Everybody knows but him....

[Annarose2014]

Last week my Dad was diagnosed with a brain tumour. Its been a terrible shock as we had no warning. Horrific.

He's been told that the radiation will hopefully repress his (very) recent symptoms. He's also been told that it can't be fully eradicated, so he'll have radiation and "after that, we'll take it from there".

However he has not been told that it is the most agressive form, that after the radiation it will be purely palliative care, and that he'll be dead by summer. Even typing those words is unreal......

I suspect the oncologist is doing a softly softly approach and does not have these conversations until after treatment is exhausted. So I'm presuming (??) that he'll have the radiation, he'll have temporary repreive, then he'll start to get sinister symptoms and THEN the news will be broken that its palliative. I guess?

Which I have no problem with, as he'll be distraught and it would be appalling for him to be told the full truth within a week of all this starting. He is a bit fragile as a person. He would turn his face to the wall. Talk of suicide, etc.

But in the last week all the extended family have rallied around and have visited him in hospital and have figured out enough on their own so that we basically had to admit the prognosis or flat out lie to their faces, which seemed pointless given how soon he's going to be gone.

So now we're in this grim phase where everyone knows but him.

It feels all wrong but they really had figured out it was very advanced, and he really shouldn't know yet based on his nervous emotional personality. Therefore I'm not sure how else things could have fallen.

Does anyone have any experience of this in their own cases? I'm devastated and I feel this "secret" is just adding to the torture.

Annarose2014, how awful for you all.
I have no experience to offer I'm afraid but I can see what a terrible situation you are all in. If the oncologist thinks this is the best approach, maybe you need to ask them how they see this playing out?
I guess they see it as a way of helping your dad cope rather than keeping a secret from him. Is there anything to gain from him knowing the full prognosis just now? I suppose one worry would be that someone else inadvertently says something in front of him though.
Sending you a hug and hoping someone comes along soon with relevant experience to help you.

My grandfather asked not to be given too much information, so we all knew that he didn't have long left but he didn't.
To be honest, it worked out well. He was able to come to a gradual realisation of the prognosis, rather than have the shock of someone telling him.
It was quick...he was diagnosed in February, died in May. It was terrible of course, but I think it went as well as realistically possible.

Sorry you're going through this. I hope you get to enjoy your dad for a little longer...it may sound crazy but we made some lovely memories during grandad's last months. I hope you can do the same.

Sorry, but maybe I've missed something from your original post - it sounds as though you are drawing your own conclusions from what has been said re prognosis - I very much doubt any doctor would have made the comment that he will be "dead by the summer". It is notoriously difficult to make any prediction about how long someone will live. You say "everyone knows but him", but what exactly do they know, or think they know?

I think you need to take a step back here and let your Dad work through his treatment a step at a time without fast forwarding to the worst case scenario. It's horrible not knowing how things will turn out, but whatever you think you've worked out and are presuming will happen, it may well not be that way.
Good luck to all of you.

How awful for you -I am so sorry.

I feel strongly that unless a patient specifically says "I don't want to know" the doctor should communicate first with the patient and then with the family - of course in some cases there will be special circumstances. In fact I am a bit surprised that the doctor explained everything to next of kin but not to the patient, your dad, himself. Getting consent etc must be very hard if the patient doesn't know the diagnosis.

I think it is very very hard on relatives when they have to hide something from their loved one. Also sometimes I think that the patient actually knows or suspects full well but because it is a secret is stopped from talking to their family about the situation - for fear of upsetting them.

Is there a palliative care unit in the hospital? If so, I suggest you ask for a consult. Your dad is still in active treatment so not ready for palliative care but they may be very helpful to you in dealing with this particular issue.

When my FIL had cancer and died, our only regret is that he didn't enter palliative care sooner. Once he did, everything became easier. My MIL's regret is that she never had an intimate conversation with him about what was happening and how she felt about him during it all.

Sorry you are having to go through this - cancer is never easy.

However, I have a few questions. Have you been told the prognosis by the doctors, while your father hasn't ? Are you deciding your father is too emotionally fragile to deal with his own life ? If, for argument's sake, he did choose suicide rather than letting the disease take its course - surely that is a valid choice that only he can make ? If you don't let him have that choice, then arguably you could be condemning him to something he would have not chosen, given the choice.

He wouldn't actually commit suicide. He'd torture himself and everyone around him with talk of it. He has what used to be called in past times "nerves".

I don't think he would appreciate being told now. Firstly, the oncologist probably wouldn't agree to telling him until the radiation is over and I'd be led by the professionals. Secondly, he'd freak out. But I know that after the radiation we have to look into palliative care services and I'm petrified of the day he finds out.

This sounds awful but I dread his realisation almost more than anything (other than the end of course). I'm a nurse and have no fear of the practicalities, the personal care etc. i would gladly do all of that for him and he'd let me. But the emotional torture we'd all go through once he finds out scares the life out of me. He'll be sooo bitter.

I obviously don't know what his wish as regards knowing would be, and its not a conversation I can have now "Hey Dad, say you were going to die, would ya wanna know?"

I know he won't be kept in the dark forever. I know sooner or later we'll bring him back for review and he'll be told. Like I said, he's been told they can't get rid of it but I suspect he thinks it'll just lurk dormant afterwards.

In answer to how do I know: its a tumour with a known progess, and without surgery and with his age and at the level its at (its huge) it's less than 6 months. I asked the oncologist privately if it would be 6 months or nearer to three and he said whilst he wouldn't give a specific amount, it would be shorter rather than longer. So whilst I don't have a number of months, we do know the ballpark.

It's never easy :(

My mum was told she had terminal cancer, but somehow she managed to act as if she believed she was going to get better, so for me at least it made it impossible to talk to her about how she wanted the end stages to be. Even when she was horrendously ill, she talked about going to visit places the next summer.

I guess people react they way they do, and nothing much anyone else can do about it. Maybe he will do exactly as you expect, and maybe he will surprise you. Whatever, it is going to be a tough few months for you all. Try and give yourself some space when you can.

so sorry you're going through this. A family member was recently diagnosed with a brain tumour, and although she was given the diagnosis that it was malignant, she wasn't given the prognosis even though the family were. The reason why was that she didn't ask. The consultant said at the time that it is very common for the patient not to ask but that they generaly do once symptoms re-occur or once treatment finishes and they want to know what next. The diagnosis itself is a huge shock, and often it's the need to hold on to life that stops patients slipping into despair.

Could you speak to an organisation like the brain tumour charity, they have excellent resources available to help in these situations.

We had the same with my dad last September only this time we knew about the prognosis but my parents didn't. He had a grade 4 glioblastoma and the treatment was to halt disease progression as much as possible. My parents were so positive and gung ho about treatment and beating it that the discussion about prognosis never really came up.
Seven weeks after my dad was initially told he had a brain tumour his condition deteriorated to the point where he lout consciousness and we were then told there was nothing more that could be done.
He died six days later in our wonderful local hospice. My sister, mum and I had time when dad was in the hospice to talk about what had happened with the disease progression and we were all so pleased they had no idea that it was terminal.

Hi, we had the same with my dad. He was given a 5 month prognosis for a form of cancer. There was no treatment other than palliative.

He was never officially told this and my mum make the decision not to tell him based on how well she knew my dad. I think it was the right decision. He never gave up trying and although he died 5 weeks after his diagnosis, not 5 months, he hadn't given up on life, if that makes sense.

It's important to say though that he was never lied to or misled, it just wasn't discussed with him and I think he didn't want to know. If he had, he could have found out his prognosis very easily. He knew there was no treatment and put his faith in alternative remedies which although were unsuccessful, caused him no additional harm.

I think that the answer will unfold for you and your dad might respond in ways that you're not expecting.

As other posters have advised, just let things unfold and know that everything you do as a family you are doing with your dad's welfare in mind. That's all you can do really.

So sorry you're facing this

Annarose I also meant to say that I'm so sorry you're going through this. Thinking about losing one of one's parents is almost unimaginable and when it does happen it's devastating, especially in these circumstances. Life seems so cruel and my heart goes out to you.

Thank you so much. Hearing stories where the patient never found out is heartening as I suspect the best thing for Dad would be to never find out.

I think he would love to just go to sleep, looking out his own bedroom window. I dearly want that to be his end and will try to get all the community support possible.

From experience, it's important to let the patient come to the realisation at his or her own pace. It's not up to you tell him anything. It's up to the medical staff to provide the information that the patient asks for. And if they don't ask for more, the staff don't give it.

It is your job (and it's bloody hard) to listen to your dad and not to make judgments or to push him to ask more than he wants to. At some point your dad will want to know and then he may want to talk - or he may not.

You have to do everything at a pace dictated by the patient - not your pace.

I'm sorry - it's awful.

Annarose I am so sorry you are in this position, and that you face losing your father.

My stepfather had a brain tumour, incurable as it was multiple malignant growths which had been dormant, but suddenly all grew. It was agreed not to tell him it was terminal as it would distress him, but his sister in law took it upon herself to tell him anyway .

He was very upset but my mum reassured him she was not correct, he forgot quickly both because of his illness and the fog of medication. He went home and died peacefully in the local hospital he fell asleep and did not wake up.

I would avoid telling him unless he asks, and you may find out he chooses not to. I've told you about my stepfather as I hope it illustrates that even if you do tell him, he may not remember, so please do not feel bad if after treatment it is not in his best interests to tell him.

Again, I'm really sorry this has happened to you and your family

So sorry you're going through this. It's so unfair. We, as a family, are going through something similar. My mum was diagnosed this week with a BT. She has an appt next week to discuss results of scans and what can be done. We're currently in some kind of cruel limbo at the moment. In your shoes - I don't think I'd tell him unless he asked. Best wishes to you all

Yes I know he'll start to get sleepier. That was his main symptom before the steroids kicked in. He was sleeping the day away. Could barely keep hs eyes open. So I hope thats how it progresses - it seems the kindest gentlest way. Who wouldn't want their Dad to die in their sleep?

Yesterday he said the radiation was stupid, the steroids were good enough. I changed the subject, not knowing how to respond. I guess he thinks the steroids will keep it at bay forever if he stays on them.

Last night I kept thinking "What if its all untrue? What if its a big mistake?" So so stupid. But the steroids are working so well that he's 100% normal yo talk to - how can it be real that half his brain is tumour when he's sitting there talking about his lunch??

Carbediem there are 130 different types of brain tumour so you could have a more optimistic diagnosis. I hope so.

My Mum had same diagnosis last year. The consultant told Dad it was months, but Mum never knew. She had a week's worth of radiotherapy. I think in her heart she knew it was pretty hopeless but it was never really spoken about like that. Mum got very confused. She had her last few days in hospital and went very peacefully and comfortably in her sleep 2 months later.

CarbeDiem when my dad was diagnosed with a brain tumour he presented as if he'd had a slight stroke. The hospital did full body scans to determine whether there were any other lesions anywhere else ie was the brain tumour a secondary to something else? That was all clear then he went to a specialist regional centre for a biopsy and grading. Waiting for the results was pretty awful as we felt in a limbo state. Knowing made what we were dealing with slightly easier if that makes sense.
Try and stay as positive as you can as many are benign.

Annarose knowing what's happening yet trying to carry on as normal when on the inside you know there's this terrible thing that will change life forever is so very hard to deal with.

You might be like me and start grieving immediately diagnosis is known. It's known as anticipatory grief as I realised after my dad died. I cried so much and was totally heartbroken. That's the only way to describe it.

That sounds familiar. I feel like I'm mourning him already. Utter dread and grief and fear. Then I have to go into the hospital and he wants to bitch merrily about the Physio! Its utterly surreal. I have a constant tension headache.

You've all been so kind. I have to be so poker-faced in real life visiting him every day that I haven't really spoken about it much.

Thanks Anna and Suze
We already know that it's a primary tumour. They told dm those results at the local hosp after they'd finished all the scans, just wouldn't say anything more about the actual tumour - those results have gone to the Neurologist/Neurosurgeon that she has the appt with.

It is a strange thing - people seem to just accept what is happening to them, they don't need to be told, and they don't fight it (at this stage, they do at an earlier stage). I was amazed how calmly my mum went through it. Not how I would have imagined it.

annarose how hard for you.I agree with throckenholt that some people do have an acceptness of what is happening.My Mum had a few tears with Dad then got on with treatment in a very positive way.previously she would get herself worked up about a smear test or avoid the dentist.Same thing when dad was diagnosed.The hospice at home nurses asked if they had any concerns as they both seemed to be coping too well with the fact they were seriously ill.I tnought the patient was always kept in the picture,Mum said she didnt want us all to know something she didnt and dad just takes each new bit as it comes along and has been more reluctant to talk about it.Cancer is a cruel disease.

Guys he's been peppering me with questions and I'm struggling.

He had a lousy weekend and has deteriorated a lot. His steroids have been increased to 24 mg! So he's become very frightened and worse, very depressed. His nerves are completely shot now. He's impossible to talk to as it's a litany of complaints non stop.

He's convinced he was fine before, that he could have carried on at home as normal, that nothing would have happened....at a push he concedes he may have needed to stay on steroids. He is utterly misremembering how he was before he came in. Refuses to acknowledge there was a problem at all.

So now he's asking me if he's ever going to get better, if his walk will ever come back, how big the tumour is, what the plan is.....

I can't tell him the truth! I can't! He only wants one answer - that everything will be fine. I keep saying I don't know, that he'd have to find out all that from the doctor. This is mental torture!