A little confused

PCPs and specialists don't always communicate. I know mine don't.
If you can, have a private conversation with his PCP, and tell him what the oncologist has said. Maybe he will cancel the scan.

Thank you for your input. Will call the consultant tomorrow and take his advice. There’s no way I want my father having to go through more than he already has. Tall Allen... I will be asking that very question. Thank you x

I'm so sorry to hear this news Kathy. I hope your dad doesn't know. The only thing I can think of to say is that I have noticed my dad's voice cracking often and I have attributed it to the hormone medication, you know like when a teenager's voice changes.
I just saw a page regarding Zoladex and hoarseness. While not many, there have been some people who have experienced hoarseness when taking the drug. https://www.ehealthme.com/ds/zoladex/hoarseness-or-changing-voice/

Don't the doctors ever communicate? When I go to the doc or take my son to his, I always ask them to send a copy of the report to the other docs or in my son's case, the people who are on his autism team. And they told YOU to get a hold of the doctor and ask him what benefit he thinks could come from the tests for your dad? Isn't that THEIR job? I don't understand that. What about the people who never question anything? Geez! I think you are doing the right thing. You are doing what you can for your dad which shows how much you love him. Are you sure the doctor will be able to talk to you on the phone tomorrow without your dad being present? Over here, a person needs to write down who he/she allows access to their medical records. It has to do with privacy laws. Not sure if you have the same thing there or not but I just wanted to throw that info out in case you don't have it in place yet if you need it.
As for the scans, I am not sure how they do them but I would assume they are not as intense as the bone scan. I'm trying to think what I would do in your situation. If your dad doesn't mind doing the scans I suppose you could advise him to do them looking at it like "what have you got to lose?" Or if he doesn't want to bother and would rather not know what is going on or if the scans are too intense, then maybe I'd advise him to not have them done. Sometimes ignorance is bliss and if he saw that something got really bad he may be too disheartened and give up. Those are just some thoughts.

142: it’s the same here, the generic the general practitioner deals with.

Lisa: just a little sad about it but the general practitioner has a duty to conduct some sort of investigation I suppose. You mention patient confidentiality.... there are laws here too so having been able to book a telephone consultation with his Dr was rather strange too. No questions were asked... will see what he says today. I do understand he has a job to do but with Dad the way he is, even just getting him to the hospital will be an ordeal. Like his oncologist said... what are the benefits of this? If it will be beneficial, great, I’m all for it, but with knowing what we know...can’t quite get my head round it. Will post later. I hope your Dad is doing well 😘 x

Well... I spoke to Dad’s general practitioner, a very pleasant man... I didn’t call to complain about anything, simply just to understand why he had made the decision to send Dad for tests. After a fairly long chat I got the feeling he didn’t have a very clear picture of what Dad’s situation is. He’s not an oncologist so I suppose I shouldn’t really expect him to know all the ins and outs of Dad’s pca. I realise he is only trying to help...but unfortunately Dad now has to go along to see the ear/throat specialist. The chest x ray, he can just go for whenever he decides to and will be seen straight away. I’m just hoping that when he goes they don’t deliver more bad news... he doesn’t need to hear it. I don’t think Dad realises it could be part of his illness.... or maybe he does... I’m really not sure.

He is eating well enough, has been experiencing nausea and this evening vomited, which is the first time that has happened during the course of the disease. As always, trying to keep his spirits up. When he has good days he’s chatty etc... it’s the days when his mobility isn’t good and when he feels nauseous, those are the days he appears depressed. A pretty incredible man.

John... hats off to your wife, nurses do a wonderful job.

Hi Lisa thank you for asking. He cancelled the ear, nose and throat appointment... well... changed it to the following week. I called ahead to ensure no procedures were going to take place, I was told it was just a consultation so there won’t be. Still seems non sensical as the letter apparently says the reason for referral are hoarse voice and ear infection. We shall see, I’m hoping Dad doesn’t attend as I know it will take a lot out of him.

He has good days and bad days. He’s sleeping more than he was, some days his appetite is very poor... yesterday he ate well. We just play it by ear day to day. He continues to amaze me every day. I will keep you updated. I’m thinking of getting him some turmeric tablets... hopefully they might help him a little... I’m
I believe the curcumin is said to have anticancer effects... it’s something to try I guess.

How is your Dad getting on? X

Docs don't necessarily communicate directly. What I've observed is that after I've seen a specialist a report is (supposed to be) sent to my GP, then it goes in my chart. This may be a stack of papers or electronically in the doc's office. Generally my doc does not actually see what has transpired until just before I see him, the GP, when he peruses my file for a few seconds before seeing him face to face. That way he can walk in and sound like he knows what's going on.

So while doc has all this stuff going on, including having just come from a similar yet totally different confrontation with the patient just before, he may or may not remember anything that was said on your previous visit. Sometimes you may need to give him the 30 second rundown (if doc is the type that allows you to speak).

Now this entire process just completely falls apart if the specialist's office staff failed to forward a copy of the report to your GP, or to the referring physician. It happens more often than you would like to think. We believe they are all well organized and efficient. The office staff is constantly distracted by phone calls and incidental requests. They set down a piece of paper or have to look something up on the computer, then lose track of what they were working on. Your report gets filed without ever being forwarded. It happens. Sad, but I have also been bitten by this on many occasions.

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By the way, I would like to re-emphasize what John_TX said a few posts above. My wife is also a BSN with 40 years of hospital experience and would come home and vent about all the stuff that happened. We had first met shortly after I'd recently had a couple of very traumatic surgical experiences, and early in our marriage I would climb the walls with anxiety when her venting hit home to stuff I'd gone thru.

Like most professions, everything seems to be non-stop chaos. I guess that's why they call it "work".

John_TX said...
My wife is an RN (BSN at University of Texas) and worked in several hospitals, a nursing home, hospice, etc., When she worked in hospitals she would often come home sounding off about a physician ordering this test or that test (or even surgery) for geriatric patients - even some in their 80s. One situation I remember was a Doc that ordered a colonoscopy for a "little old man in his 80s". She was incensed the Doc put this guy through the hassle of the prep for zero benefit aside from the Doc's wallet.

And on the flip side, she's seen many a family member that won't let go of a patient in palliative care - the family wants anything and everything done to prolong life when there's no clear benefit for the patient.

Im sorry for all that you are going thru...you may have to put your foot down with your GP...and others who are clearly out of the loop...you should not have to...but there it is...your father is dying...what is easiest for you and your father... at this stage is...comfort...this...imo...should be the goal...most medicos paint by numbers... a picture is produced...but with little life

Kathy and Lisa, I wish you both the best as you deal with your fathers' PC and other issues. When they have good days, it makes life easier to handle. Just following along and hope there will be no new complications.

Kathy, you're doing all the right things. (I hope you took notes for the Bolognese sauce). He will surprise you sometimes with what he wants to do. In these situations it really is our job to do what we can to accommodate them.

And, really, does diet really mean all that much at this time? Or which drugs/supplements he takes? If he wants it, and it's not going to hurt him (much), then why not?

Hi Kathy,
I well remember the " out of breath " experience with my DH. It scared him when he felt like he couldn't breathe. After a trip to the ER, we were doing breathing treatments and rescue inhaler with little effect. Finally someone (I think hospice) said to try the liquid morphine. I don't know why it works, but it does work!
Beth