Dad diagnosed with advanced PC, 'superscan' shows mets in over 75% of bones, nodules in lung too

I'd never heard of a 'Superscan' either but after looking it up its a bone scan where over 75% of the bones have mets. Basically, the entirety of the contrast medium ends up in the bone, and none ever makes it into the kidneys. In a moment of black humour my dad suggested they ought to rename it a 'super f%£*ed scan.'

Yes, I've read some fantastic things about Enzalutamide on this site, but also that it doesn't work for 50% of people. Just keeping everything crossed for a miracle at the moment as everything seems so bleak.

I've done a lot of reading on this site in the past few days and whilst its reassuring to read about the many members who have had 5 or even 10 years, even with bone mets, I can't help feeling that because of his symptoms, he is going to struggle to rally.

I love my dad but know him well and am very skeptical that he will make any of the lifestyle changes required to complement his treatment. He is very much his own man.

Hello Lyn,

Thankyou so much for your response. I have had a look on here at some of Trevor and his wife's fantastic posts. What an amazing couple! It has given me some real hope for the future, although of course I do appreciate that each treatment journey is as individual as the person going through it! 

My dad is a great bloke, although he is as stubborn as a mule and has always lived life very much on his own terms. I really do think that expecting him to make any lifestyle changes is asking too much of him, and to that end have told him that he must do what he feels he can but that I wouldn't be hounding him about it. I really do feel that nagging won't work and could result in us falling out, which I want to avoid for obvious reasons! 

I haven't asked about his liver, although will at the next opportunity. It is so much harder when doing everything via telephone and not meeting HCPs face to face!

To my eye, I do feel he still looks a little yellow, although that could just be the affect of shock on the system and the result of our Northern winter time!

He has been contacted today to book him in for a cytoscopy (or as he calls it 'camera up the old chap'). He's not entirely thrilled at the idea, despite it being under GA. 

I'm guessing they want to check his bladder and bowel to check for tumours there but wouldn't this have evident on the MRI? He hasn't had many waterworks issues, except for getting up to pee a couple of times in the night, and had no stool issues so I'm hoping this is just standard procedure and not a sign they suspect something is there? The consultant did not mention that he would need this procedure at all, so we were quite surprised when the hospital rang to advise him that he needed a pre-op assessment! 

My fear is that he may be too ill to put under GA. His dental health is very poor which would probably make intubation difficult and his lungs aren't great and as I've said, his liver function may not be what it should be. The nurse said he must stop smoking and cannabis use (which he fessed up to!) at least 24 hours before his GA which would probably be the longest he had managed since he was about 14! I am doubtful that he can do this without help, but don't know whether it would be dangerous if he doesn't or whether even to bring it up. 

He has told the nurse that he is fit apart from the cancer, although he still looks bloody awful and he has lied about his general health which is poor (he gets out of breath going to the loo at the moment). I guess its all relative though - he says he feels better as is in less pain due to the Prostap injections and Bicaltumide which he's already started. I'm glad that he has been able to access Enzalutamide as his first line treatment as I'm not sure he would survive chemotherapy as he is at the moment. 

I really do have everything crossed that the Enza will work his magic and he will start to look and feel in better health. 

Also worth noting that cystoscopy doesn’t usually need a GA so worth clarifying with the hospital what exactly they are planning to do at this appointment. The medical staff may need to get your dad’s consent before they can discuss anything with you though.

Thanks Lyn and John,

You're right Lyn, it is just the bladder, not both ends, though we don't have a date for it yet. Seems like they have spotted something on one of his scans blocking one of the Ureters, although he says he has no water-works issues so we won't know until after the scope.

Had a fun few weeks navigating this Brave New Covid Cancer World with my dad. His consultant struggles with the video conferencing technology and also has a bit of a habit of saying the wrong thing which is making everything a bit difficult.

It's so hard when we can't see my dad face to face and can't see his decline like I can. He assured me that it sounds like my dad's cancer is 'getting better' (it is advanced, in over 75% of his bones, and likely lungs, Gleason 9, T4N2M1b) when I asked him what he was basing that on, he said 'I just asked him, and he said he was feeling better' DOH! He definitely isn't going to be getting better unfortunately but if you ever ask any Yorkshireman how they're feeling, they say 'OK' even if they're trapped under a grand piano or being chased by a bear! 

He is starting Enzalutimide this weekend at the highest dose in the hope that we can keep the cancer in check. Dad's consultant seems to be almost agressively optimistic which is actually a bit hard to deal with. HIs PSA has reduced from 6800 to 55 which is great obviously, but I can't help but see the evidence of my own eyes which is that he looks very thin, ill and is really struggling to sit for more than a few minutes at a time. He has so much pain in his bum area and moves like a man 30 years older. He so wants to be improving, he's almost willing it to happen but in truth he actually looks more poorly than he has done so far. 

Oh and the consultant mentioned that his 'bone markers' had increased from 1200 to 5000 in a month, which doesn't sound good, he explained it away with 'but he might just have a fracture' so I really don't know what to make of that.