First Visit to Oncologist

User

Posted 27 Apr 2016 at 20:32

Just taken my father for his first visit to the oncologist and it was a very depressing experience. He has a bone met in his sacrium that is causing no pain and some discomfort when urinating. He has been on Prostap for about 6 months now. He has other co-morbidities to deal with as well.

I have to say the oncoligist's attitude was so negative as to be depressing. He said the prostap wont last for ever (which we know), he's too ill for chemo but when the prostap stops working he might, quote "might" be suitable for other hormone therapy depending on his health. He said he would give radiation for the prostate pain and for the met when it started to hurt, but quote "...there's nothing we can do for where ever else its spread." An unnecessary comment I thought to an 89 year old. Oh and he also said that the prostap will only remain effective for 18 months, but I have been told that it can last much longer than that.

My two questions are:

1. How long does Prostap remain effective as a genral rule

2. How do I go about changing my father's oncologist, as the last thing my 89 year old father needs is a doom-monger!! This guy was more interested in my fathers pulmonary fibrosis and how life limiting that was likely to be and how it was likely to stop him from having any further treatment than as to reassuring as best he could my father about his future.

Feeling really quite down but when I analyse it there is not much reason to feel that way except for the damn oncoligists general attitude. Both my father and myself are fully aware he is not going to live for ever, but I didn't think there was any need for such an attitude especially given my fathers age.

All suggestions extremely welcome.

Thanks in advance,

Jess

User

Posted 27 Apr 2016 at 21:24

Rather than change the oncologist, dad could ask whether it is possible to see the nurse specialist for his reviews perhaps.

I am sorry that you felt it was doom and gloom although personally, I would prefer to hear the real situation rather than leave an appointment believing things are better than they are. The onco has a better insight than any of us into how prostap is working for your dad, and presumably his estimate of 18 months is in your dad's case rather than a general estimate. We have had men on here still well after 10 years on HT but we have had others that have only lived a few months. As your dad's symptoms have increased since he started on prostap, that may be indicating to the onco that it isn't going to be a 10 year story. He will also have all the data to hand about the longevity of prostap in men of different age brackets or with different combinations of health issues.

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

User

Posted 27 Apr 2016 at 22:17

Thanks Lyn,

Actually my father's condition has improved enormously since he has been put on prostap. The pain from his bone met has gone completely and his psa has gone down consitently over the period and his testosterone is below the magical 0.4. It is heartening to hear that HT can work for longer periods of time.

Neither my father or myself have or intend to stick our head in the sand, I just feel that the oncoogists attitude was unecessarily fatalistic bearing in mind my father's age and frailty.

I still feel I would like to see if we can change oncologist not for some denial fuelled reason but simply because I would like my father to experience a kinder bedside manner to accompany him on his final journey, so if anyone knows how to go about it I would appreciate some pointers.

Thanks

jess

User

Posted 27 Apr 2016 at 22:38

Sorry Jess - I was basing that on your previous threads. In your Jan posts you reported that dad was experiencing new pain and in February a bone met was confirmed - and that these were 4 months after starting HT. That might be part of the onco's assessment of how long prostap is likely to work, along with how the PSA is falling. Did you get a PSA reading at this most recent appointment, as I see the T level was still 0.4?

Dad can either contact the onco (probably via his secretary) to request a referral to another one, or dad could ask the GP to refer him to a different onco for a second opinion and then ask the second opinion doctor whether he will accept the transfer. Either way, dad would end up having to say that he is unhappy with the onco he has and why.

If you are at a large hospital with a number of urological oncos, it should be possible to transfer without changing hospital if dad says he is unhappy. It might still be easier to request that appointments are nurse-led rather than consultant led, or to ask for dad to be seen by one of the junior doctors.

Edited by member 27 Apr 2016 at 22:48 | Reason: Not specified

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

User

Posted 28 Apr 2016 at 08:31

`Hi Lyn,

No there was no recent psa, you would have thought the would have requested one before we went, but heyho!! We had one taken on the way out. The testosterone is from March I think so that is also inaccurate. But all of this is irrelevent as by this mornig my Dad has given up and is just resigned himself to die, when yesterday before we saw that b*****d he was full of the joys of spring. These people of no idea what power they weld over the frail and ill informed. It is so totally unecessary to be that brutally frank with someone who is that old and just as likely to die from a cold they pick up from someone in the supermarket. Have these so called experts got no common sense or indeed compassion at all.

I don't know how I can get his spirits back up, I'm so angry with the man, its all I can do not to go over there and tear his head off. Fortunately we have a very good GP so I will try to talk to him. The idiotic thing is the man told my father there was little he could/needed to do based on the prognosis of a comorbidity that is not this bloke specialism!!! In a nutshell he said, "....there's not much we can do when the prostap runs out but don't worry old chap because the pulmonary fibrosis will have killed you before then - have a nice day :)"

Not his exact words obvs, but they might as well have been. Sorry to be so angry on here but sometimes I wonder how they "specialists" get where they are.

We shall struggle on no doubt.

Cheers,

Jess

User

Posted 28 Apr 2016 at 09:18

Hi Jess
The first thing I would do personally is contact that Onco's private secretary. Although loyal to their boss , they always seem to be very kind but busy people. I would then make it VERY clear to that person how extremely upset you are and tell them about the appt. I would demand a personal apology and if that didn't happen I'd bloody well go thru the official channels to get his bedside manner improved. If what you say is true ( and I believe you ! ) then it's appalling to be honest. Hope you can cheer dad up
Chris xx

User

Posted 28 Apr 2016 at 10:17

I am really sorry to read your post, this is the last thing that you need at a time like this.

I hope that your Dad will 'buck up' and feel more positive in a few days time.

At 89 he has done incredibly well and no doubt been through some tough times in his life.

How great for him to have you on his side.

ATB

Alison

User

Posted 28 Apr 2016 at 10:26

Some people appreciate a frank discussion while for others it is not appropriate. When you speak to the nurse specialist, it might be worth clarifying whether you were supposed to go to the GP a week or so before the onco appointment to get a PSA test. That is how it usually works - the onco doesn't arrange it.

I hope dad's spirits are lifted again soon - he must be a strong character to have got this far!

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

User

Posted 28 Apr 2016 at 23:53

Jess

I completely agree that the bedside manner of this doctor was not right for your dad, like Lyn I think maybe he was being too honest, making an assumption that your dad had come to terms with his various illnesses and assumed (wrongly) that he was ready to meet his maker one way or the other. I don't think they mean to be unkind but sometimes they make me mad too, with off hand comments that make me think they don't listen. We tend to see different oncologists each time we go as we only get to see the great man when things look tough. He sees all the new patients and I think that's right. All I can suggest is to tell your dad that his fighting spirit has kept him going this long and no silly doctor's comment is going to change that.

Bless him, I hope he starts to feel more positive soon.

Love

Devonmaid

User

Posted 29 Apr 2016 at 07:38

hi sorry to read all this about your dad, I know this may not help but spoke with my GP about how Drs talk with patients and he said once he made a bit of a joke to try and lighten the atmosphere only to get reported for it, he completely miss judged the patient he was dealing with, my daughter works in NHS and when I mentioned this to her she said that's why a lot of Drs do not tell you much

so I am guessing he may have completely read your dad wrong, but your dad does need a cheer up and you really need an answer, would agree with approaching his secretary first

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 29 Apr 2016 at 08:21

Hi Everyone,

Firstly, sorry I haven't got back earlier but been understandably busy yesterday.

Thank you all so much for your support and suggestions. Thinknig back to the appt, as we left a woman who had been sitting in the room listening rushed up to me and gave me her card with what I now recall as quite a concerned look and said she was a prostate nurse specialist and to call her if I had any questions or problems. On reflection I wonder whether she prehaps thought his attitude inappropriate for the circumstances and maybe she would be a good place to start. I think I will ring her on monday as I'm busy today. The other thing I did was make an appointment to see his lovely pulmanory fibrosis specialist, as I want her to be aware of this blokes attitude to my fathers condition and see if and when he refuses further hormone treatment for my father based on his pf she might be willing to add her expertise into the mix just to make sure this blokes decision is based in fact and not just because he fancies himself as a bit of a respiratory specialist on the side.

In other news you will be pleased to hear my father has perked up a bit. It was my mums birthday yesterday so he had friends round nd ran himself ragged looking after everyone. I think the fact that he could do all that made him think he's not for the scrap heap just yet. He's a little quite this morning but fortunately we have another, non-illness related, busy day ahead so that should help.

Thanks once again all of you, will keep you posted of developments.

Love,

Jess x

User

Posted 29 Apr 2016 at 09:31

hi jess can understand with dad feeling useless when I manage to do a job round the house feel as pleased as punch but I know what my limitations are, so does the wife Mrs Hawkeye, glad to hear he has perked up, I also given a card by one of the nurses who said call her anytime and have when needed its been good to know some one their who cares, so give her a bell, I ma terrible at times at remembering what people have said to me and it only comes back when someone mentions something similar

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

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