Awaiting results but questions!

Hi Lois, sorry to hear that your stepdad is going through this.  In answer to your queries above, I can only let you know my own experience.  Hospital trusts throughout the country will all vary to some extent. 

My PSA was 4.5 (see my bio for my story).  Because of the MRI scan, I was required to have a biopsy on 16/10/2024.  They said that there may be a backlog and it may take around three to four weeks.  However, shortly after they made an appointment for me to discuss my results.  That was on 04/11/2024 and I met a Trainee Advanced Specialist Practitioner.  I think that she was above that of a Specialist Nurse.  I say that because it was an Advanced Specialist Nurse who performed my biopsy.  But I have been dealing with the Cancer Specialist Nurse and she doesn't do procedures but is more of a go to person to ask about specific questions and after operation care. So it wasn't a Urology Doctor who gave me my biopsy results, although later in my treatment I have spoken to Urology Doctors.

The Trainee ASP gave me my results and confirmed that I did have PCa and told me my the three options.  Bear in mind your stepdad may have a completely different diagnosis.  

I think that it is common for results of patients to be discussed at MDT (multi-disciplinary team meetings - Doctors, Surgeons, Oncologist) and they come to an initial conclusion then one person gives you the results at an appointment.  I have even heard some trusts telephone with the result!

In my diagnosis, I was initially on Active Surveillance.  But the Practitioner said that I could speak to Surgeon or Oncologist to see what otehr options were available.  

Hope this helps.  And once again not every hospital trust will be the same.  

Thanks so much for the reply. I do hope you’re doing well. I think for us it’s just the waiting that’s so frustrating but I know how much our nhs are stretched! X

My results were delivered by a specialist nurse. The information given was encouraging, but because I had a high risk cancer radical radiotherapy was the principal option, so my next appointment was to be with the oncologist to consider this and other options. 

I did my research, on this and other specialist sites. I found the NICE recommendations for my grade and staging of cancer (see bio), and went in ready to persuade. 

The oncologist started by saying she was going to recommend what I decided I wanted, so we had a very amicable discussion! 

So to answer your questions: 

• Yes.
• Probably a specialist nurse.

Do the research, and go in with the questions that need to be answered. Make sure someone goes with him, because he will NOT remember everything. 

In my own case my wife has an operation the day before, so she couldn't go. I took my two daughters. They terrify me, and did seem to slightly intimidate the Oncologist.

The questions need your own research. Only your stepdad can decide what it is important to him. 

This is a crazy illness. 

Almost everyone has some life expectancy. Most will die of something else.

It then becomes a matter of looking at the treatment options, and deciding on the basis of the side effects, bearing in mind that the reactions to the side effects are also individual. Some have everything, some have a selection, some have none. 

I have found that it is a matter of your stepdad understanding the whole package. There are likely to be some side effects, and it is better if your stepdad decides in advance that it is worth it. 

One of my side effects from the hormone therapy is not flushes. My attitude to these at first was that I just had to put up with them.  However, the Chiropractor I go to changed my view by saying "I'd take that as a win" and then started that the hot flushes were a sign that the therapy was in action. 

When I get one now I tell everyone, and it to hug them.

Really grateful for this response Steve. I’m being drip fed information, which is absolutely his prerogative. We shall see what happens at this appt, and I will of course keep you all updated. 

Hello Lois (Goforlala) 

A warm welcome to the group, although I am so sorry to find you here under the circumstances.

As LDL said in the first post, every UK hospital trust is different so the issue may well be if yous stepdad is convinced he's cancer free and it turns out he does indeed have cancer the meeting could be a shock to the system. It's also possible that whatever the result there may well be a Macmillan Nurse present at the meeting.

Even with a low PSA I think you need to be prepared so I would

* Ensure he goes to the meeting with someone else for support - 4 ears are better than 2.

* Take a pad and pen to take motes.

* Have al list of questions to ask - just in case he does have cancer - this link may help - Questions for your Team.

I hope this helps - please do come back to me if you have any questions.

Best wishes - Brian.