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First oncology appointment - father,oncologly

User
Posted 26 Nov 2016 at 20:10

I've posted elsewhere about my dad's recent diagnosis with what we think is locally (?) advanced PCa: http://community.prostatecanceruk.org/posts/t12204-Dad-diagnosed--prognosis-not-great#post152257

Just to recap, he's T4 N1 M0, Gleason 9, PSA 12.3.

He's waiting for the first oncology appointment - he was diagnosed by a consultant urologist. He had wanted me to accompany him to the appointment, which I also wanted to do, partly as moral support and partly to be an advocate for him, take notes and so on. (I'm his eldest daughter, 31). For that reason, he specifically asked the hospital to book him in for NEXT week (i.e. week beginning 5th Dec), as I'm on a business trip this week, and they promised to arrange it that way.

This afternoon he got a letter from the hospital: please come in this Monday 28th Nov at 10am! I won't be here. Either he will have to go alone, or I will have to cancel/postpone my trip (which will make me extremely unpopular at work, because it's on quite sensitive business). Or my younger sister could accompany him, but she deals with these situations in a very different way, and I think it would be more upsetting for her than helpful for my dad.

I assume it's too late to call them tomorrow and ask to rearrange it? I don't know if there are many hospital admin staff around on Sundays.

What can he expect to be told during this first oncology visit? Presumably a treatment plan - but are they going to turn around and say 'we think you have X years to live?' I don't want my dad to be alone when he hears that. 

User
Posted 27 Nov 2016 at 01:31

The trouble is, if you cancel Monday who knows how long you might have to wait for another appointment :-(

What worries you about your sister going along? It will probably be a bit of a non-event where they discuss which hormones and why, plus maybe whether or not they are offering the early chemo at that hospital. With M0 they are highly unlikely to be talking (or even thinking) about a prognosis - even when men are diagnosed late, most doctors wouldn't offer a prognosis unless the patient really pushed for one.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Nov 2016 at 10:36

If as indicted RT is the way foward then they normally want a few months of HT first so is a delay in meeting of any notable importance? However they might want another form of treatment to start as soon as in which case the meet is important. If the latter the medics will put patient treatment first even if that means leaving relatives etc to sort out any issues they have. As regards life expectancy until it's seen how treatment is responded to its just a guessing game so I doubt that will come up.

Ray

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User
Posted 26 Nov 2016 at 23:05

Sorry to hear your father is going through this.

There are members here with much more experience, as well as similar results and staging. They will likely give better advice. My first appointment with the oncologist is on Tuesday, but my previous appointments with urology and surgeon have all included nurses, who have been very helpful. However, I think it is essential you have a family member or friend to take notes and give support.

As good as the system is in responding to the diagnosis, ie the scans, appointments, and ultimately the treatment, the communications do sometimes fall between the cracks. I changed my meeting with the oncologist because it clashed with scheduled business meetings, and I only found out about the appointment because I phoned to change my meeting with the surgeon due to scheduled business meetings.

Unfortunately there won't be anyone there tomorrow to make the change. Obviously you don't want to waste a slot somebody else could have taken, but you have to put your father first and do what is best for him - in my opinion.

Good luck.

Chris

 

User
Posted 27 Nov 2016 at 01:31

The trouble is, if you cancel Monday who knows how long you might have to wait for another appointment :-(

What worries you about your sister going along? It will probably be a bit of a non-event where they discuss which hormones and why, plus maybe whether or not they are offering the early chemo at that hospital. With M0 they are highly unlikely to be talking (or even thinking) about a prognosis - even when men are diagnosed late, most doctors wouldn't offer a prognosis unless the patient really pushed for one.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Nov 2016 at 10:36

If as indicted RT is the way foward then they normally want a few months of HT first so is a delay in meeting of any notable importance? However they might want another form of treatment to start as soon as in which case the meet is important. If the latter the medics will put patient treatment first even if that means leaving relatives etc to sort out any issues they have. As regards life expectancy until it's seen how treatment is responded to its just a guessing game so I doubt that will come up.

Ray

User
Posted 27 Nov 2016 at 12:38

Ray is quite right, of course - I forgot that they were talking about possibly offering RT which is usually seen as a curative approach. If he is going to be on different hormones to the bicalutimide, they will want these to start asap and not wait so that family members can be there. And if there is a possibility of curative RT, then ignore what I said about early chemo :-/

Edited by member 27 Nov 2016 at 12:41  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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