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.

I read all that stuff Adrian, and cannot for the life of me figure out how what is classed as high risk under the old NICE guidelines, can suddenly become low risk under the new CPG rules!

The old rules were pretty clear that bilateral disease was T2C, which was high risk (as you rightly pointed out). How that has now become group 1 is beyond me. I have left a message for the specialist nurse team from my hospital to call me back, as I want to check that somebody hasn't missed the bilateral bit, and is just going on the now reduced Gleason score plus PSA level.

Thanks for your help.

Ian.

Yet another reet rivetin' read.

Best practice in active surveillance with prostate cancer: a Prostate Cancer UK consensus

https://bjui-journals.onlinelibrary.wiley.com/doi/full/10.1111/bju.14707

Morning all,

I've just received a reply from NICE, to this enquiry I sent to them:

In 2020, I had an MRI and a small lesion was spotted on my right prostate lobe. PI RADS 3 Radiological staging T2a. The ensuing TRUS biopsy revealed another tumour on the left lobe.Gleason 6 (3+3). Am I correct, although at this time the tumours were low volume and low grade, because they were found in both lobes, my cancer staging was T2c.  

At this time your (NG131) guidelines T2c disease was deemed high risk and not suitable for active surveillance.

Amendments were made to these guidelines and when I next checked them, this year, the TNM risk stratification had changed to CPG categories.

I believe that the new staging has done away with the old T2a,T2b and T2c and they are all now T2, cancer that's confined to the prostate.

This has confused me because it appears that your guidelines under CPG now deem active surveillance a suitable treatment offer for the 'old ' T2c staging. 

 https://prostatecanceruk.org/get-involved/campaigning/concerns-about-the-quality-of-your-healthcare#:~:text=You%20can%20make%20a%20complaint,be%20found%20on%20their%20website.

I contacted Cancer Research UK to clarify a comparison between the old TNM three tier risk stratification to CPG's and they sent me this link https://www.npca.org.uk/content/uploads/2021/02/NPCA-Short-Report-2021_Using-the-CPG-in-the-NPCA_Final-11.02.21.pdf

The table on page 10 states that T2c are comparable CPG 4 or 5 which aren't deemed suitable for active surveillance.

I am completely confused.

It seems to me in 2019 you were saying T2c was not suitable for active surveillance but now under CPG it is.

Could you please clarify this for me.

Many thanks

Adrian

Their reply was:

Dear Adrian,

Thank you for contacting the National Institute for Heath and Care Excellence (NICE) regarding our guideline Prostate cancer: diagnosis and management (NG131).

I have sent your query through to Consultant Clinical Adviser who worked on the guideline and he has advised:

The enquirer is correct that the old T2c category no longer exists in the most recent AJCC TNM staging system (version8). As such, if their radiology and biopsy were done today, the cancer stage would be T2 and other features including Gleason and PSA would be used to help determine CPG and provide guidance about treatment options including surveillance. One of the intentions of the change to CPG in NG131 in 2021 was to help reduce potential ‘over-treatment’ and better categorise people deemed at ‘lower-risk’ so that surveillance could be considered as an option. In NG131, recommendation 1.3.7, Box 2 explains about the potential benefits and risks for prostatectomy, radiotherapy or surveillance. If, the enquirer met all the criteria for CPG1 then surveillance would now be offered with other treatments considered. If they were CPG2 then all of the options are considered as a choice (rec 1.3.8 and 1.3.9).

We would advise that you discuss this further with your clinician about these changes in classification as they are complex.

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. Our recommendations do not replace the professional expertise and clinical judgement of health professionals, and treatment and care should always take into account individual needs and preferences. Patients and carers should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals.

Responsibility for decisions on the most appropriate treatment stays with individual clinicians. NICE guidelines are a practical tool to be used in conjunction with and not as a substitute for clinical judgement.

I hope this information is useful for you.

Kind regards

Edited by member 02 Jan 2024 at 11:21  | Reason: Not specified