Dad has been left hanging

Peggles - don't stop posting. We all react to posts in different ways and as you rightly point out, it is the range of views that ensures balance. If only a few people responded, the forum would quickly develop an unconscious bias. That's the main reason I refuse to engage with the private message function. 

It was my oncologist who said they would not start HT until my PSA hit the 20’s. I had asked after having Adjuvant RT. The reason she gave was to avoid the toxicity for as long as possible. As I have said above if I have a recurrence and I am given this same advice I will question the decision. If I don’t get a satisfactory answer I will seek a 2nd opinion.

I apologise for the above “spat” but I was just pointing out how important it can be to query decisions others are making about our health

Take care

Bri

They probably haven’t started HT as they probably don’t want it to mask anything ie so they can see if there is anything on the scan. But the waiting and delays are appalling. I think you are justified in complaining. But as Lyn says seeing an oncologist is probably the next step

Good luck

Bri 

Edited by member 01 Feb 2019 at 23:31  | Reason: Not specified

I am also surprised that Dad's case has not been handed over to an oncologist because it seems to me that the surgeon has played his part and his interest is now mainly academic unless he considers going back in and removing lymph nodes for example..

Clearly, either the surgeon or oncologist would benefit from good quality scans in order to direct treatment more precisely but the wait for a PSMA scan has to be set against detail that could be obtained from a lesser but more quickly and readily available scan..

Unless the situation has changed radically in the last few months, I believe there are only about 6 centres in the UK doing PSMA and all of these are in the London area. Consultant's now know about this with the result that not only do those scanners serve their local area but men are being referred from all over the country, and the latter mostly as paying patients. The problem is compounded when there is a problem where the shared generator for the tracer breaks down (as happened in my case) so that all the London Hospitals were affected until the machine was fixed. So another reason for backlog and delay. With the Choline scan where the hospitals have to by in the tracer there has also been problems as a number of us have experienced and this too can lead to delays.

The going rate for a PSMA scan privately is about £2600 and a patient needs to be referred by a Consultant, not just a GP. Dad, (or you), could ring round to check costs and waiting times as a possibility, as your present surgeon could refer and 'call over' the scan. The Choline scan I believe is less expensive and available at rather more hospitals and further afield.

I would seek an urgent appointment with an Oncologist,

They offer G-68 scans on the NHS at the Royal Marsden in London and Surrey, but only if you live in its catchment area. Postcode lottery again.

The point of these scans is to pinpoint any metastases so that they can be more accurately treated with targeted radiotherapy, rather than blasting the whole area willy-nilly.

Cheers, John.

The PSMA capacity is really new so the medics are bound to be excited about trying it out but that should not be at your dad's expense.

I can't see any PSA history in your profile? Is it really still 8.9 6 months post op?? That would be a massive + margin so it's more likely to be systemic spread.

You really need to ask what benefit your dad will get having the psma scan and if it will help him achieve a durable remission. Time for a second opinion with an oncologist?

I cant see how i was being harsh. I think that the medics decisions and actions or lack of should be questioned which is all i was saying. I would ask why hadnt HT been started. They may give a valid reason and they may not. If I was not happy with an answer I would seek a 2nd opinion. I think its a tad irresponsible to advise someone to demand medical intervention when we have no idea what the rationale is. 

Im not sure what this has to do with my personal situation and for the record I’m not stressed about it and certainly dont think or expect the oncol to act. I've already said i expect another test in 3 months. I would not insist on treatment if it was not offered but i would seriously question every decision as i have always done. I may ask for scans but who wouldn't. You have figured me out wrong on this occasion Lyn 

Bri

Edited by member 03 Feb 2019 at 12:14  | Reason: Not specified

My onco elected not to give me HT prior or concurrent with SRT because he felt the increased toxicity that HT can cause would have an effect on my existing stricture and further planned surgery. On reoccurrence my PSA only rose to around 0.27 and it was assumed to be in the prostate bed.

Thanks Chris

Edited by moderator 11 Feb 2019 at 00:43  | Reason: Not specified

NICE defines 0.2 as the point at which adjuvant or salvage treatment should commence in post-op recurrence.

For men that have had surgery and RT, some oncos would delay permanent HT until 5 or 10 - Bri's onco and one other on here have stated 20 ( in their soecific cases). This is because HT has a limited life span so the earlier it starts, the sooner it will stop working.

The 5, 10 or 20 benchmark is not relevant to your dad.

Thank you everyone for all your advice and support. 

Before I could call today the hospital contacted Dad with an appointment for tomorrow for a scan. He didn't say what he was having but it takes quite a few hours all in. 

I will keep you all updated with his journey.

Lots of Love and positive thoughts to you all

Suzi xx