end of life care

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hi everyone, i joined the forum a while ago and have really appreciated reading the discussions - thank you.

i now find myself at a complete loss as to what to expect next so am looking for any experience and thoughts about brain lesions and end of life care please.

to cut a long story short, my mum was diagnosed with nsclc (t4, n3, m0, left lung upper node) earlier in the year and after 4 rounds of chemo, was set to enter a trial (adscan). in a routine scan to confirm eligibility, we were told she has “multiple lesions” on the brain and when she pressed the doctor as to how long she had left, the answer was completely distressing (weeks to 3 months). i thought these days would come, but not this soon and i feel completely broken.

we are back at home with steroids and i’m just not sure what to expect next. she coped really well with chemo and apart from a bit of dizziness now and again, doesn’t seem ill at all. i just wondered if anyone had experience of brain lesions and what this might “look like” in terms of changes.

also, i’m shocked that the lesions were found at this stage, seemingly randomly. the focus has all been on her abdomen - CT scan, pet scan, biopsy. did anyone have a brain scan as routine?

sorry another also - has anyone had experience of changing care from one region / hospital to another please? it would make a huge difference to move her appts more local to me seeing as though she’s living with me now.

thanks so much for listening

FormerMember over 4 years ago

Hello Alfie

Welcome to us, I am sorry to hear of your Mum's diagnosis.

With brain lesions and changes, it all depends what part(s) of the brain that they are. As you say dizziness is one. Some people feel nauseous too and may throw up. Visual disturbances are very common. They tend to be very fatiguing too. There can be changes in themselves and speech and language could be affected, or confusion and quite often short term memory loss.

Here is a link to the Cancer Research website that explains symptoms and effects dependent on the areas of the brain. However if they are small multiple lesions, she may just get the general effects. Read with caution, you could read symptoms and then almost think they are all there, even if they are not, if you know what I mean and it can be upsetting to read too. I think the ones I have listed above are the likely ones you could see. Cancer reasearch's symptoms of brain tumours

Your mum should have been referred to a palliative care team, I think these may be the best people to talk to about your Mum's individual case and what you may expect. Or her cancer nurse specialist.

I think if people get brain scans depends on the individual circumstances and specific case. I had brain scans, and metastases were found. This was because I had a high grade NET cancer, so they knew the likelihood of spread was likely. Slow growing NSCLC probably won't have head scans as standard, unless any symptoms are reported.

For support for you, you could join the supporting someones with incurable cancer group too.

I am sorry that I do not have experience of changing hospital, but again you could ask her team or try the Macmillan help line on 0808 808 00 00 too, I have seen others mention moving hospitals and I doubt it will be a problem.

I do hope this helps a little.

alfie77 over 4 years ago in reply to FormerMember

hi gina, thanks so much for your kind and helpful words, and for taking the time to reply. that makes sense about scans, thanks. as the lesions were discovered as part of a trail, we haven’t yet seen the consultant so i’ll ask about macmillan care and transfer of care. i don’t think i’ll ever get used to the waiting...

i’m sorry that you’re going through your own health challenges and again, i really appreciate the reply. i saw a picture of your horse on another post - beautiful!

all the best. thanks

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