Query around metastatic advanced prostate cancer

At the end of the day if they refuse or the extra is more than you want to pay just cancel it .

Good luck

Debby

T4N1M1b.

PSA 136

Spread into pelvic lymph nodes with bilateral obturator and left common ilac Lymphadenopathy and also into the bones of C7 vertebra, sacrum, left ilium and left femur.

Please can someone help me understand this.

Hi Corrie,

I typed the big words in Google and chose to search images. I saw things which look like hip bones and spine bones. I'm not sure if some of OH issues are in lymph nodes near those bones rather than the bones themselves. If you do the same you will get some idea of which bits of his body are affected.

I think your earlier question regarding travel insurance needs thinking about; considering Lyn's statement about breaking a metastatic bone. Well if OH broke his hip or thigh and you have excluded PCa then they won't pay out. I don't know how fragile those bones are? 

"it's bad isn't it..." most posters on this forum are perhaps a bit more sensitive than me and couldn't bring themselves to reply to a statement like that. Well yes, it is bad, but your consultant has said it will be boring for a few years. I think you have to take that at face value. We have had people on here for many years occasionally over a decade with diagnosis similar to OH.

I have done this before and used to have private medical insurance in a previous role. HRT for me with a top specialist. Cost £300 and worth every penny. I wasn’t getting very far with GP who wanted to start me on the cheapest option. A couple of times with a skin condition for son and it was definitely worth it.

Husband is happy with his care but would just like a final check. He is open to a trial and honestly is tackling this in a very positive way. As he has NEVER been ill before I always thought he was going to be a complete nightmare.

Shows what I know...

We can fund if required for things not available on the NHS - is there anything I should be watching out for.

With incurable cancer, I can't see any benefit in going private for treatment although paying for a one off consultation as a second opinion is probably worthwhile. But it depends what you mean about the 'best' ones named in the Daily Mail ... if you are referring to the list of best urologists, that isn't much use to you as they are all dealing with men who are still suitable for surgery - you need an oncologist not a urologist. If you are referring to the June 2020 article on emerging treatments and a couple of the oncos quoted there, go for it.

Hi

My dad got prescribed Abiraterone last summer (after hormone injections stopped working) which he took for 3 months, sadly it did very little for him but made him quite ill (or that could have been the cancer spreading. We are in Scotland so slightly different rules to rest of the UK. I think when Abiraterone works it works really well but sadly not for every man.

i don’t think you can get Abiraterone after Enzalutamide if one does not work usually means the other will not work.

If your consultant recently mentioned HT with Enzalutamide then it sounds like it’s on offer to you?

My dad’s HT worked very well for 18 months, some men do well for years on Abiraterone or Enzalutamide.

anne

x

This shouldn't affect you - men can't have abiraterone after enzalutimide has failed anyway. As I think others have said on your other threads, your OH wouldn't normally have been offered enzalutimide at this stage (like abiraterone it is only approved for men after their normal HT has failed) but during the pandemic, normal practice has been suspended because enza is less risky than chemo. 

Hi Lyn I’m interested in your last comment about Chemo only working for about 50% of men. At what stage? Is that not at all? Only for a bit?  Oh finished in October but we were never told that’s there’s a 50/50 chance of it working/not working.