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Life-limiting illness

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Accept prognosis or argue?

5 replies

OllyBJolly · 22/02/2017 09:25

I'm wondering if I'm being unsupportive and should be more bolshy.

DSis has three brain tumours. She had surgery last year which was successful in that the surgeon removed most of two of the aggressive tumours (third can't be touched because it's on the brain stem. However, it's slow growing) There followed several awful months of radiotherapy and then even worse chemo. Just before Christmas we received the devastating news that one of the tumours was growing aggressively.

The consultant has suggested trying different chemo but has said all we can hope for is that this treatment will slow the growth, not stop it. Because of the location of the tumours, surgery isn't an option. There are limited chemotherapy treatments (apparently because brain tumours have such poor prognosis that it's difficult to attract research funding Angry .

DSis is asking me to seek out second opinions, and to pursue new treatments (found on Dr Google). I tend to think the doctors know what they are doing (care has been superb) but am I being too acquiescent? When I hear of relatives fundraising for treatment abroad and "fighting every inch of the way" I do wonder if I'm doing her a disservice.

Anyone been here?

OP posts:
TwitterQueen1 · 22/02/2017 09:28

Flowers for you and your DSis.

This is very difficult. Experience has left me feeling the doctors and surgeons do an amazing job and I trusted them implicitly. But your DSis obviously doesn't want to give up hope and it would be unkind to take that away from her.

I wouldn't be bolshy or ask for second opinions but I would maybe talk to her about online research that you are doing.

Not much help I'm afraid...

motherinferior · 22/02/2017 11:04

I would ring the brain tumour charities. Sadly, I think the doctor is almost certainly right - brain tumours are just awful; but ringing the specialist organisations for advice is a better option than just googling. Look up all the online info too from reputable cancer organisations.

I'm so sorry you are go

motherinferior · 22/02/2017 11:04

...going through this.

motherinferior · 22/02/2017 11:05

Also the limited chemo options are partly because of the 'blood-brain barrier' which protects the brain: in this case, not usefully so.

Poudrenez · 28/03/2017 16:24

I'm sorry you're all going through this OP. I can understand why you feel unsupportive, of course we'd all do whatever we could to save our loved ones. But it sounds like you trust the doctor's opinion and there's nothing wrong with that. When my brother was very ill (he later died) there were a couple of slim chances on offer, travelling overseas for pioneering treatments etc. Something told us it wouldn't work - my mother who is normally a very anxious, emotional person calmly resigned to it, she sort of 'knew'. I don't know how else to describe it... we still love him to bits and I don't think we made the wrong decision. From the sounds of it your sister understandably wants you to clutch at straws. I'm so sorry, it's dreadfully sad. Flowers

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