Advice needed - Stage 4

To be honest, I wouldn't waste time waiting for the PSMA scan if it was my dad; the main benefit of PSMA is to identify tiny clusters of cancer when there has been a recurrence after radical treatment, which simply does not apply to your dad.

How soon could they start the chemo? If he has been castrated, the hormone I presume he is on will be enzalutimide, abiraterone or bicalutimide? If abi or enza fail he won't have many other options but if he is currently on bicalutimde there is still abi or enza in the bag. Chemo can make the hormone treatments more effective.

Hi Lyneyre

Thanks for the reply, Dad only had one testicle removed back in March as first thought was testicular cancer and I have the consultants letter that at that time the prostate felt ok then after further investigation he was diagnosed with prostate cancer in May then he started the hormone therapy but has only had the one type as far as I am aware apologies I will find out which one it is.

We are just so shocked about the whole 3 months prognosis with no treatment when a) it hasn’t spread to bones or lymph nodes b) Dad feels the same as he always does, I’ve also been reading other men’s stories and with higher PSA levels than my Dads and are still with us 5 years plus it just doesn’t make any sense to me, has the Doctor got it wrong I know  they can’t play god but anyone I have spoken to since that has a medical background seems to think that’s awfully harsh of him to say that, I spoke to one of the lovely specialist nurses and she was also bemused that the doctor had said that as there are other options way before it’s his time :( 

thanks for the advice about the PSMA scan, DR did say by looking at the MRI it hasn’t spread so he wanted the PSMA scan to be sure so I did think that was strange he wanted him to have this scan.

his treatment was supposed to start in 3-4 weeks and that was just over 2 weeks ago we saw the consultant but he is still waiting for the PSMA, the consultants secretary got back to me yesterday and advised DR wasn’t happy Dad is having to wait so long and she has got onto the scanner centre now too so fingers crossed we may hear something next week then Dads treatment can start the following week they mentioned Taxitere (unsure of spelling) or Platinum chemo. 

He started the hormone injections in May then had another injection in August, August appt went well with Consultant as PSA had come down and the proposed treatment plan was radiotherapy but as PSA has now increased he wants to go down the chemo route, mum asked the consultant was there another type of hormone treatment Dad could have before chemo and he said no which we were confused as we know there are other types, just had a look at the notes from the last meeting and Dr advised PSMA for re-staging. 

The appointment was very rushed and uninformative I have emailed the consultants secretary and asked to speak to him again to go through some unanswered questions even if it has to be on a private basis so we get longer.

Thank you for your advice. 

Thanks Lyn

I have just been through all of letters and it only states prostate carcinoma clinically T4 N0 288cc gland PSA density 0.4 it was the cancer nurse that told Dad it was Ductal but strange it doesn’t say that on any of the notes.

I am hoping to speak with the onco next week so I will ask all the questions.

Maybe the nurse made a mistake - that would make more sense of his PSA. I think I would ask whether they now consider the cancer to be castrate resistant and whether they are going to add abiraterone or enzalutimide. If not, why not? 

When you say your dad has "other health issues" what do you mean? If they are advising that chemo could be too risky it could be these other health issues that are ruling out other treatments as well. If he has heart problems that could be making them reluctant to give Enzo or ABI.