatment.

As you may recall, I decided to start treatment when my PSA reached 6.01, having increased from 5.76 in April of the same year, though I was a 3+4=7 (with less than 5% of the cancer being graded  4). You may also recall from my comments that based on the scans and the finger test I was initially a T2  but that was upgraded to a T3a when during the cut and slice of my prostate the cancer was found to have broken through the capsule and was bulging out. Now, it is very unlikely that that situation only existed after my last scan in September and must, because of my cancer's relatively low grading, been like that  much earlier.

Only you can make the final choice as to how to proceed and obviously do need to take account of what the experienced and professional consultant told you and what change(s) the operation will have on you.  If I decided not to go ahead with surgery at this time I would certainly want PSA tests being undertaken every 6 months. 

Ivan

Thanks Adrianus

I think my main concern is/was that in my urologists words they found quite a lot of PCa in the biopsy - 11 cores from 20 positive, 6 one side and 5 the other side, and I have one pathologist saying it is all 3+3, and another saying one side was 3+4. I am on AS for now, and will see what Decembers PSA test results are. Thankfully the one thing they agreed on was that it was well contained, so hopefully if it starts to grow, they will spot it in plenty of time.

Ian.

Macmillan produces a really helpful guide to the emotional impact of having cancer. All the symptoms you describe are mentioned by Macmillan - having low mood, anxiety or depression is very common when diagnosed with a serious illness. You should see some improvement once you become accustomed to the diagnosis and establish a new normal

Hi Ian,

I'm disappointed to see a continued rise.

I know I must sound like a cracked record  but as a friend, I feel compelled to, once again, retell my AS story. It occurred during COVID restrictions which may have slightly impeded monitoring procedures, but in less than twenty months, my cancer had progressed from PSA 5.6  Gleason 6(3+3) only 2 out of 15 cores cancerous (only 5% and 10%) T2c, Grade 1; to PSA 6.6, Gleason 9(4+5), 40% cancerous in 20 out of 24 cores, T3a. Grade 5.

After my first MRI scan and biopsy I was told, like you, that there were reasonable safety margins, yet 20 months later they found extraproststic extension the capsule had been breached.

If your consultant thinks it's safe to continue for another 3 months, great stuff, but remember that conflicts with the advice of another one who appeared more in favour of surgery. 

Your initial biopsy was, on the face of it, worse than mine. Your tumour(s) were bigger than mine, you had more positive cores and there was confusion over whether you were Gleason 6 or 7.

Knowing what I know now, I think if I were you, I'd be asking for another opinion as to whether AS was still deemed appropriate. If so, as well as regular PSA checks, I would also ask for follow up MRI and if applicable another biopsy, within a year from your first one.

Perhaps, my first biopsy missed something or maybe I was just  unlucky that my disease progressed so rapidly. However it was very unsettling to be told how extensive and aggressive the disease had become, and that it may have already spread else where. I would never want you to be in that dreadful position.

Your clinicians are obviously far more knowlegeable than me but I've  experienced the flaws of AS and feel justified in warning you about them.

Sorry if I've rambled on and told you things that you'd probably not really want to hear, but proper friends sometimes have to do that.

To sum up, I'd say if there is a general consensus that AS is an option, and you chose it,  please ensure that you are monitored correctly. Don't be palmed off with just 3 monthly PSA checks and telephonic consultations. Insist you have other procedures to ensure your safety.

Best of luck mate. 

Adrian.

Edited by member 28 Dec 2023 at 10:05  | Reason: Additional text

Thanks guys. I think I will leave things for 12 more weeks and see what happens in March. If I get 3 increases in a row, then to my mind that rules out coincidence or quirky results.

Ive already had a second opinion (Adrian) on my diagnosis, which is what put me on AS in the first place. I think if I ask for a third they may have a sense of humour failure.

My original consultant, who said it needed to be treated, has concurred with the Cambridge team for now, and agrees with AS. 
Another rise will tell my simple mind that things are growing, and won’t stop growing until removed or deactivated. I shall find out on or around my 60th birthday, so may be celebrating with a change of plan 👍

Hi folks

I wonder if any of you can help me understand a couple of bits I have now seen as of today, in my biopsy report (I requested a copy and just received it).

A bit of background - I requested it because my wife saw a PCUK publication which stated that men with more than 5mm of cancer present in a single core, should not be offered AS.

A) I have 3 cores with 6.9mm, 10mm and 11mm in them respectively.

B) I have 1 core with Perineural Invasion present.

C) I have 1 core with Crib/IDC present.

I don't really understand the significance of B or C, so thought I'd consult the wealth of knowledge on here?

Thanks in advance for any replies.

Ian.

Edited by member 18 Jan 2024 at 15:35  | Reason: Typo

this is one of the reasons my husband decided against AS, I am worried sick about the risks of damage from RT but equally worried about delays with AS and spread as contact with CNS is as hard as contacting Robbie Williams 🤦‍♀️ not helped by conflicting MRI and biopsy. CNS called Wednesday saying she’d had a message he wanted to talk - he left the message for a call back two months ago … 

it’s hard to know what’s best. 

If it is of any help, I had surgery to remove my prostate at Addenbrookes late December 2021 and all the surgeons there have a great reputation for undertaking this particular procedure. My recovery has been virtually textbook, though because everybody is different, even with the same staging, nothing can be guaranteed.

My history,if interested can be found under my profile.

Ivan,

The trend is ever upward, as mine was, and if I was you I would come off AS and decide on a treatment plan.  I was on AS for around 6 months and although my  Gleason score remained the same (3+4=7) after my prostate was removed and sliced and diced my staging was increased from T2 to T3a (Because the cancer was bulging out of the prostate).

Ivan

So I finally spoke to the consultant today. Whilst stopping short of saying the second opinion was wrong, she admitted there was a perfectly good chance that this was the case and that we had been misled. She also informed me that my original diagnosis of 3+4=7 from Peterborough, was given after my biopsy results were reviewed by two separate Pathologists. The SMDT decided to go with the version from the other Pathologist and downgraded my score to 6!

She fully expects my PSA level to rise again by my next test in June, at which point she will get me another MRI scan done, another biopsy for re-staging, then we can talk RARP. I questioned the 3 month wait but she said to trust her, and that it would be better to have another test result to base her advice on. I have to trust her knowledge and experience here, so didn't question her further.

Very frustrating, but it looks like I should have just cracked on with treatment back in September.

Given today’s events, I thought it would be more useful to update this thread rather than the one I started last week.

After 4 consecutive rises in PSA, I was referred to a very well respected surgeon at a large clinic in Central London. 

He has overturned the “downgrading” of my diagnosis and so we are back at 3+4=7. He also said that given the high tumour volume (bilateral), and presence of Cribriform, this should have been dealt with last year, rather than me being offered AS.

He wants to do another detailed MRI this week so he knows what he’s dealing with, then pending the results of that, I am scheduled for surgery on July 17th.

The rollercoaster ride continues.

Ian.

Edited by member 24 Jun 2024 at 22:26  | Reason: Not specified

Thanks Adrian

No more biopsies, just straight for the op. Just depends what the new MRI shows I guess. Need to see what's been going on down there these last few months. Pretty pi**ed off to be fair, but as you say, I'm in good hands now. Although I did forget to check his shoes.....

Hi mate.

What I wish I'd done, on the run up to surgery, was to persuade the wife to join me in as much 'horizontal jogging' as possible.  😄

Unfortunately, post op, it maybe many months before you can 'do the biz' again, so make the best of it whilst you can. Plus, if you need to, it might help lose a pound or two.

Good luck buddy.

Edited by member 29 Jun 2024 at 11:14  | Reason: Typo

So I had a meeting with my surgeon this morning, who has reviewed my latest MRI results. A year ago I was diagnosed with bilateral disease, but well contained within the centre of the Prostate. I then had my Gleason score downgraded (incorrectly it turns out) and was told not to worry, it is a very slow growing cancer and I would be fine on AS.

Today I was told that I have got significant anterior disease (bilateral), and as a result of it now growing all the way to the top of the Prostate, they wont be able to do Retzius sparing surgery, or save many of the nerves. Just to add the icing to the cake, I am told that I have a small bladder sphinctre (10mm) so will experience a longer than average period of incontinence after the op.

Bit gutted, but life goes on. Surgery is on the 17th, so now need to crack on with the pelvic floor exercises.

Cheers Adrian. Yes, I think I’ll get the treatment out of the way and then decide what to do. I was categorically told when they “downgraded” my diagnosis, that I had nothing to worry about for a few years at least, and should go on AS.

I’m now told that they were wrong with their assessment when downgrading, and also that any presence of Cribriform automatically scores as a 4 at best, so it could never have been 3+3=6. Either someone didn’t read the report properly, or they are incompetent.

The only thing I don’t know now, is whether the first MRI didn’t pick up the size of the tumour, which I find unlikely as it is apparently of significant size, or whether it has grown that much in a year. If the latter, then it is clearly quite aggressive.