T2c disease and active surveillance.

Evening all.

T2c disease is where cancer is found in both prostate lobes, bilateral disease.

 My first MRI scan detected a small focus on the right lobe, MRI staging T2a. A subsequent TRUS biopsy showed  one core taken in the  right targeted area and one taken randomly on the left lobe were cancerous. Summary Adenocarcinoma, Gleason 6 (3+3) in 2 out of 15 cores. Grade group 1.

Although low grade and low volume, as cancer had been found in both lobes, I  believe it should have been upgraded to T2c.  However, the subsequent MDT meeting left it at T2a, and despite a family history of the disease, I was classed as low risk. The MDT meeting recommended active surveillance.

A week or so later,  I had my first consultation. Like most, at this time I knew very little about the disease. I was assured that because the cancer was  low grade, low volume and would grow very slowly that I was suitable for active surveillance. On their advice I took that option.

My PSA was 5.6 at this stage and over the next 18 months it remained fairly stable fluctuating between, 4.8 and 6.6. I had these PSA checks every 3 months, and they were followed up by consultations.

After 18 months I was told that I was due a follow up MRI. Two months later, the follow up MRI revealed significant disease progression to both tumours and the subsequent biopsy corroborated that. I was now Gleason 8 (3+5) Grade Group 4, involving 20 out of 24 cores. T3a.

I was angry and confused. How had it progressed so quickly whilst I was supposedly being monitored.  I immediately requested copies of all my medical records and discovered that, in my opinion, mistakes had been made, but this is an inappropriate place to discuss them.

Five months later, delayed by two last minute cancellations, I had RARP. Pathology of the prostate revealed extra prostatic extension, Gleason 9 (4+5), fortunately 9 removed lymph nodes were clear. and 9 months later PSA is still undetectable. However, I have been warned there is a 50% chance of recurrence.

During my research, I discovered that T2c disease is a very grey area. NICE guidelines clearly state it is a high risk staging and not suitable for active surveillance.  However, many Trusts seem to introduce their own local protocols to wander from these guidelines.  Manchester for example:

https://gmcancer.org.uk/wp-content/uploads/2021/10/paper-3_gm-active-surveillance-protcol-v7.pdf

I also found several scientific papers stating that a T2c staging, bilateral disease, is the strongest parameter in predicting active surveillance failure. Out performing other factors including the number of cores with cancer, MCI and PSA density.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6480830/#:~:text=The%20finding%20of%20bilateral%20prostate,the%20importance%20of%20confirmatory%20biopsy.

From my experience, I would advice others who elect to take active surveillance to

1.  Take notes or preferably record consultations.

2.  Don't purely rely on PSA results, they are only an indicator as to the extent of your disease.

3. Ensure you get follow up MRIs and DREs.

4. Don't be afraid to ask for a second opinion.

5. Be extra careful if you have a T2c staging.

6. Be a bit wary of "Don't worry. It's such a slow growing cancer" in my case it obviously wasn't.

Adrian.

Edited by member 05 Dec 2023 at 20:19  | Reason: Typos again!

Hello again mate. 

I'll trawl through NICE guidelines and try to put a link to it for you.

Yes they're shifting to Cambridge Prognostic Group (CPG) staging which complicates matters. 

I did email someone to establish what the new CPG staging is for the old T2c . I'll try and locate that too.

I know that NICE NG131 risk stratification with localised prostate cancer state that those at high risk are people with a PSA level greater than 20mg/ml or Gleason 8-10 or a clinical stage equal or greater than T2c and  go onto say because those with T2c are high risk, active surveillance should not be offered.

I've done other research and found scientific papers suggesting that T2c cancer is closer to immediate risk rather than high risk, but NICE risk stratification states its high risk.

I was amazed to see NICE obviously rate a T2c staging as risky as Gleason 8-10 a or a PSA greater than 20.

This would support the paper which stated bilateral diseases is a significant factor in AS failure. I can't see many consultants deeming those with Gleason 8-10 or PSA 20 or over, suitable for AS, but they'll happily recommend it for those with T2c disease.

Edited by member 06 Dec 2023 at 23:47  | Reason: Not specified

I was almost a carbon copy of your case. PSA elevated to 5.6 (July 2019). MRI pirads 4. Biopsy (sept 2019). 3+3 T2C in all four quadrants. Option of active surveillance but I had a gut feeling they were being way too optimistic so took a 2nd opinion an engaged with a leading Surgoen professor in London. He agreed with me and said likely with be upgraded at histology. Retzius sparing rarp+neurosafe (nov 2019). Post op he said it was timely it was done so quick as had I waited wouldn’t have gone well for me as cancer more extensive than scans or biopsy had depicted. Final staging T2c 3+4 N0 MX. Now at year four and still undetectable 🤞 😵‍💫

No worries Adrian, it was very interesting reading your post. I must admit I have scrolled through the NICE site until I am blue in the face, but cant find the reference to T2C being high risk?

In any event, I am informed by the specialist nurses on here, that they (the NHS presumably) have recently moved the goalposts, and no longer use the a b or c staging, just T1,T2,T3 or T4! I will wait and see what this test shows, the reassess my thoughts on staying put on AS or getting something done about treatment.

Thanks.

Ian.

Ian, 

The link I posted from the national prostate cancer audit, the table on page 10, clearly shows that the comparison of the old cancer staging of T2c now equates it to the new CPG category 4 or 5 which still makes it high risk.

I can't put it any other way.

Edited by member 07 Dec 2023 at 19:55  | Reason: Not specified

So far so good. Obviously with Ca things can change at any time. Maybe the odd minor drip or squirt if I lean over the sink on a semi full bladder seems to be the only one or if I try and force wind to forcefully. I’m doing lots of gym work atm body building and no problems there. I just ensure an empty bladder and go half way through a three hour grind.

On the ED side…I had nerve sparing one side so that front has been good. Not quite as erect as pre-op if I’m tired so would supplement a PDE5 inhibitor if needed. If I’m not tired it’s pretty much like before surgery which exceeds expectations.

addendum: randomly 6 months after surgery I had urine retention after taking drinks with caffeine. Triggers it a few times to ensure cause so stopped taking anything with caffeine since and no issues since.

Edited by member 13 Dec 2023 at 17:54  | Reason: Not specified

Hi Adrian

Clear as mud then.

Doesn't really answer your question unless I am missing something?

I got much the same response when I questioned my Urology team. Under the old rules I would have been deemed high risk, but under the new rules I am low risk.

I also came across some info in the PCUK literature which stated that men with more than 5mm of cancer detected in their prostate should not be considered for AS. I had 10mm and 11mm respectively, so I guess this has changed too? 

Edited by member 02 Jan 2024 at 11:03  | Reason: Not specified

I agree it is all very odd that there has been such a change in advice. I think another factor which is not so often commented on is the size of the prostate. There are some research papers that refer to this. A man’s prostate can vary considerably in size and if you have a small prostate say approx 25cc in size the risk of a tumour breaking through the capsule may be higher than a man who has a prostate say 80cc. A 2.5cc tumour is taking up 10% of the prostate in a man with 25cc prostate but only about 3% in a man with a prostate 80cc. I know where the tumour is growing is a factor but given all things were equal.

The other thing is T2C is frequently diagnosed following surgery. My husband’s tumours one side of the prostate were missed by MPMRI and biopsy and only discovered following surgery.

I know you are an advocate for AS and I fully understand why but it is all these variables that make me worry ie the relative frequent upgrading of Gleason score following surgery, the missed tumours not spotted on MPMRI or biopsy therefore under estimating of tumour and even changes in grading following surgery where tumour thought to be confined even sometimes with Gleason 6 has breached the capsule. Obviously AS is the right choice for many men but I think for many the biggest hurdle is the small degree of uncertainty with which you have to live not knowing if your diagnosis is the full picture. I know there is always uncertainty but with the other options I suppose you can think I have thrown the kitchen sink at it. As you have said before though Adrian perhaps my views are skewed by this forum which may not be reflective of how successful the AS approach is for many men.