Nobody is asking about prognosis for FIL's stage 4 glioblastoma

[PrincessBuggerPants]

What it says on the tin basically.

My FIL was diagnosed with stage 4 glioblastoma in November last year following six months of symptoms. He has had surgery and radiotherapy, and been told his tumour biomarkers show he won't respond to chemo, but not once has he discussed prognosis with his consultant. Apparently.

Obviously everybody else in the family has Dr Google'd it and seen prognosis is terrible (this form of cancer is known as the 'widow maker') and MIL and DH have discussed this between themselves. However, FIL has apparently shown no curiosity whatsoever about the prognosis and nobody will discuss it with him.

Each appointment happens and MIL states to DH they will be able to discuss prognosis at the next appointment, after the next round of tests or the next round of treatment. And it never happens.

I don't have a close relationship with ILs for various reasons and I'm hearing all this through DH. DH is well aware his father may not have long left, but doesn't want to base his understanding of this on Dr Google but is left with little choice and I don't know how to support him. DH isn't really talking about it much and hasn't filled me in on updates and is irritated I am asking questions/won't go along with waiting/ignoring.

Does anybody have any experience of this?

Hi @PrincessBuggerPants

I do know of someone with a very similar diagnosis, he was in his 50's when diagnosed. He lived just over 4 years, with no medical intervention other than the original surgery. His family managed to get some cannabis oil (the illegal stuff) and family are convinced that's what helped. Maybe worth looking into.

It's a shit time, sympathy's

I don't have direct experience of this but I do think you have to follow your FIL's lead if he prefers not to know. Many years ago I accompanied a close relative to a number of appointments which could have led to a diagnosis of cancer. The consultant was very careful only to give as much information as they asked for.

My neighbour has a terminal illness. She does not want to know how long she has left to live. Maybe your FIL does not want to know or wants to continue in the belief that he will get better.

A great number of patients, once they have been told they have X months to live tend to go down really quickly.

I think I would like to be in that camp if I was in that postion, carrying on regardless.

@onlyoneoftheregimentinstep so you think the consultants are going along with this?

I am surprised that consultants aren't providing more information about what the test results mean and I'm unsure if they really aren't telling him, or if FIL just won't engage with it. I don't really understand how he can have provided informed consent for the treatment he has had, if the potential outcomes weren't actually discussed?

However, FIL has apparently shown no curiosity whatsoever about the prognosis and nobody will discuss it with him.

That's not unreasonable or, in my experience, unusual. He doesn't want to know what his prognosis is likely to be. He may well have Googled himself and found that it's likely to be short, he may just have picked up from mannerisms or have some base knowledge, or he may genuinely not want to know either way.

You have to respect that, and follow his lead. The doctors will do the same, and only tell him what he wants to know. It's his health, and his right to choose how much he knows.

is irritated I am asking questions/won't go along with waiting/ignoring

That's probably not helping your DH, and if you want to support him, you have to drop this. Don't ask questions. He'll tell you when he finds out things. I'm a problem-solver by nature and I'd want to know everything and make a plan too, but this isn't something you can fix, and you have to take FILs lead. Be supportive by not asking questions, googling or pushing for information. Just look after your DH. He's losing his dad... there's little you can do other than generally look after him, support him and be there if he needs a cuddle/talk/cry.

All the best

My late husband was asked if he wanted to know, and he said no. I respected and understood that.
In my dad's case, the doctor gave him lots of openings to ask, and he very deliberately didn't use them. We also respected that.

in both cases, they well outlived the doctors' expectations (we discovered later). one of the doctors said that it's often the case with people who don't want the information. The brain is powerful.

I've just read the OP again. Seriously, leave your FIL and DH alone. They have to deal with this their own way, and you nagging to know stuff that is going to make no difference at all to the outcome, is just adding to the stress.

Sorry to hear what you are going through. Something to keep in mind is also that the cancer potentially impacts your FILs ability to either ask for or take on board information. My mother had L4 and took what she wanted from each consultant apt and wasn’t showing much interest in finding out what was going on or asking questions. She agreed that she would have a companion at each apt to take notes and that I could call the dr afterwards and get a clear idea of where we were at.

Well supporting your DH would be going along with what he wants to do about it. And if that is nothing, then that's fine. Bombarding him with questions about prognosis and treatment is not.

You may deal with news like that about yourself differently. But they are entitled to deal with it the way they want.

Or is this a reverse, and you are the one being bombarded with opinions on how you should handle it differently? Either way, step away from Google!

My father is terminally ill and has not asked about prognosis, nor does he wish to know. In fact he does not actually even want to admit he is terminally ill, more along the lines that he will have treatment for his ‘condition’ for the remainder of his life. He is carrying on living in his own infuriating and individual way, and so we are all going along with it. It doesn’t change what is going to happen if we know how long he has left, but it can have a huge effect on the person with the cancer. He’s just got back from one holiday and he’s busy planning another. He doesn’t want to stop and think about it possibly being his last one.

I think as they are the ones living with a terminal disease you have to let them do it on their terms. You don’t have a right to know anything about it. My father’s condition has a life expectancy me and my siblings have looked up, and he is currently passing that life expectancy figure, still looking reasonably well. Had we been given it as a number by the doctors we would have been very gloom and doom about it. But we are not hanging on to any figures and my father is happy with that.

My DM is dying of cancer at the moment and has never once asked about her prognosis. Her consultant has a policy of not telling people if they don’t ask. I imagine lots are similar.

Her consultant recently told her that she’s no longer treatable and needs to move to a hospice and she STILL hasn’t asked how long she has.

However, I asked to speak to him, he got permission from her, and he told me the current prognosis (weeks). I had practical reasons for wanting to know - she lives in another country and I need to organise childcare so I can go to spend time with her. Someone in your family may want to ask to speak to the doctors but be aware that it does put you in an awkward position with the ill person.

My husband was diagnosed with incurable cancer from the off. We never once asked the prognosis. We knew he would die from it but we didn’t want to know when, because, well, who actually knows. I know I would have put the date in my diary and waited for the death.

I knew that the average was 8 months. Dr Google told me this but DH’s cancer hadn’t looked at google and at 8 months he was working full time, skiing and living life well. He lived for 2 years and for most of that he was in a good place. A prognosis is a prognosis. It’s enough to know you probably won’t get better so why put a date on it because actually, nobody knows

This is not unheard of, your FIL may not wish to discuss prognosis with his consultant and/or share that information with anyone else.

DF and DM didn't want to know. It frustrating for me because I wanted to plan prepare and organise.

The worst bit was DM wanting to get PoA when it was far too late. I'd tried to organise it earlier but they wouldn't have it.

So long story short, it's normal.

It's all very well your FIL not wanting to know how long he's got left but has he got a will and a power of attorney in place? Does MIL have access to finances, information on his pension, mortgage, life insurance etc?
If not then it may leave a hell of a financial mess if he deteriorates quickly, and it may well be up to your DH to sort out. I would push him on this above anything else.
GBM is an absolute bugger and I wouldn't wish it on anyone. I do sympathise.

DF's was in the language processing bit of the brain, so we were scuppered from the start.

It's all very well your FIL not wanting to know how long he's got left but has he got a will and a power of attorney in place? Does MIL have access to finances, information on his pension, mortgage, life insurance etc?

You’d push a man for information he may not have or may have but doesn’t want to share. Power of attorney may not be required. Don’t assume every terminal cancer patient, old person requires it, they often don’t. Having said that, the FIL and MIL may have an arrangement, it really is nothing to do with the DH as harsh as that sounds. They may want to handle this alone and in their own way try to protect the DH.

DH isn't really talking about it much and hasn't filled me in on updates and is irritated I am asking questions/won't go along with waiting/ignoring.

It's really none of your business and you should not be hounding your Dh with questions. You won't go along with waiting? Who do you think you are? It's your fils decision to ask the question and maybe, just maybe he doesn't want to be told what he's about to go through or how long he has to live. Try having a bit of sensitivity and be supportive of how your inlaws and Dh wish to deal with it.

It’s up to him, but would assume he may have v little time.

I suspect he knows about the longer term prognosis but doesnt want to know the short term. Because beyond that they dont know.

We have just been through my Nan being in hospital for 2 weeks before passing away. It was pretty clear when she went it this was going to be the end result but at no point did the consultants say when it would be or what the actual prognosis would be because they simply could not give a definitive answer because there arent any

All he can do is make sure documents are in place and planned and that is it. Beyond that there is just no knowing because it is an unique thing

DH isn't really talking about it much and hasn't filled me in on updates and is irritated I am asking questions/won't go along with waiting/ignoring.

Why should your desire to know trump your FIL's (and DH's) desire not to know/talk about it?

Google Ring Theory, OP - it's 'comfort in, dump out'. You've got it the wrong way round.

Isn't this situation all about your poor FIL, not you?

My father had a brain tumour as well- a different sort - and it took them 6 months to diagnose it. By that stage parts of his brain was affected. He seemed perfectly normal, was still at work but the parts of his brain that controlled his emotions and any curiosity about his condition and anything else were affected. Just bits shut down slowly. It was a blessing really. Wasn't for us to push it. They gave my mother a vague prognosis when she asked but he didn't react at all to it. Wasn't for us to push it. There's always hope until there isn't.

It’s very, very difficult. Of course it’s terrible for the patient and his loved ones. But death is about those who are left behind, ultimately.

Some people go to their graves never coming to terms with this. Others are more prepared.

You can’t force someone to consider something they’re not ready for. As such, you need to plan for that. That’s your job, on you - not your FIL’s or DH’s as they seem committed to their choice.

See and accept it for what it is. Don’t rail against it. Be compassionate. It’s not about you.

Doctors will give the information necessary plus the patient asks for. Prognosis. Information is not necessary and many patients don't want it. I've known people die without ever asking, determined to fight even when DNRs were in place.
Some people really don't want to know