Dad just been diagnosed

Best wishes,

Chris

Yes I understand that totally, thanks for your input

I think you need to ask for further information. Get the Gleason score and his TNM score.

I would want to know what the treatable but not cured means aswell. Are they expecting him to stay on hormone treatment for life? 

My husband was diagnosed advanced, we got a second opinion which changed it to locally advanced, it was in one lymph node. (All info on my profile) He had HT for 6 months and had operation. His psa is now undetectable and he’s not had any HT for 12 months and his testosterone is up to 10. I know we can never say he is cured and further treatment was always expected….but who knows, we’re just praying things stay this good. Everyone’s situation is different but there is always hope. 

Nick, the test results indicate his PCa can be treated with curable intent. There is no evidence of lymph node involvement  (N0) and no evidence of bone mets (M0). Certainly the HT/RT treatment that has been planned is for a curable trajectory. 

It’s certainly not my intention to give anyone false hope, but after what we went through I think it’s important to question. 
Not sure how old dad is but we felt my husband at 73 was almost written off. Lots of decisions made about his future without us ever having a single appointment with a consultant!

I realise these consultants do incredible work and I am completely in awe, but I guess like every profession you get different attitudes. Some I find are set in their ways and happy to do what has always been done and others are more innovative and want to keep pushing boundaries as to what can be achieved….we were lucky enough in the end to find the latter.

The difference in mindset for Rob between incurable and curable intent was immeasurable. So even if the original prognosis was right (hopefully not), I know he’s in a much happier place believing in a better outcome. 

A really good point Lyn has made about the CPG3 and T3b, definitely worth getting that explained a bit more. 

Really wishing your dad all the very best Nick.

Does anyone know why he is having a liver function blood test in 3 weeks time

It is probably a routine test because of the Cryproterone he is taking 

Hi All,

Just a little update and some confusion so any help would be greatful, if you read above a few months ago my Dad was diagnosed and these were his results on paper;

Gleason score 3+4 in 7 cores. Stage T3b in right side. N0 M0 CPG 3 WO 2 PSA 16.

He started hormone therapy straight away and radiation 3months after. He went yesterday to the oncology appt to discuss his radiotherapy and she said she looked at his bone scan and there is a really small lesion in his rib. She doesn't know whether it is secondary bone mestatsis or not? His treatment will still remain the same either way.

Why only now has he been told this, how many other consultants would have looked at it? Should chemo now be offered?

We were originally obviously shocked but found a positive in the results that it was T3b and no bone or lymph node involvment. He hasn't had any more scans so is it just a case that a more senior consultant happened to pick it up? 

Thanks,

Nick

Not at this point, usually. Let's imagine that your dad had been diagnosed with multiple bone mets all those months ago ...

1. the standard treatment route until fairly recently would have been HT until it stopped working and then chemo at the end of life stage to try to extend life a little. Chemo doesn't kill prostate cancer

2. more recently, chemo would have been offered at diagnosis because it is believed it can make the HT last longer - but lifelong HT is still the only treatment plan

3. just as the pandemic started, NICE allowed men to have a new generation HT with the standard HT - this was because they wanted to minimise the number of patients going to hospital for chemo and then dying of Covid. The new generation HTs are still only offering lifelong HT

4. Very recently, there has been much excitement about research that suggests men with bone mets might benefit from having the prostate removed or blasted - potentially makes the HT last much longer than the other options. Exciting development but as rare as hens teeth - many men simply can't find a hospital or onco willing to do it.

In effect, if this onco is right and your dad does have bone mets, he has accidentally got into group 4, the best place to be.

It would be madness to put him through chemo or double HT (both of which have some pretty serious side effects) if they are not even sure it is a met. The only way of finding out will be to wait and see what his PSA does when the HT is out of his system.

Edited by member 20 Feb 2023 at 00:58  | Reason: Not specified

For how long is he due to have HT?