BIL cancer and way forward

[SweetSunshineSA]

I have name changed for this as I am a long time poster but have never spoken about this part of our lives in detail as its not something we center our lives around but its there nonetheless.

There is a lot of detail to the this (as its a lifetime) and I cant possibly tell the whole story without writing a novel, so please ask questions if you feel they are relevant and excuse me if I dont cover all the information upfront. Also, we are not in the UK.

My DHs brother, my BIL has not had a very productive life as an adult. He hasnt held down a relationship or marriage for longer than two years, is generally a difficult character with strange ideas, he has been financially reckless to the point of almost living on the street and has never looked after his health. My DH wouldnt consider their relationship close but if you had to ask my BIL he would say that they are. Its a strange dynamic of a younger brother being the one who has always looked after the older brother due to his bad decisions and inability to 'grow up'. My BIL would say this out of love but my DH would say it was out of obligation. Neither of their parents are alive anymore so they are each others only immediate blood relations (besides for kids). My BIL has a daughter in her early twenties from a short marriage.

My BIL was diagnosed with a brain lesion a few years ago which was causing seizures, he was on medical leave from work (he was employed by us prior to this, but this is another story) and we discovered that he was living in a flat in town but had gambled away his entire insurance payout and sold all his belongings and was sleeping on the floor. We uplifted him and placed him in a residential home / care environment where got a roof over his head and 3 meals a day at our expense. His health deteriorated and we took him to the doctor and the lesion had turned into a brain tumour (grade 4 aggressive, Im not sure of the pathology). He underwent a resection, they removed the tumour and he had chemo and radiation. He returned to the care facility but is now in frail care as he is not coping with normal day to day life. The tumour itself has caused brain damage and his cognitive function is impaired. His motor skills are getting worse and worse. He is struggling with bowel control. My DH speaks to him once a week on the phone and I get updates from the nurses at the facility. All his care, medical etc are paid for by us at a fairly large expense but we can afford it luckily.

My DH is struggling with the idea that his DBs life is effectively in his hands and he has to make decisions about his care and well-being. Obviously, if the relationship had been close and 'normal' then I think he would feel different. We (my DH) have to now decide whether we take my BIL in for follow up brain scans. We have been told that the tumour will likely reappear in the next few years after the surgery (its been a year now), he has had one follow up scan which was clear. We dont have all the medical info as we havent always been involved in his oncology appointments and have struggled to get doctors to communicate with us when the patient is an adult himself so the messages we have received have been mixed, ie some say they would operate again if it reappeared, others have said they wouldnt.

We have noticed in the last few phone calls and conversations with his carers that his condition seems to have gone downhill again. What do we do? Do we go back to his medical team and have scans so we know what is going on inside his brain? Do we leave it and let a very aggressive cancer take its course? His quality of life is pretty rubbish and I dont see it improving. We have had to tell the care home to not let him out anymore as he is catching taxis and ubers at his free will and its not safe outside of the facility for him My BIL wouldnt be able to understand this conversation if we tried to have it with him.

I feel like Ive left out a whole lot of details which make the question sound quite callous and uncaring. What do we do?

I read the pathology report when he was in hospital and then I did a deep Google dive at home and have confused myself.

I want to say glioblastoma or astrocytoma. Definitely high grade. And we definitely had a discussion with a doctor of duty who said that it would almost certainly return.

There was a follow up on discharge from hospital and then another 3 months after with a scan and we were told that they had gotten most of it out and he was in the clear. This was 6 months ago.

It is. And yet...

We are definitely the need to know type and that’s possibly what makes this so difficult because … do we need to know?

He is definitely a head in the sand kind of guy who left a known lesion until it became a tumor because he was terrified.

His daughter is not much of a thinker. She wouldn’t have researched anything and won’t be considering that there is a health calamity in our near future. But it will all be drama when it’s here.

OP this sounds like a horrible situation all round. I agree with other posters that you need to hand it firmly over to the medical team to recommend what ever they see as best.

This is why people should make it clear what they want to happen in these situations.
POA can only be gotten when a person is deemed of sound mind.
What does your bil want to happen?
Would he rather live longer at any cost- health wise and financially? Or have a more fulfilled but shorter life?
Lots of people would rather die sooner. We don’t keep our beloved pets alive at any cost do we?
Dh and I have specifically stated that neither of us want to live a life riddled with dementia, we deem it unfair on the surviving spouse and our children.
Op- maybe leave your bil to make up his own mind. I have no idea how this works outside of the UK.
In the UK unless you have made provisions, then you are kept alive.

That was actually going to be my question- is the SA private system one where someone with money would be offered more and more treatment options because they exist? I don't know the first thing about healthcare there myself.

Not much to add OP,, other than you have my sympathy. I also have a family member dealing with cancer in South Africa. Even with private medical, it is immensely complicated. There isn't really a joined up system where a scan automatically results in next steps referral and someone makes a decision or gives uou options.
Each scan/surgery/consultation tends to be separate with consultants not talking to each other and they all tend to be strictly limited in what they do because everything done is strictly itemised so it can be claimed from the insurer. You have to chase up everything.
It's really hard to find someone who'll look at the whole picture and say 'this is what's happening.'
People in the UK have little idea of how hard it is to get a clear picture of what is happening and your options.

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 ?

Yes definitely but you have to be proactive about it. Nobody is going to come and find you and do a wellness check on you.

Currently he is in a care home being cared for and having his basic needs met. It would be up to us to say ‘it’s time for a follow up appointment’ and arrange it.

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"

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.

Thank you. I’m going to see if I can find that info.

Edit to add. Just gone through my messages and I told my mum at the time that the notes said high grade anoplastic glioma…

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.

@Needlesnah ive just ChatGPT high grade anaplastic glioma and it seems a bit more complex than that as a diagnosis.

I think we will need to go to the oncologist for clarity.

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.

@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

@Needlesnah also found the last mri report which says ‘history of glioblastoma’ … so as clear as mud then. 😂

And a note after some medical phrases ‘this would be concerning for some progressive tumour’

This was 6 months ago.

I think we need medical advice. My husband is on the phone to our GP currently.

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.

I wonder if there is a medical test for quality of life. We are struggling to differentiate between what we would want for ourselves and what is ok for someone else.

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.

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

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 anaplastic glioma is a catastrophic diagnosis.

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

So even without knowing it is likely the tumor has returned 12 months post resection?