BIL cancer and way forward

Im glad you find it helpful, I’m sorry if I seem unemotional. I am a scientist first and foremost. But also 5 years in to being a carer for a person with a brain tumour.

I think a lot of my emotion has been replaced by facts and figures, treatments and prognostics.
It’s a very hard road

I don’t think there’s a right or wrong answer here. There’ll be “what if’s” no matter what decisions are made.

Is his daughter aware of his situation? Have you asked her if she has any opinion on his care? I would want her to know, but be clear you aren’t expecting her to “step up” or have involvement unless she wants to. There may be a time when medical professionals will only consult with his next of kin & that would be cruel if it’s the first time she’s contacted.

What would you want if you were in his position? What would DH want if he was in that position? Or what would you do for a relative you really loved & had a good relationship with (just so you know it’s not feelings for him clouding your judgement)
Throwing money at health doesn’t always improve things.

If the outcome of any scans, treatment etc would not improve quality of life, then I’d prioritise comfort, care & pain management over further medical tests/intervention. & that’s what I’d hope my loved ones will do for me.

Sorry you are all going through this.

Prognosis without treatment is weeks to months. Most people understandably want to do something. Even though the aftermath is rarely worth it

Very likely yes, it wouldn't have been curative surgery. The life expectancy even with treatment is short.

That would be very common yes

High grade anaplastic glioma is a catastrophic diagnosis.

It's very unlikely there is more treatment for him.

Just to say, he sounds a bit like my brother, but a more extreme case. My sister and I found out recently that he and his wife now think he is ND, not least because all of his children have various issues. Kids are diagnosed, he is not…but it makes sooo much sense in retrospect. Looking back, we can’t believe we didn’t see it or ever suspect it. We thought he just made the worst choices and behaved in certain ways on purpose out of badness and we wanted nothing to do with him. It doesn’t really make a difference now, except now we can see him slightly differently as someone who didn’t understand the nuances, someone who couldn’t accept help rather than someone who stubbornly refused help, such as counselling, and that some of his bad choices were somewhat unintentional or at least slightly more understandable. It doesn’t magically take away all the hurt caused, obviously. Anyway the lens has shifted so we can actually bear to see him again and we can see that if we want him to behave differently, we need to tell him what’s expected, as an example.

I know it’s too late for any of that with your BIL but if he is likely similar, but never diagnosed, it becomes a sad story of a man who never got the help he might have benefited from earlier in life (times were different). It might just help you two feel more at peace (if it applies) by seeing it all through a slightly different lens, as it has helped our family. Apologies if none of that applies. Your DH has admirably gone above and beyond in any case. Best of luck💐

High grade could be grade 3 or 4. Grade 4 glioma behave slightly less aggressively than GBM. But still aggressive.
Grade 3 glioma would have a more favourable prognosis. However ALL gliomas regardless of grade have the ability to mutate to a higher grade including to GBM. They will all regrow. They can all be devastating in their outcomes and even the ‘good’ ones do not have a good long term prognosis. The treatments have horrendous long term side effects. Like I said previously it’s the worst cancer. It takes the person before they are gone. Removing all quality of life.
I think I would still want to know whether the progression in symptoms was due to radiotherapy damage or tumour progression. But it’s a very personal decision. I do also think that BIL should have the option if he is lucid enough to make that decision

In your shoes I would speak to the oncologist as the one paying the bills and ask for a frank, in person appointment. With any luck you may be able to come to a clearer decision. IME, which is limited here, when it's someone's life, the decision is never easy no matter how clear it is, because the guilt and resentment can be overwhelming.

You're clearly doing far, far more than most people would as these bills are huge. Your BIL has done himself no favours and is frankly very lucky.

My heart goes out to you, because this is such a tough card to be dealt. Be kind to yourselves.

Its hard as I only know from the UK perspective but it sounds like, from UK perspective, it would be too late for power of attorney as he would need to set that up prior to his cognitive decline. It would then be triggered at a mental health assessment if he was deemed to not have capacity. If there is no POA in place or no family members willing to take on that role, here in the UK it would go to a Best Interest decision so a clinician / social worker would make those choices from him as part of a multi disciplinary team. Do you have that sort of arrangement in your country. If so you can ask for a mental capacity assessment and declare that you want the state to act in his best interest.

People knock our NHS but I many of the systems, processes and governance we have in place (beyond medical care) to ensure agencies work together on behalf on vulnerable individuals wouldn't exist in the same way if we didnt have a national health service. Obviously people slip the net and there are constraints but on the whole it works.

@SweetSunshineSA If it is stage 4 then it is called Glioblastoma, from what I can see the stage 3 is pretty bad. Stages 1/2 are the better outcome levels . This has a detailed explanation-

Stages of astrocytoma

I think quality of life is everything. For myself, I’d actively want no treatment if it made my quality of life worse.

My mother had a brain tumour, in her late 50’s. She was put through endless scans, tests and an operation that took 18hrs, then radiation therapy. Unfortunately it was so aggressive she died only 8 weeks after the operation. It still haunts me the way she was put through so much, with hindsight she’d have been so much better off left alone with pain relief.

You and your DH are going above and beyond for this man. Ultimately he is not your DH's responsibility, even if your DH feels that way.

I'm infuriated by the posters who are being so critical of you and saying things like 'you clearly don't like him'. Frankly, given the information about him (and you've said there's more, that you're not revealing) who would like him? But despite that, you're paying a vast amount of money to keep him alive and cared for. That's pretty saintly of you and he's incredibly fortunate in that.

If he'll let one of you go to his next appointment so that you're fully informed, that would probably help you. But honestly, given the prognosis, I'd question just how much you should intervene.

For me this is the key point you need to know. Glioblastoma is horrific. It’s the most aggressive brain tumour (I think it’s the most aggressive cancer overall?). If it was that then whatever they think they have caught will be back very shortly. As I said all four people I knew were gone in 2 years. If it is this then he just needs comfortable care.

Astrocytoma - as far as I am aware - can have a much better outcome, it’s a very different beast. This could potentially be treated reasonably successfully.

I don’t think you need a new scan - you need to confirm the original (tumour) diagnosis.

Don't be hard on yourselves. I am in this position with my Mum it is really hard.
I think take a step back from the detail. What do you think ultimately is in his best interests?
Is it further treatment, likely painful and distressing with no quality of life?
In your shoes I would take action to see a medical report. Then make a decision/protocol and stick to it.
With my Mum, I have said anything that stops pain is OK. No resuscitation and no trips to hospital. I did agree recently to covid and flu jabs cos I think that's being responsible to other residents and staff.
So I frame everything around "what will improve life today"

Capacity most certainly is subjective in the UK. I have my mothers’ LPA and there is a clear directive that capacity to understand and consent can fluctuate, and that in each decision l make for mum, l must involve her as far as possible and ensure that the decision and consequences are explained to her to the best of her understanding. l tend to delay the bigger decisions wherever possible so that when she has lucid periods she is more involved. Capacity is not black and white, or a matter of overriding the person involved as incapable of rational decision.

OP has also explained in detail that it would cause BiL distress to have his prognosis spelled out to him. What purpose would it serve to introduce that distress into already awful circumstances, given the need to act in his best interests ?