M0 with conventional scanning to M1a with PSMA PET scan

Good morning.

I am sorry about the way your diagnosis is panning out, but you seem to have a realistic outlook, and so I hope that helps.

My own case is slightly different.

The staging in my case was T3b N1 M0. Gleason 9.

The treatment prescribed was:

1. 6 months hormone therapy - Zoladex in my case.
2. Radical radiotherapy to the pelvic area - 74 Greys in 37 fractions.
3. Continued hormone therapy out 3 years from diagnosis.

This is stronger than the "standard" treatment.

There is some evidence, which I can't link to because much of the discussion is outside the UK, that "de-bulking" - i.e. radical treatment of the original tumour - can have a positive effect on on advanced stage cancer.

It sounds as if this might be considered in your case, and if it is I would go for it.

In my case I had a starting PSA of 7, which may be the difference between us.

I have the standard main side effects from the hormone therapy - complete lots of libido, erectile dysfunction, hot flushes, intermittent fatigue. None of these bothered me much, and I am living a pretty normal life.

The radiotherapy simply made the fatigue worse for a couple of months.

I now use the fatigue as an excuse to have a nap (not every day) for no better reason than I enjoy it.

I have adapted, and am having fun nearly all the time (even when I am having a nap).

Onwards and upwards!

Hi - interesting and take your point re the potential manipulation of figures. My OH was delayed treatment ( we live wales!). April 22 had acute retention- gp finally referred July- prostate hard bit bumpy but not overly concerned. PSA 18. Scans etc and private biopsy due to further delay  est. 4months) and confirmed Gleason 7 -bone scan clear-ref to ICHL for surgy( no one competent here) . Further delays and then they wanted PET PSMA scan which showed ‘suspicious’ areas T5 & one rib.. automatically restaged to 4 & denied surgery.. there def is an evident base around the debunking ( removal ) of the primary tumour in oligometastatin spread. Despite numerous arguments we were denied this and triple therapy so had chemo RT and remains on HT for life.

the research does take some finding and I found it using the term oligometastatic if that helps. Unfortunately I no longer have the link but I’m sure you will find it .

wishing you all the very best x

Hello Rocket (Rocket4e316f (ea7d382b7cdf4bfd99442327c86a178b)) 

An interesting post - I am a T3aN0M0 with a "shadow" on my pelvis. Original treatment was 3 years HT and 20 fractions of RT with the pelvic lymph nodes being "zapped" just in case on a "curative pathway".

As I have a biochemical relapse (increasing PSA 27.5!! but no cancer shown on any scan) I am back on HT. We are trying 9/12 months to see how it goes.

I must say having been on the Community for almost 4 years and a Community Champion for over 2 years I have seen many T3aN0M0 cases all with different PSA results treated with different methods. These range from HT/RT through to Chemotherapy. To me the NICE guidelines for treatment are not specific - Consultants fail to give the patients all the warnings about side effects - and they treat them how they see fit. It's noticed each NHS Trust has it's preferred HT medication.

My view is the fence between T3 (Stage 30 and T4 (Stage 4) is very moveable and just sometime I think patients are in the wrong group and given the wrong treatment. Don't forget this is a personal opinion as I am not medically trained.

Best wishes - Brian.

Many thanks Hanandy. I’m also in Wales though they moved things along pretty well and I was just over the 62-day target. There is interesting work on oligometastatic disease going on, by the looks of it, and I think it’s important to keep these kinds of distinctions in mind. I was watching a pcri YouTube video a while back and the point was made there that stage 4 is a very broad category with such a range of conditions and potential outcomes that, especially with the advent of PSMA PET scans, individualised treatment is both important and achievable. In my ignorance at this stage, I simply don’t know how far that view has been adopted by oncologists here. But it’s definitely I want to ask.

Many thanks Brian. I have been following your posts and profile since day 1 on here and have found both very helpful, not least as we are only three or so apart in initial psa score (you win In that round of PCa top trumps, I think ). I wish you well with the ongoing scrap with the bcr and will report back once I’ve met with the oncologist. But I share your take on this. 

Thanks Steve. Really helpful as ever. Yours and Hanandy’s point re debulking is also one I’ll explore. I’ve also been on HT for less than 24 hours but no side effects yet! I imagine they are on the way….

Ohhh yes....

"It's noticed each NHS Trust has it's preferred HT medication."

That's an interesting point you raise there.

After my diagnosis my hospital gave my GP a list of LHRH agonists to put me on. There were 3 "medicines" identified, 5 "brand" names, and an assortment of periodicities ( in weeks and in months !) from 4 wks out to 6 months.

Is this the standard way of doing it ? What exactly is the difference between Prostap (leuprorelin) and Zoladex (goserelin) ? Why does not the Oncologist specifically prescribe the required medication ? Why leave it to the GP............or perhaps even a bean-counter in the surgery back office ?

To be ultra simplistic - is it rather like saying take Aspirin, Ibuprofen or Paracetamol if you have a headache ?

My case may be slightly different as my hospital and GP are in different NHS Trusts (my choice). Would be interested to hear of other people's experiences in their HT prescription.

"There is also the interesting consequence that some patients with low volume spread are being migrated into stage 4, with possible consequences for data on survival outcomes in both stage 3 and 4 - effectively improving the stats for both stages (removing more high risk patients from stage 3 but adding the same, relatively lower risk, patients into stage 4). Has anyone done any reading or gathered any thoughts on this as I’d like an informed chat with the oncologist when I meet her or him in a few days? "

This is known as the Will Rodgers effect  - see cancer migration in the wiki link below.
Basically when you move patients around, you get better overall outcomes in both groups (ie higher  percent cures in the "curable" group and also those moved into the Stage 4 pot raise the overall outcomes in that group because they have less serious disease
eg they'll live longer etc. So it's  statistical outcome improvement on paper but not in reality for most individual  patients as those who were curable remained so and those not, were mostly never going to be curable. But initial staging and the treatment plan should be done carefully so as not to deprive anyone of  a possible cure and as mentioned the so called oligometastatic patients with limited spots might still be curable with a modern PSMA scan targeted approach which is relatively recent.

en.wikipedia.org/.../Will_Rogers_phenomenon

Thanks Patrick. I was trying to remember the term for it. I agree with your last point as well, of course. You would hope that, with PSMA PET scans, treatment will be more individualised and not general and systemic. Good news on your PET scan!