Offered palliative care only

[NJRV]

Dear all,

Writing to ask if anyone may have an answer to this:

My mum 76 years old who was very active and healthy, currently living in Chile deteriorated very quickly while I was visiting last Christmas 2023. Left body side weak so after an emergency visit to neurologist and imaging got discovered a brain tumour. She has a craniotomy on new years eve but tumour was partially removed. Biopsy confirmed GBM grade IV. She was transfered to be treated at a local hospital which the oncologists board decided she will have palliative care only. My dad said the oncologist didnt offered radioteraphy or chemioteraphy, he was so shocked didnt ask why. She is at home now with prescription of Keppra and dexomethasone.

Got second opinion on a private hospital and she got offered 10 rounds of chemio, but wasnt seen physically, just the imaging.

Does anyone know why in some ocassions cancer treatment is not offered? I am terrified to think she was left down by the system because of her age. She is currently at home, physio treatment organised independently from hospital. Her mind is not the same as befire, generally well, can eat and go to toilet by herself.

I live abroad so I cant be present at meetings. Any advise or clarification will help my anxiety

Thank you!

[Cranesbill]

Hello there,

So very sorry to hear about your Mum. My Dad is 76 in October and was diagnosed in June 2021. He had a craniotomy and 3 weeks of Radiotherapy with TMZ chemo and then had 12 months of TMZ. He was fortunate enough that his tumour responded well and has been stable up until March. The tumour has come back and over the last 10 weeks we fought for a second opinion as they only offered palliative care. I found out from his surgeon that he has a methylated tumour and he said there is more chance of it responding well to the chemo. I won’t go into further details but see if you can find out if it’s methylated and do some research on that.

Sending you lots of hugs as it can’t be easy not being with your parents.

[Snettisham]

Hi NJRV

I’m sorry to hear about your problems, it’s all very difficult. To answer your question I can only say that in my husband’s case he has had quite a few additional health problems after 3 rounds of chemo, (he only had a biopsy and RT)….his immune system is so poor. Been in hospital for over 4 weeks now. But we were told that if he deteriorated Intensive care wouldn’t have him which is down to future quality of life. They said if he was 86 and could walk as an example a mile they would be given preference over someone with an illness that is only going one way. So age as husband early 60’s not a factor in decision making in UK. I may not have phrased the above very well and I apologise.

Best wishes to you both

[MoorlandScene]

Hello NJRV,

I’m very sorry to hear about your Mum. I hope you can find a good way to cope. It must be very difficult to support your Mum and your Dad when you are so far away.

Medical teams shouldn’t base their decisions on age, though obviously they do triage patients.

A few years ago a close relative had brain surgery in his nineties because a) he was very fit, and b) there was a good chance they could remove the nasty thing that was causing the problems. He had the surgery and made a brilliant recovery. They didn’t write him off because he was older - they saw a healthy man with potential to live a good life in future, which he did. Thank you that wonderful team!

Currently my husband is a little older than your Mum and has a high grade untreatable multiform glioblastoma diagnosed via CT scan. He was fit and well prior to the symptoms which prompted the scan. He has been given less than a year to live.

The specialist team didn’t recommend treatment (other than steroids to reduce swelling), explaining that because there are tumours in more than one location, deeply embedded, they would not respond well to surgery or immune/chemotherapy. A single tumour differently located would have had much better odds.

The consultant neurologist also advised that treatments like that would be likely to have unpleasant side effects and involve many hospital stays.

My husband felt he should focus on quality of life and a palliative care pathway rather than spend his remaining time going back and forth on multiple medical appointments and generally feeling even more ill than with the tumour!

Just wanted to reassure you that medical professionals do/should weigh up the pros and cons but maybe, if you have niggling doubts and it would set your mind at rest, see if you can get a third opinion?

You’re probably already gathering information from reliable sources to read around your Mum’s particular condition that might help you ask some more questions.

A phone helpline or a local group might be something to consider, too, as you need support as a carer. Remember that you’re doing your best, even if it doesn’t always feel that way. ❤️

Sending you and your Mum lots of positive supportive wishes and hoping there may be somebody else on this forum (I’m new here) with some more concrete suggestions for you.

All the best.