I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Helping my dad

User
Posted 17 Nov 2018 at 18:04

Hello all


I am hoping for a bit of discussion about my dad's situation as he is newly diagnosed but awaiting results and I don't want to keep bombarding him with questions .I also think he might not want to know certain things but I.would like to be aware of the situation so I can make suggestions when appropriate. 


A routine Psa test then subsequent manual examination of the prostate has seen my father immediately prescribed hormones and told cancer . this is before any scans or biopsy results have Come in. He has opted for Degaralix which he is paying for. He has been told they won't operate  


He has no symptoms other than longer to pee. 


The decision to not operate--could this mean locally advanced or likely worse? How can they diagnose without biopsy results? Is there any way it could be benign or would they certainly not have started hormone therapy? Could he be advanced and spread with no symptoms or pain?


Abu ideas or discussion grwatfuly received!! I know we will find out more in a couple of weeks but I would love to discuss this now.  


Thanks!! 


 

User
Posted 17 Nov 2018 at 21:20

If they have put him straight onto hormones without waiting for diagnostic tests then I think you can assume that a) his PSA was so high that it couldn’t be anything else but cancer or b) they could feel the cancer when they did the digital rectal examination or c) both. If surgery is not an option then it is either locally advanced or advanced. Do you know what the PSA reading was?


Yes it could have spread without symptoms. Once all the test results are back you will have a clearer picture but they would not have started him on HT if there was any chance of it being benign. 


Is your dad in the UK or overseas? Very unusual to be paying for degarelix if he is in the UK.

Edited by member 17 Nov 2018 at 21:23  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Nov 2018 at 21:43

Thanks so much for your reply. He is in the UK.  He has private health insurance but this does not cover medications hence paying for it. Could this be why? He won't tell me the Psa as when I asked I don't think he wanted to worry me but having read about the Degeralix being suggested for advanced cancer and the fact he has been put on it just from Psa and prostate exam and from your message I guess we just have to wait to see if locally advanced or advanced. Can't believe we are on this journey it's totally out of the blue!! My mum still thinks it much be a mistake and just enlarged as his father had. 

User
Posted 17 Nov 2018 at 22:10
Ridiculous to be paying for hormone treatment - it is available in the UK on the NHS without restriction.

If he was my dad, I would be asking him some direct questions like “how high was the PSA” just to make sure that he isn’t being taken advantage of by someone unscrupulous.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Nov 2018 at 22:17

I don't blame you wanting to discuss this now, it's a shock.  There are quite a few things to think about that might not be so cut and dried.  For example.


They might not operate because of your fathers health, weight or age.  The operation is physically taxing as they tilt the body.  They didn't rule out Radiotherapy or perhaps didn't say?  Radiotherapy can be regarded as a cure as much as an operation and it's standard to offer hormones beforehand.  That could be better news, if so.


A private hospital presumably doesn't follow NICE guidelines so using non-standard treatment by immediately prescribing hormones might be not be unusual.  We don't know if the consultant you saw was a surgeon, a urologist or an oncologist or perhaps a GP.   Different specialities can favour different pathways, although they shouldn't make definitive statements like no operation without evidence.  At least I wouldn't have thought so.


There are quite a few questions that could be asked and you might have some of the answers e.g. about his health for the operation, before any conclusions are drawn and perhaps someone else on here can suggest some other thoughts.


All the best, Peter

User
Posted 17 Nov 2018 at 22:48

Hey Lyn.thats really helpful I'll find out what's going on with this as they are worried they winr be able to afford the treatment each month! 

User
Posted 17 Nov 2018 at 22:54

Hey Peter thanks so much for your reply and I hope that the scans show no dangerous spreading which might mean that radiotherapy could work longer term. The wait is hard but in some ways ignorence is bliss! I got scared when reading about Degeralix as seemed only for very advanced cancer. 

User
Posted 17 Nov 2018 at 23:17
Degarelix is used when they need to get the testosterone level down quickly - outside of a trial, it isn’t used with radiotherapy.

There may be bits of the story that you don’t know but in any case, there should be no earthly reason why he would have to pay for the degarelix :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
Forum Jump  
©2019 Prostate Cancer UK