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SECOND OPINION RE PROGNOSIS FOR DAD? - FEELING A LOT SCARED

3 Jan 2018 23:04

Hi,
Don't really know how to start this as my head is all still a bit mush! 
My Dad who is 84 was diagnosed with prostate cancer 8 years ago.  He had radiotherapy at the start and regular zoladex injections since and it had mostly kept its head down until a couple of months ago. Dad's PSA levels have been rising and following a CT scan they have re-staged him and it has shown ascitis with omental stranding and a peritoneal nodule abutting the liver. We had noticed that he was struggling to fasten his trousers up.
Dad didn't want to know anymore after his Oncologist in November said that they were discharging him and would now place him in the 'gold standard framework for palliative care and make a referral to the Community Macmillan team'. She took me quietly to one side and said that she doesn't feel that Dad really understood what she meant and wanted to ensure that I did ...........she then said that Dad needed to start thinking about making certain decisions with regard to his preferred place of care as we were talking a prognosis of 6 months!!!  Dad doesn't know this and has said the last thing he ever wants is to be told 'how long he has left'. 
I was and still am in shock. His GP rang him yesterday to talk to him and Dad got so upset he hung up on him. Dad said he felt that people were underestimating him as he would 'shake this'.  He doesn't want anyone else ringing or visiting him and told me he will ring THEM when he feels he is at that stage. 
I am feeling really scared.  Mum passed away from lung cancer 4 years ago and towards the end it was so quick that she didn't get any chance to let her 'wishes' be known. I have tried explaining this to Dad but he got really mad so I know I can't broach it again and have to wait for him if/when he is ready to.
In the last 2 weeks Dad has been sleeping a lot during the day and has started saying to me his chest hurts (I think it is the ascitis pushing on everything?) I suggested he let me contact the macmillan team or the GP but he says he 'is fine' and he will ring if he needs to. 
He lives alone now but only 100 yards down the road from me and I go in several times a day as he is wheelchair bound and had his leg amputated 6 months ago due to critical limb ischaemia following a stroke in February last year ........ it has been a nightmare of a year for him. He refuses carers and will only allow me to come in to help him, at the moment he is still able to get himself up, dressed and into his wheelchair on his own which is good but I know that will change. Feeling a bit scared at the moment. 
Could you explain what omental stranding and a peritoneal nodule is? I understand that the cancer has spread (not in his bones though) ..........but should I ask for a second opinion on his prognosis? My Dad has been with the same oncologist for the last 8 years and she is a honorary senior lecturer aswell as a consultant clinical oncologist and knows my Dad .............but just wonder if I am clutching at straws asking for a second opinion?

Is there any advice you could give me to help him? 

Thank you for reading this .........there is no-one else to talk to

 

Re: SECOND OPINION RE PROGNOSIS FOR DAD? - FEELING A LOT SCARED

5 Jan 2018 12:11 in response to Blueberrycat

Hello Blueberrycat,

Thank you for your post.  I am very sorry to hear about your dad, this seems like a difficult time for you all.

First of all let me just explain, as much as I can (we are not doctors that specialise in CT scans findings), about the CT findings.  Ascites is a free flowing fluid, when it is related to cancer it indicates that cancer cells are in the fluid.  Ascites can increase and put pressure on organs inside the body.  We have more information about ascites  and how it can be treated here 

Regarding omental stranding; the omentum is a layer of tissue that protects the organs inside the stomach. Stranding means there is some thickening in the area. The peritoneum is also a layer of tissue that protects the organs within the pelvis.  A nodule might mean a growth or enlarged lymph node, but I can’t be sure. It says that it is abutting the liver which might mean the nodule contains cancer that it is very close to the liver.  Unfortunately when there are ascites it does mean that the cancer has spread (metastasised).

I realise that this is a difficult situation especially because at this present time your dad has refused any support from Carers and the Macmillan team. However, given time he may well change his mind.  It might be a good idea, if you have not already done so, to contact the Macmillan team yourself to talk about your father.  The team will be used to this type of situation.  They may arrange that initially they call him or he calls them. Remember he has said that he would contact them if he needed to.  From what you say you are providing physical care and your right this is likely to change as the cancer progresses.

Your dad may be frightened and while he is able to make decisions he probably can’t yet quite believe what is happening to him. And that the help he could get is very likely to make him feel better. While it may be difficult to try and get him to understand his situation you do need to be honest with your dad about the level of support you are able to give.  Telling him that it is you that needs the support, not necessarily him.  Also if he wants to stay at home he will at some point need to let health professionals in to his home to help care for him. You may want to say to your dad that if he was supported at home it would reduce the risk of him being admitted to hospital, most probably through A&E. I am sorry if this all sounds harsh.

Please remember that if you are particularly concerned that your dad is unwell or at risk of coming to harm you do need to speak to a doctor about him. His GP is in charge of his health care needs while he is at home and it would be fine for you to contact the practice about your father.

I am not sure if your dad would benefit from having a second opinion.  It is unlikely that having one would change his situation and may cause your dad more worry.

We have information about caring for people at home with advanced cancer that you might like to read, click here to see it.  Macmillan, on their website,  also have information about advanced cancer that include the support available. Click here  to see it.

I hope this has been helpful. Please do get back to us if you have any more questions or call us on 0808 800 4040. We are here from Monday to Friday, 9am to 5pm.

Take care

Caroline

Re: SECOND OPINION RE PROGNOSIS FOR DAD? - FEELING A LOT SCARED

6 Jan 2018 00:34 in response to CRUK Nurse Caroline
Hi Caroline, Thank you for your reply. I think I will contact the Macmillan team and have a chat with them. I was asking about a second opinion as he is insistent he will 'shake this off' so thought this may help him accept it more .........but it may just put more stress on him, which I don't want to do. Thanks again