Treatment no longer recommended

User

Posted 16 Feb 2025 at 20:00

Hi everyone,

My Dad (80) was diagnosed in August this year with a PSA count of 5,000+. He'd had prostate cancer about 15 years ago and was (initially successfully) treated with radiotherapy & zoladex. The cancer has metastasied through his bones now with lesion type growths.

He was placed on Degerelix which initially brought his PSA down to around 600. However, this was short lived, and it has started rising again with his latest blood test showing over 2,000.

While I didn't see the first bone scan, the consultant oncologist did show us his second (and latest). The lesions are pretty much everywhere now and, crucially, after the first scan they said there was no evidence of growth in his spine. Unfortunately, his second scan showed his entire spine was lit up like a lamp.

Later this week we have the follow up from the previous oncologist appointment where they gave him three options. Firstly, chemo, that they recommended he didn't do because he isn't strong enough. Secondly was enzalutamide, which they also recommended he didn't start because his testosterone levels are already incredibly low. The third option, which they recommended, was palliative care.

He is considering whether to give enzalutamide a go as I don't think he wants to try chemo; he has prexisting health conditions that wouldn't gel well with it. The consultant said they were "very pessismistic" about it doing anything for him.

While we understand that, short of a miracle, this is now a terminal diagnosis, we've not been able to get any sort of timescale for him. The closest we came was the consultant speaking in generalities about "otherwise healthy" patients, and "a few long months or a short few years", but they were very clear they weren't speaking about him specifically.

So, my general query to you lovely people is: does anyone have experience or insight into his potential prognosis when treatment is no longer recommended? I appreciate that is a very emotionally loaded question, and I do apologise for that... however we're just trying to get things organised and in order and it's proving difficult. I'm in the process of moving home to be closer to him, as well as in the process of moving him to a better location, but the lack of timescale is making him a tad resistant at times because he (understandably) "doesn't want the hassle of moving if I'm gone in a week".

Thank you so much in advance and for all those that got this far, thank you for letting me chat into the void.

User

Posted 16 Feb 2025 at 22:19

It's always difficult to suggest what someone else should do. I don't know his condition, so all I can really do is to try and imagine myself in that situation, which is impossible of course.

Enzalutamide has 3 modes of action, two of which might still work even if the androgen receptors are managing to trigger themselves in the absence of Testosterone. So it might be worth a go, and he can always stop if he doesn't get on with Enzalutamide. Unfortunately, his cancer may be able to quickly mutate to get around the Enzalutamide, but I still don't see that as a reason not to try it.

User

Posted 17 Feb 2025 at 03:35

I agree with Andy that Dad could give Enzlutamide a try. Even Oncologists often find it difficult to give a timescale as would be helpful to you because some men manage to keep going surprisingly long whilst others surcome quite quickly at the sort of stage he is at. Much will depend on his general health and how he is affected by the toll the advancing cancer places on his body.

Barry

User

Posted 17 Feb 2025 at 09:04

I'm sorry to hear your situation,I am a member of the Incurables and everybody has different journeys to travel,I am no doctor but surely trying Enzalutamide should be an option,if your dad is monitored while taking with regular tests he may react well or not so well but it's got to be worth exploring.

Wishing you all the best Phil

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User

Posted 16 Feb 2025 at 22:19

It's always difficult to suggest what someone else should do. I don't know his condition, so all I can really do is to try and imagine myself in that situation, which is impossible of course.

User

Posted 17 Feb 2025 at 03:35

Barry

User

Posted 17 Feb 2025 at 09:04

Wishing you all the best Phil

User

Posted 17 Feb 2025 at 17:13

Thanks so much everyone, I really appreciate your input. :-) Some really helpful food for thought there that I'll feed back to him and we'll see what he wants to do. :-) Thank you again

User

Posted 17 Feb 2025 at 19:59

I’m sorry I can’t offer any advice, but would like to wish your dad all the best whatever he decides to do, and he is indeed lucky to have a son like you to fight his corner.

Good luck,

Derek

User

Posted 17 Feb 2025 at 21:46

Hi Moustache Man.

I'm sorry to about your dad's condition, but it's great that you care enough about him to post on here.

My dad was diagnosed with PCa when he was 79 years old. Ashamedly, unlike yourself, I did not go out of my way to establish his exact condition. He was a very private man but said that he'd been informed that he was too old and frail for any radical treatment. He said they were going to try and control the cancer by giving him regular drug injections in his abdomen and keep checking his blood. I'm still unaware of what drug he was having.

For the next 8/9 years he didn't seem to fazed by the disease. He remained at home with my mum and coped well.

However, sadly, about a couple of months before he died, his condition quickly deteriorated. I took him to his GP who informed me that his PSA was in the thousands and I took him to hospital for a scan. His pelvis, lower back, and legs lit up like a light bulb.

During his final weeks Mum found him difficult to care for him. I contacted MacMillan nurses who visited him at home. They were brilliant. I also involved Social Services who sent carers to give him bed baths. I moved in temporarily, to help out. Despite our best efforts, he quickly became weaker and we could no longer get him to eat or drink.

Although he wanted to die at home, it was all becoming too distressing for mum, seeing him fade away. I felt I had to make arrangements to move him to a nursing home for specialist palliative care. Mum and I were actually waiting for them to transport from the house, when he passed away. He'd got what he'd wanted. He'd died peacefully at home, in his own bed, surrounded by his loved ones.

I know this doesn't really help you with your dad's time scales, but I felt obliged to warn you, that in my dad's case, things developed very quickly.

I can fully empathise with what you are going through, mate, and send you and your dad big hugs. I hope you have much longer together than me and my dad were allowed.

Best of luck to you both.

Edited by member 17 Feb 2025 at 23:34 | Reason: Typo

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