Active discussions

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

BIL cancer and way forward

157 replies

SweetSunshineSA · 30/10/2025 06:18

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?

OP posts:
DabOfPistachio · 30/10/2025 09:01

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.

NikkiPotnick · 30/10/2025 09:01

SweetSunshineSA · 30/10/2025 08:48

I stated that in my OP.

For some reason posters seem to skip over that detail. I understand my location is relevant to practical help but I think I perhaps need more opinion on the cancer itself, the likelihood of more intervention being useful etc. to help us decide on a way forward.

I would hate to believe that private healthcare is profit driven and the oncologist would push forward with more scans on this basis…

Show quote history

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.

Sparklesandspandexgallore · 30/10/2025 09:00

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.

stichguru · 30/10/2025 08:59

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.

Original poster
SweetSunshineSA · 30/10/2025 08:58

Mumofteenandtween · 30/10/2025 08:54

I agree with this. More information will help you make decisions. Not just about how long this will last for but whether it is likely that pain will become problematic soon and you will need to scream and shout to ensure that it is managed properly.

I guess the other side of the coin is if it is likely that the scans will cause extreme distress.

I should also add that I have what I would call a “scientist mindset”. I want - even need - to know stuff. If you put a button on a wall with a sign saying “do not press” then I will be desperate to press it to find out why I am not supposed to press it. So my advice will be biased by my own personality. But what is your personality? And your husbands? And his daughters? And most of all - what is his? If he could have made the choice himself would he want to know everything?

Show quote history

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 posts:
NikkiPotnick · 30/10/2025 08:58

FaitesVosJeux · 30/10/2025 08:46

It's right there. In the OP.

"Also, we are not in the UK"

Show quote history

It is. And yet...

Original poster
SweetSunshineSA · 30/10/2025 08:55

Needlesnah · 30/10/2025 08:52

Those mentioned in my previous post all had stage 4 glioblastoma. Do you have any records of the initial diagnosis (for the tumour, not the lesion)?

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.

OP posts:
Mumofteenandtween · 30/10/2025 08:54

Helpwithdivorce · 30/10/2025 08:26

I feel like I’m somewhat of an expert in brain tumours (yay cancer)
A grade 4 tumour carries a prognosis of 12-18 months. However younger people can live longer 5 years maybe a little longer.
I think I would pay for the MRI to check if the progression in his symptoms is due to tumour growth or radiation damage as both can present the same.
However radiation damage will not cause his life to end more quickly. He will just suffer for longer becoming increasingly disabled and unable to function.
Tumour progression will end his life more quickly. If you knew this. It may enable your neice to visit her father. For people to say their goodbyes? For you to know how much longer this is going to go on for?
I get why you think there’s no point. But personally I would want to know how much longer I’d be living in this hell. Because that’s what brain tumours are. A living hell. Honestly I think there are no worse cancers than this one

I agree with this. More information will help you make decisions. Not just about how long this will last for but whether it is likely that pain will become problematic soon and you will need to scream and shout to ensure that it is managed properly.

I guess the other side of the coin is if it is likely that the scans will cause extreme distress.

I should also add that I have what I would call a “scientist mindset”. I want - even need - to know stuff. If you put a button on a wall with a sign saying “do not press” then I will be desperate to press it to find out why I am not supposed to press it. So my advice will be biased by my own personality. But what is your personality? And your husbands? And his daughters? And most of all - what is his? If he could have made the choice himself would he want to know everything?

Needlesnah · 30/10/2025 08:52

Those mentioned in my previous post all had stage 4 glioblastoma. Do you have any records of the initial diagnosis (for the tumour, not the lesion)?

Original poster
SweetSunshineSA · 30/10/2025 08:51

Comtesse · 30/10/2025 08:45

Whatever decisions are being made, I think it would be appropriate / important to involve your niece at every step, assuming she wishes to be involved.

We do.

She does her best within what she is capable of. I know her fairly well and I feel she could do better but I have to accept that she would not be capable of making such grown up decisions and so it would be unfair to ask her to do so.

OP posts:
YourJoyousDenimExpert · 30/10/2025 08:49

It all sounds very tough for you and your DH. It is clear you are trying to do the right thing for BIL and have borne huge financial costs which you are not obliged to.
There’s been some queries about Mental capacity - but even where it’s assessed - there can still be issues. For example in the UK - if someone has capacity, they are allowed to make a poor decision- which sounds like your BIL in the past - and possibly now. And then others have to pick up the pieces.
Hope you are able to get useful advice from the Oncology team so you can decide your next steps (if any).

FaitesVosJeux · 30/10/2025 08:48

And anyone posting here saying shit like 'You clearly don't like him...' - please STFU.
Nobody is obliged to like anyone whether related or not. The BIL sounds pretty unlikeable tbh.
Lastly - if you don't understand how the care system works (or more appropriately doesn't work for the vast majority) in South Africa you should probably refrain from judgemental comments and assumptions.

Original poster
SweetSunshineSA · 30/10/2025 08:48

NikkiPotnick · 30/10/2025 08:43

OP, might be worth asking MN if you can amend your original post to specify you're not in the UK? Otherwise this thread is just going to produce a stream of people who assume you're in our system.

I stated that in my OP.

For some reason posters seem to skip over that detail. I understand my location is relevant to practical help but I think I perhaps need more opinion on the cancer itself, the likelihood of more intervention being useful etc. to help us decide on a way forward.

I would hate to believe that private healthcare is profit driven and the oncologist would push forward with more scans on this basis…

OP posts:
Needlesnah · 30/10/2025 08:47

NikkiPotnick · 30/10/2025 08:43

OP, might be worth asking MN if you can amend your original post to specify you're not in the UK? Otherwise this thread is just going to produce a stream of people who assume you're in our system.

Wouldn’t make that any difference if she was clearer - I see too many posters on other threads, that seem completely incapable of reading anything correctly in an original post as it is… OPs name already indicates which country and she states she’s not here anyway

FaitesVosJeux · 30/10/2025 08:46

NikkiPotnick · 30/10/2025 08:43

OP, might be worth asking MN if you can amend your original post to specify you're not in the UK? Otherwise this thread is just going to produce a stream of people who assume you're in our system.

It's right there. In the OP.

"Also, we are not in the UK"

Comtesse · 30/10/2025 08:45

Whatever decisions are being made, I think it would be appropriate / important to involve your niece at every step, assuming she wishes to be involved.

NikkiPotnick · 30/10/2025 08:43

OP, might be worth asking MN if you can amend your original post to specify you're not in the UK? Otherwise this thread is just going to produce a stream of people who assume you're in our system.

Corneliafunk · 30/10/2025 08:42

Not quite the same, but when I had to make decisions about some treatments for my Mum who had had Alzheimers for many years, I phoned and spoke to the Alzheimer’s Society. From them I received independent support that my decision making was reasonable and was not focused on ending life or saving money - it was truly the best thing for Mum. This gave me peace of mind. Is there a relevant community organisation you could connect with in South Africa for a similar purpose?

Mulledjuice · 30/10/2025 08:38

SweetSunshineSA · 30/10/2025 07:18

You clearly dont know much about where we live.... Ill forgive you.

Id love to have the luxury of a state that assists with these things but unfortunately the reality is that if we hadnt intervened when we did, his landlord would have kicked him, he would have lived on the streets for as long as he could have survived, he would have been taken to a doctor to discover the peach sized tumour and he would be dead. Even if he had managed to find his way into our govt health system they probably dont have the facilities to treat him and they would have begun palliative care 2 years ago.

Show quote history

It's not about assistance! It's about us having checks and balances in the UK which mean that a patient can make their own care decisions unless they have been assessed not to have capacity.

"Capacity is subjective I guess when you are dealing with someone who has effectively has a traumatic brain injury." not in the UK and most of Europe I imagine - it can and must be assessed.

Brain injury doesnt just occur as a result of the tumour. Radiotherapy and surgery can cause cognitive decline.

I agree wholeheartedly with PP including @AnnaMagnani that you need an assessement of capacity and that the doctors need to advise BIL/DH on prognosis and options.

Rosscameasdoody · 30/10/2025 08:36

RozGruber · 30/10/2025 08:06

Exactly! You seem to have decided it’s up to you and DH but legally it’s probably his daughter’s decision. It doesn’t even sound like you’ve involved her at all. Regardless of what you presume about your BIL and his daughter she has the right to be involved.

And yes of course you get the scans! You have no idea what the possible diagnosis and treatment options might be. Maybe it’s totally unrelated to his prior issues. You never know. I find it hard to believe you are really “good people” if you are considering letting this man continue to suffer just because you don’t want to pay to find out what’s really going on. If you couldn’t afford it that might be different but you’ve clearly stayed multiple times that you can and thay “it’s not about money” so I can’t fathom your thinking here.

If you told us what country you are in which of course you never will even though it’s hardly outing to identify an entire country people might be able to help you find resources to help fund or provide care for your BIL. But you won’t do that either I’m sure.

Show quote history

What a horrible post. OP disclosed what country she was in some time ago. She has also said several times that there are no useful diagnosis and treatment options that would be revealed by the scan because they already know that the cancer will return and his quality of life won’t be improved by surgery. In the UK a scan wouldn’t be offered if there was no value to it. Not so in private healthcare because there is profit to be made. So OP would be spending thousands to confirm what they already know - money that will be better spent on his care.

And money/funding isn’t the issue here - OP has already explained the healthcare system and there is no crossover between state provision and private care - it’s either/or. Maybe read and understand the updates before posting simply to put the boot in.

Original poster
SweetSunshineSA · 30/10/2025 08:33

Helpwithdivorce · 30/10/2025 08:26

I feel like I’m somewhat of an expert in brain tumours (yay cancer)
A grade 4 tumour carries a prognosis of 12-18 months. However younger people can live longer 5 years maybe a little longer.
I think I would pay for the MRI to check if the progression in his symptoms is due to tumour growth or radiation damage as both can present the same.
However radiation damage will not cause his life to end more quickly. He will just suffer for longer becoming increasingly disabled and unable to function.
Tumour progression will end his life more quickly. If you knew this. It may enable your neice to visit her father. For people to say their goodbyes? For you to know how much longer this is going to go on for?
I get why you think there’s no point. But personally I would want to know how much longer I’d be living in this hell. Because that’s what brain tumours are. A living hell. Honestly I think there are no worse cancers than this one

Thank you. This is the kind of debate I was hoping for.

I will read this to my husband.

OP posts:
Original poster
SweetSunshineSA · 30/10/2025 08:32

Staringintothevoid616 · 30/10/2025 08:24

Given your BILs nature and condition is he likely to find the scans and any subsequent treatments distressing? If so no I wouldn’t do anything to delay the inevitable.

it sounds like you have done a lot for him. You’re not duty bound to do anything.

That is a good point. When he had capacity he was terrified of the doctor and anything life threatening. Partly the reason he left the lesion to become a tumor, he didn’t want anyone digging around in his brain (his words). It is ironic for someone who has otherwise been very reckless with his health.

It’s not up to me to judge his quality of life as I can only judge from my perspective and I would hate to be in nappies, in a care home, not knowing what day of the week it is. But he is not in pain and seems otherwise content. If he knew that the cancer would return he would probably be stressed out.

OP posts:
Sharptonguedwoman · 30/10/2025 08:27

Mayflower282 · 30/10/2025 06:23

It sounds like you are in a really difficult spot, having to think about decisions without all the information. I think you need to liaise with his medical team, find out more info about prognosis and treatment options, get power of attorney sorted out, and have open discussions about what his future looks like, pallitive care at some point etc.

Nails it. What a difficult situation to be in.

Helpwithdivorce · 30/10/2025 08:26

I feel like I’m somewhat of an expert in brain tumours (yay cancer)
A grade 4 tumour carries a prognosis of 12-18 months. However younger people can live longer 5 years maybe a little longer.
I think I would pay for the MRI to check if the progression in his symptoms is due to tumour growth or radiation damage as both can present the same.
However radiation damage will not cause his life to end more quickly. He will just suffer for longer becoming increasingly disabled and unable to function.
Tumour progression will end his life more quickly. If you knew this. It may enable your neice to visit her father. For people to say their goodbyes? For you to know how much longer this is going to go on for?
I get why you think there’s no point. But personally I would want to know how much longer I’d be living in this hell. Because that’s what brain tumours are. A living hell. Honestly I think there are no worse cancers than this one

Lobelia123 · 30/10/2025 08:25

OP, this is a hugely complex and difficult situation. I really feel for you and think you have expressed yourself as calmly and rationally as you could. Please dont be hurt or offended by all the kneejerk reactions of people horrified that you would not be doing 200% in your power to get scans, have operations and tie yourself in knots to care for someone who has a deteriorating quality of life. I will only add to the thread from my own personal experience with my late mum, that extending life at all costs is not always the right or kind thing to do.

Swipe left for the next trending thread