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Secound appointment with oncologist tomorrow

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User

Posted 02 Nov 2016 at 17:59

Dad has his second appointment with the ongologist tomorrow he's been on hormone therapy and zoledronic acid his Gleeson is 4:5 and its spread to lymph and bones his PSA was 13 but has gone down and then back up again only slightly from 2.4 - 3.8 what I'm asking is there anything else I should be asking tomorrow apart from the normal things I'd be greatful of any suggestions I so don't want to waste our time there and get home to think of something we should of said.

User

Posted 02 Nov 2016 at 17:59

User

Posted 03 Nov 2016 at 21:14

Hi Manda,

Oh dear I can sympathise with your experience of oncologists that don't have a very good bedside manner our first appointment was dreadful to say the least. We have since changed hospitals and oncologist. It's not like you see on tv that's for sure.

Please take heart from what Lyn has said there are so many new treatments out there and we are LIVING proof of that . Trevor was on Bicalutamide for nearly two years and yes there are side affects but all bearable.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

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User

Posted 03 Nov 2016 at 08:43

Hi,

I just wanted to wish your Dad all the best for the appointment today.

I can't think of any questions to ask apart from discussing why the PSA sometimes varies in this way.

Sometimes you may think of questions during the appointment because of the information that is given to you at the time. The important thing is, ask about anything you don't understand.

Hope everything goes well.

Steve

User

Posted 03 Nov 2016 at 08:47

Thanks Steve very much means a lot. I re read my post rather a lot of waffling lol. Know there is no good answer to the question we all want to ask, and that would be it's going to be ok. Thanks for your comments like you say it's when your in the appointment it sometimes comes to you, what to ask.

Take care

Manda

User

Posted 03 Nov 2016 at 17:14

How did it go Manda?

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

User

Posted 03 Nov 2016 at 18:04

Hi Lyn

It was I guess what we expected although could see dad was pretty chocked, our ongologist is straight to the point we've only seen him once before and this time was at our local clinic it didt help matters he didt have dad's full notes so we had to go over everything when we saw him last time he was like it terminal aggressive advanced but you can still fight it, today he said to dad we all die of something and this is sadly what you are going to as his PSA has gone up to 4.7 he doesn't think hormone therapy alone is working so putting him a tablet daily we go back in 3/4 months and hopefully the tablet will of helped keep the PSA down. All pretty sad really I did want to ask how long are we looking at but didt want to know if you know what I mean. Last time I did ask he just said I could get run over by a bus tomorrow who knows but this time I sensed he knew more than he was saying.

Thank you for your kind message letting us know we are not alone

Manda xx

User

Posted 03 Nov 2016 at 18:39

Good Lord! How depressing and possibly unnecessarily so.

The hormone he is already on works by stopping the body from producing testosterone. In effect this starves the cancer but it seems in dad's case that hasn't worked as dramatically quickly as might have been hoped so they have added bicalutimide, which disguises any remaining testosterone so that the cancer can't find it. This might work for quite a while or it may only last a few months but when that fails and dad becomes hormone refractory (that means the cancer has learned to survive without testosterone) then other treatments become available like chemo (which is getting some great results in new combinations) enzalutimide, abiraterone, stilboestrol and radium 223. Sometimes after chemo, a treatment that had stopped working becomes effective again!

Perhaps for the next appointment try to go to the hospital rather than local clinic, especially if that was the reason the specialist didn't have dad's records.
If it was my dad I would want to check whether he was actually diagnosed with adenocarcinoma rather than one of the more rare types of prostate cancer ... is it written on his paperwork perhaps?

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

User

Posted 03 Nov 2016 at 18:40

It seems to me that your oncologist has the bedside manner of a badly trained rottweiler. He sounds as different from my Onco as chalk is from cheese.
Is it worth having a frank talk with Dad's GP, telling him exactly what it's like to deal with this guy, and asking if you can have a second opinion?

User

Posted 03 Nov 2016 at 20:14

Hi Manda
Im so sorry to hear you have had a bad experience with your dads oncologist !! I too went along to my dads apps with him and it's not the most pleasant experience to start with never mind having an onco with no people skills being so negative. I understand they have to be honest with patients but when it's put so bluntly and clinically its not nice at all, But I hope you can take a little comfort from what Lyn has to say about chemo and other treatments hopefully being available for your dad Down the line, please hold on to that thought,

Take care
Viv xx

The only time you should look back is to see how far you have come

User

Posted 03 Nov 2016 at 20:52

Thank you for your comments, all you want is for someone to say it's going to be ok. And we all know that's not going to happen, I appreciate all your comments Lynn and will certainly bring that up at our next appointment.

And Vivv it's hard to see our dads the men who've always been there be hit by something so hard.

im worried Lynn that the daily tablet beginning with B that he has been now put onto will make him even more depressed and down, the hormone therapy he's suffered awful side effects with cold sweats and feeling of helplessness. Don't get me wrong he is a determined strong man and always keeps a happy face when we're about it's the night times mum says she hears him crying that's the saddest part. If it is the other type of cancer you mentioned would a blood test not if showed that.

Thank you all again xx

User

Posted 03 Nov 2016 at 21:14

Hi Manda,

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 03 Nov 2016 at 21:35

Wow Julie I've just read yours ...well Trevor's profile what an inspiration. And good too about the Bisicoydomill ( not spelt right ) 😀 All our ongologist was concerned about was dad's PSA saying that 4.7 is really a big jump and at the higher end for his age 75 he didt say anything about the cancer which we know has spread to his lymph pelvis lower spine and shoulder. Just wish there was answer to stop the suffering, I know we all do. It's just the not knowing, from the way he spoke today he made it sound he had such little time left.

I may well speak to dad's GP they are both mum and dad quiet old school if I suggested they get a second opinion or referral they wouldn't like to. As I'm sure our ongologist is doing his best, I just want the best for my dad.

All the best to you both and thanks for taking the time to reply

Luv Manda xx

User

Posted 03 Nov 2016 at 23:52

Originally Posted by: Online Community Member

If it is the other type of cancer you mentioned would a blood test not if showed that.

Hi manda, not the blood test but the biopsy - if you could ask the GP to look at the diagnosis letter that said it was a G4+5 it should say somewhere which type of prostate cancer it is (there are at least 27 types!) The GP can't give you information without dad's consent so do you think you could persuade dad to speak to the GP with you to give permission for you and the GP to communicate directly with each other?

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

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