Diagnosis timelines

Hi Neil and welcome 

Yes it has taken a while although your stats seem fairly low so probably non urgent.

Two things though 

What does the MRI report say and what is the Gleeson score from the biopsy.

One more thing, you are going to see a surgeon who will presumably push for surgery, u need to talk about Radiotherapy as well.

Best wishes 

Steve

Hi Grundo 

I have asked for a Radiotherapy appointment as well.

MRI and Biopsy results below:

Prostate volume: 16.6 cc (relatively small prostate).
PSA density: 0.58 ng/ml/cc (high).
Main lesion:
Right posterior mid gland.
Approximately 1.2 × 1.4 cm.
Initially reported as PI-RADS 4.
Second lesion:
Right base posterior region.
Approximately 0.9 cm.
PI-RADS 4.
No definite extracapsular extension seen.
MRI stage: T2c N0 Mx.
MDT Review

Main lesion upgraded from PI-RADS 4 to PI-RADS 5 due to its appearance and PSA density.

Histology Results

Diagnosis: Prostate adenocarcinoma
Gleason score: 3+4 = 7
Grade Group: 2
All 4/4 biopsy cores positive
Cancer involvement: 70% of sampled tissue
Maximum tumour length: 15 mm
Cribriform pattern present
MDT Staging

Clinical stage: T2c N0 Mx
Risk group: CPG2 (Cambridge Prognostic Group 2)

Good morning Neil101 

Welcome, but sorry to find you here.

This is a good group to belong to, for information nd discussion.

You are right about the timeline, and it does appear to have exceeded government guidelines.

My own journey was 61 days, just inside the timeline.

There is a difference between hospitals of course, but there is also a difference between cancers.

Generally Prostate Cancer is a slow moving disease. You have a low/medium risk version, so doubly so. In my case I had a high risk version, so things moved more quickly.

Other cancers, for example pancreatic cancer, are really difficult to treat and kill in months.

Since I had this illness I now think that all cancers need to be treated differently, in the same way that response to treatment can be individually.

For example, I have also encountered Basal Cell Carcinoma, which is very slow growing skin cancer that almost never moves, and you tend to have to ignore it for decades to die of it.

That has the same time limits as Prostate Cancer and Pancreatic Cancer, which, to me, is a little odd.

In your case the diagnostic process seems to have fallen outside the apparently arbitrary time limit. To set against that the information suggested that your doctors will place you on a curative pathway which is quite likely to be successful.

i have decided that I am not sure of the value of the time limits.

Hi Neil 

Ok, so doesn't look too bad, probably any cancer is still within the prostate capsule.

Gleeson ok, not particularly aggressive.

I think you just need to look at the two main treatments , RT and surgery, and decide which one you want.

Hopefully will become clearer after your next meeting.

Best wishes 

Steve 

Yes, it's slow. Looking back at my own timeline, it was 5 months from referral to 'treatment'. Just telling me the (positive) biopsy results involved a wait of over 6 weeks. It was so long, I was convinced it must be a negative result.

However, as others have said, in general, time is less important in the treatment of prostate cancer than many other cancers. This is especially true if your PSA is <10,your MRI is graded 3 or 4 (out of 5) with only localised prostate-encapsulated abnormality, and you are diagnosed with a Gleason 6/7 tumour. For such tumours, you can often wait for a number of years before doing anything in any case. I suspect that in reality, the NHS goes slightly slower on prostate cancers that fall into these criteria so they can hurry along the more urgent ones.

I would also note that patient decision-making is hard in prostate cancer, with a wide range of choices with significant implications. Sometimes it is better to have a little time to make the right choice rather than rushing into something you may regret. This is somewhat tensioned against the NHS timeline.

Of course,this does not help with the mental stress of going through a cancer diagnosis as an individual patient - I know I found it a very stressful period with all the waiting. Once you get onto a treatment path, it feels a lot better.

I was told it could be another 10 to 12 weeks before I can see an oncologist. Because of this, I’ve decided it might be better to explore the private route. I figure paying for a consultation is a better option than spending the whole summer worrying while I wait.

Hello Neil (Neil101 ) 

I have been following this thread but this is my first post.

Whilst you are a T2 with a fairly low Gleason Score - there's no excuse for delays in the NHS - They have a timeline sadly they can't stick to it.

I can't fault you looking at taking the private route especially if you have private medical insurance, however be aware:

* Once you take the private route - it can be difficult to re-enter the NHS system at the same stage you left it.

* Not all private medical insurance will cover prostate medication and/or surgery depending on what you need.

Our Raising your voice toolkit may be of help.

Personally I would contact the hospital PALS Office (Patient Advice and Liaison Service) Tell them you have cancer and the delay in your appointments and treatment is causing anxiety. If they can't help then it's a formal complaint.

I would also contact oncology and tell them you are more than happy to accept any short notice cancellation they have.

I hope the above helps - do let us know how you get on.

Best wishes - Brian.

Hi Millibob 

At 168 days into this journey, and facing the prospect of up to another 84 days just to see oncology before treatment even begins, I believe this is the only option to avoid unnecessary delays and anxiety.

Although I don't have insurance and will be dipping into my savings, I believe this is a wise investment. I received a referral letter from my GP today and have already approached a local private healthcare provider in Northern Ireland.

Hello Neil (Neil101 ) 

Whilst I can understand the route you have taken i am sorry that the NHS has failed you at your time of need.

I have a friend who died from Prostate Cancer who lived in Norther Ireland and yours isn't the first I have come across from that part of the UK with serious delays.

I think in your case - regardless of you leaving the NHS system I would be writing a very strong letter to these two "gentlemen"

Interim-permanent-secretary-appointment.

Mike Nesbitt and Mike Farrer.

The more people who raise their voice the sooner things will improve.

Do still please let us know how you get on.

Best wishes - Brian.

Rest assured I will keep you and the rest of us PCa warriors updated on my journey.