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User
Posted 03 Feb 2020 at 14:29

My father-in-law had difficulty urinating so my wife and I took him to A&E last year. They kept him in hospital and sorted out his prostatitis with the TURP operation.


At a follow-up appointment with the surgeon and a consultant oncologist, the surgeon was running through the blood tests and explaining the operation etc and simply mentioned in passing "Of course, you have been told it is cancerous." My FIL didn't really pick up on what was being said but my wife started to cry. The surgeon was talking in a constant stream so I had to be forceful to butt in to ask him if he had just used the word 'cancerous'. (This is not criticism - I know how brilliant these medical people are  - I am seeking clarity on what we ought to have expected).


Roll forward a year - FIL has been on Bicalutamide to try to lower his PSA and Prostap injections once every three months. His PSA is being checked 3 monthly too. PSA started to come down then before Xmas going up again. It passed 200 & now passed 300.


The next oncologist appointment was not till today. Since FIL is 84 he wasn't suitable for chemo last year. Our hope was once he PSA was down he would start radiation to treat the PC. We were expecting consultant today to say that they would have to try something stronger to get PDA down.


Instead she says he can stop taking the Bicalutamide since PSA not coming down and they won't give radiation treatment since he is in the terminal phase and then she tells us she can fast-track getting him into a nursing home since he has about 3 months left.


Is this the normal method for breaking news to people or is this pretty poor (again - I am not criticising - I am well aware of how busy they are and how much they achieve) communication? It feels like they know stuff about how far it's spread that they have not shared (we saw his blood tests flagged up something about his liver for instance but she didn't even mention that). Are there protocols about whether or not to tell a patient's carers certain info that might affect their ability to continue caring?


I just imagined (this is my first contact with this area) everything would be extremely sensitively managed and organised and a clear picture of the alternative roads ahead mapped out for us. Instead we are trying to reset our heads which are reeling from the handgrenade-style revelations lobbed at us.


And something else I feel rather worried about - they are at this moment trying to find a bed for him to stay a few nights at the hospital for an unrelated infection - but they just told my wife (she texted me a few minutes ago) - that they will not resuscitate him if he dies while in hospital. We went to the appointment today expecting to be told about new ideas to treat him and now they are implying he might die this week.


 


 


 

User
Posted 03 Feb 2020 at 16:10

Your experience of consultant bedside manor would seem to be particularly poor.


A PSA of 200 and rising while on HT would indicate it's spread beyond being curable. That might have been the case when it was discovered - can't tell from what you've said, but RT would only have been offered if it was sufficiently contained to be curable, 3-6 months after starting on HT. It sounds like the Prostap only worked for about 9 months, which might suggest the cancer is very aggressive. The reference to liver might be liver metastases, which is a common place for prostate cancer to go. To be rather blunt (sorry), if it's going to kill you, liver failure is probably the least worse option. CPR on an 80+ year old who's been on HT is simply going to result in all ribs smashed (and it does to a lesser extent for a healthy younger person).


It sounds like some key communication didn't happen. Could they have told your father, thinking he understood and would have shared it with you? Has your father given permission for his medical issues to be discussed with you? If so, they mustn't hide anything from you if you ask, just like they mustn't hide anything from the patient if they ask).


You might want to look at hospice care too.


Sorry for the predicament you find yourselves in.

User
Posted 03 Feb 2020 at 16:33
An abnormal result on a liver function blood test does not necessarily mean liver metastasis. You could ask about his having abiraterone or enzalutamide, either of which might be able to delay disease progression. Good luck.
User
Posted 03 Feb 2020 at 17:56
I’m sorry you all been dealt with in such a cavalier and unprofessional manner.

The main thing is to concentrate on care and support for your FIL.

At some point in the future you may want to air your grievances through the NHS complaints procedure. Things only get fixed if people complain.
User
Posted 03 Feb 2020 at 18:02

Dear Steerpike


How shocking for you, your wife and your father-in-law.


My partner’s care has been outstanding and his experience, whilst still being given often truly gutting news, has been very far from yours today.


I’m in no position to comment on anything medical, but send you my very kindest thoughts and hope that you get treated with more compassion in the future.


Jane

User
Posted 03 Feb 2020 at 18:02

Thank you for both your replies, Andy62 & Dark Warrior. Both very helpful. Yes he is happy for my wife and me to know. We accompany him to appointments. He doesn't always follow what they are saying. I will not criticise anyone. They are overwhelmed but still do amazing work. Communication though is difficult due to the range of diversity at the hospital we have to go to. They answer our questions but it's not knowing if there's something we don't know about that we should ask about that's worrying. Basically I thought we would be spoonfed information. Thirty years ago my Gran had Marie Curie nurses visiting her & I assumed the local hospital in Coventry arranged that. We haven't had any nurses visit us at home (he's with us again since M-in-L isn't that we'll). I've heard mention of community nurses. My wife is researching them now online. Thanks again for your replies. It's excellent to get ideas from everyone's experiences.

User
Posted 03 Feb 2020 at 18:44
Thank you Jane & Prostate Pete. Glad to hear other parts of the country still have good communication skills. Growing up in the Sixties, when anyone needed hospital, I heard parents and grandparents talking - everyone was just grateful there was any help at all - medical care that was free and more often than not made you better again! You took your chances and hoped for the best. If things didn't work out it wouldn't occur to anyone to criticise or blame those doing their best to help. Yes, it's useful to raise queries & question whenever things go wrong, but we shouldn't blame or criticise. Wouldn't that encourage better openness and improvement through self-analysis?
 
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