Lung cancer & brain mets

[Guineapiggiesmalls]

My lovely mum has had lung cancer for the last two years, and is considered stage four. Recently she very suddenly lost the ability to speak coherently, and was put on a high dose of steroids which initially fixed the symptoms however the underlying cause appears to be a mass on the brain which has increased in around 10 days. The speech problems are back, albeit intermittently

She has always said she doesn’t want to go into care, or a hospice which I’ve always agreed with, and so we’re making plans for her to move in. I know nobody can say for sure, but I wonder if anyone has experience of anything similar, what the prognosis could be?

I’ve called MacMillan already but cried too much and had to get off the phone, and we have appointments to see neurology this week.

My Mum was diagnosed Sept 09 with lung cancer. They removed a lung, then did chemo and some sort of trial. We were told it had spread to her brain in March (though didn’t seem to be symptomatic) and she passed away end of June.

She moved in with my sister. We had planned for a hospice when the time came, but she actually died suddenly early one morning and we found her collapsed, having been out with us the day before and (slowly) walking round a few shops. I’m sharing that because I wonder if she had a heart attack rather than die from the cancer itself.

im so sorry you’re going through this. It’s a cruel disease. Mum was 62 when she died.

I hope up you can get some support from MacMillan. Do they have live chat or email support?

We were told 6 months life expectancy once the brain melts had been discovered.
We got 3 good months; 2 weeks of decline and 2 weeks of fading away.

Thanks for your experiences - I know it can be rough to remember and share.

I really just want to do right by my mum, but also my own family (two younger children). It’s very tricky.

My dad's first brain symptoms were in December. Speech problems gradually got worse and became quite confused in last couple of months. He was looked after at home by my mum and was never bed bound until the last week when he went downhill very quickly and died in the May

I should say he'd been treated for lung cancer 2 years before but it returned

I'm so.sorry your mum is facing this cruel disease op.

MIL was diagnosed in the Oct, she stopped treatment in Dec as it was making her too unwell, bone mets found in March and she died mid-April. So 6.5months from diagnosis.

Her final decline was much quicker than we expected, we had been on holiday the week before and were told it would be fine to go, by the time we were back she was barely lucid and SIL had been doing her care which was too much for her really, we should have been there to help. I still carry huge guilt about going, for taking dp away from his mum in her final weeks. We had no idea she was so close to the end.

I hope your mum's path is as easy as it can be, it is a horrible illness.

Hello, so sorry to read what is happening to you all.
I work in a district nurse team and unfortunately it is a case of how long is a piece of string? However in my experience patients with the symptoms you describe can deteriorate very rapidly.
Hopefully the appointment next week will shed some light on the situation and then the ball can start rolling.
If they decide now is the time to start palliative care or end of life care, a plan should be put in place, which will include her wishes, where she wants to be at the end of her life and just in case medications will be put in place to ensure she is comfortable when the time comes, these may not be needed but they are to support you and her to make sure you are not distressed trying to source these nearer the time and symptoms can be controlled in a timely manner.
The GP, palliative care and district nurses will all be called in to support you all.
Where I work if symptoms are not complex it will be the district nursing team who will be able to arrange things, such as equipment referrals, referrals to OT/PT, completing fast tracks for CHC funded nursing care, support, supply pads or insert catheters for patient's dignity and referrals to Marie curie if night sitting needed, to name a few.
If you wish for her to stay with you consider where a hospital bed could be set up and again this all depends on how this will work for you?
For example some family's have a dining room which they will convert into the patients own space but still be integrated into family life. Some people want their loved one to be in the lounge or bedroom.
Bear in mind that the likelihood strangers will be entering the property throughout the day on a daily basis ie carers and/or nurses so think how that will disrupt your day to day life and if your little ones want to help or just be nosey. (Small children really don't bother us but there are some things that may not be appropriate for them to witness).
All the best and I really hope the appointment next week helps you to plan for the future.

Sorry for the essay, meant to say when they decline it can be very rapid so important it is planned and all necessary resources are put in place.x

My DH had LC than spread to the brain, luckily he was eligible for gamma knife on them, they managed to get them all - he lasted 13 months from then.

We had my mums appointment yesterday and unfortunately they said she wasn’t a candidate for a biopsy, and so there wouldn’t be any treatment. Though I’m devastated, I’m relieved the decision was made for her and we can focus on palliative care. The neurosurgeon said median survival was 2.5 months which is scary because she had her first symptoms at the beginning of October. I’m totally overwhelmed by the next steps, but I’m happy we can do the right thing by my lovely mum