My lovely brother - stage 4 brain cancer - any experiences and advice please

[CloseYourMouthLynn]

I couldn't see anywhere else to post this. My brother is 40, with a lovely wife and 5 year old son.

About 3.5 years ago he was diagnosed with rectal cancer, we thought they'd removed it and he has a stoma, but then it spread to his lungs and liver. Various rounds of treatment later and quite recently it was looking more positive, with talks of him taking part in an immunotherapy drug trial and the tumours showing minimal growth.

Then yesterday, after a week of headaches and sickness, which a gp who clearly didn't read his notes and so prescribed him painkillers, he has had it confirmed that it has spread to his brain.

We are all beyond devastated and I can't stop crying about my lovely brother and the idea that
we actually might lose him to this horrible disease. He is being positive but obviously is aware how it will probably end. I stupidly have read all about it and keep seeing 6 months to live total in most cases. I don't live near to him or my family and my poor parents, and this is making it all the harder.

Does anyone have any experience of anyone with secondary stage 4 brain cancer who defied odds or what we should expect realistically?

Thank you to anyone who reads and replies.

Sorry I can't help but bumping this for you. Hopefully someone can come along with some advise soon.

*advice

I'm so sorry, OP. My lovely MIL lived 2.5 years after being diagnosed with metastatic brain tumours, so it's possible you have longer than you think - is he being offered treatment?

It is so, so shit. And sometimes it's a bit overwhelming because we often try and find some tiny bright spark when things are awful, and everyone around you will try to out of awkwardness, and so just know - it's okay that there's no upside. It's okay that it's shit.

My depressing but practical piece of advice is: change anyone connected to the situation's ringtone in your phone to something different than the default. Firstly cos you'll know when the call is important, and secondly because DH still flinches when he hears the default Samsung one now, after a collective 8 years of getting bad news about MIL while living far away and it is a trigger for what I think is grief related PTSD for him.

Love and strength for whatever comes next, OP

I am very sorry op. I read an inspirational story of an architect here in Ireland who survived this. I’ll go see if I can find his story

I have no experience of this type of cancer, but I have a lot of experience of metastatic breast cancer. I know of many women who have it spread into the brain, and there appear to be many treatments available to them.

I don't know how different it is for rectal cancer, but I will say don't Google any further, don't pay any mind to the prognoses you see online. They will be several years out of date. The treatments and knowledge available when they were published will be different to those available now. Also, sometimes they are only refering to a particular sub-group, but Google presents it as the blanket answer for everyone.

I hope there is a treatment your brother can try.
Wishing you all the best.

m.mixcloud.com/1032DublinCityFM/inspirational-people-with-liam-ryan-21st-january-2022/

Not quite the same as he had head and neck cancer

Thank you @chillydownwiththefiregang

Sorry about your MIL @housemaus. I do flinch everytime I hear the phone now.

It seems like medically we are still so far behind in terms of what we can do for cancer patients, it is just too clever. My brother was essentially on a watch and wait cycle after treatment which seemed to be helping, but he has never had a head scan routinely as part of his care plan, which I guess is down to cost. My dad is furious and is gunning for answers.

It's good to hear that there may be treatments available @thesparkthatbled, I guess we will have to wait and see what they advise. I think the cells have spread from his lungs. It's just so terribly unfair and I wish I could swap places with him.

Thank you @Eloisedublin123, I do like a success story and just hope that he can be one of them