Can anyone explain to me why Sally Roberts doesn't want her son to receive radiotherapy?

[Catriona100]

I watched her interview on breakfast TV yesterday morning, but I am still none the wiser. It must be hard for someone without media experience to explain themselves in a soundbite.

The issue I have with her attitude is that the proposed treatment is intended to be curative rather than palliative. If it were palliative only I would be with her 100% and say that she has the right to determine end of life care. But all the evidence presented in court suggests that both the mother and the hospital team are looking at curative options. The difference is the hospital team have an evidence base for their plan and she doesn't. There seems a very real chance that her view would result in the child's unnecessary death. She has already delayed treatment. I am sure she wants the best for him and is facing a terrible situation BUT I also think she's wrong. I think it was very unwise to bring grandchildren in to the discussion - makes it seem all about her when I think she is genuinely struggling to try and help her son.

Leaving - she isn't saying don't do radiotherapy because I want him to die in peace. She's saying don't do it because I don't think it's needed.

Because she is fucking petrified that some doctor called radiotherapy 'frying his brain'.
And generally fucking petrified, I imagine.

Poor woman. :(

LeavingNewYork - from what I can see about this case in the press, he would have a 70-80% chance of being a long term survivor if he has all the treatments. Without the RT, he won't survive. Sounds like a pretty good balance of risk to me, and the RT is not highly unpleasant as a treatment - yes, there are side effects, but he's of an age where he would not suffer severe IQ detriment, and every step is taken to minimise the side effects by careful radiation planning

If it life or death then the blood transfusion cases make it clear you can ride rough shod of parents' wishes. If you are just tinkering with chances say 80% not 60% I think the parent should decide.

If the decision is we let the child live and it will be a vegetable then I would prefer the parent to be able to take the choice.

They are always some of the hardest moral issues which exist.

I think it is 100% certain that if he has radiotherapy he will stop growing and never grow again and his IQ will be rendered so low he is unlikely ever to work and all kinds of dreadful things. It is not had radiotherapy and you are 80% likely to be totally cured,. It is have radiotherapy and we will render you a disabled person for life and yes it might improve your chances of life. Tough choices for judges and parents.

Xenia - it is not that he will never grow (he will not be as tall as he would have been, yes, but his long bones will still grow well), and his IQ will not be terribly low - it won't go down from where it is, but obv having a brain tumour does have an effect generally, and the surgery, chemo and rt all contribute to this.

I used to be very involved in the rt for medullablastoma patients as it is technically challenging, and the oncologists do not take any of the treatment decisions lightly, and have the patients and families interests first and foremost.

xenia you are obviously as knowledge about this as te boys mother.

He will grow!
He will not be a vegetable!
He will at least have a chance of surviving!

Bloody typos!

Then again you had lots as well so I don't feel too bad.

Sorry Xenia but you are talking utter shite. It is those sort of totally uninformed pronouncements that terrify people about radiotherapy.

My DS had the same brain tumour - medulloblastoma - as this boy. He had neurosurgery and then 33 days of radiotherapy to his head and spine. We were most definitely told it was curative and not palliative, the same as Neon's DM was told. And we were warned about all potential side effects. We opted for DS to have the treatment.

He didn't stop growing at all but he needed extra help and had growth hormone treatment for 2 years to ensure he met his normal height prediction, which he did. His IQ certainly wasn't rendered so low that he will ever be likely to work either. He suffered short term memory loss and slight and temporary types of dyslexia and dyscalcula for a couple of years, which were overcome by additional support at school and at home. He graduated with a BSc Hons degree last year and works. And lives a totally normal life. You wouldn't even know he'd been ill unless you saw the scar down the back of his head.

And I know from seeing his contemparies at the Long Term Follow Up Clinic and through our involvement in a charity supporting paediactric cancer research that he is very far from being the only one to be treated so successfully.

DS was treated in 1995/96 and I know that treatment regimes have improved very much since then. Chemo was experimental for brain tumours back then and it is now standard, surgery techniques are completely different etc.

I can understand the woman is terrified. Show me a parent with a DC with cancer who isn't and I'll show you a liar, but I know my DS wouldn't be here today without having had radiotherapy. Yes it's a risk but sadly the odds aren't in Neon's favour without it from what I've read.

MrsPoglesWood - fantastic that your son is well and thriving!

I think the only thought I have on this case is that I'm so incredibly immensely grateful I'm not walking in her terrifying shoes right now. And hope to all things to hope to that I never will be.

Thanks BasicallySFB and yes, no parent should ever, ever have to go through this. I dream of the day when Paediatric Oncologists - and all Oncologists - join the ranks of those jobs that don't exist anymore because there is no need. Like Knocker Uppers, Lamp Lighters etc

I hope for that too. Not a job I could ever do, and as a parent I pray I'll never be in that situation. My heart goes out to her and all parents facing that horrific path x

For me yes, I'm not pretty, I'm not sporty, I can't draw or paint or play a musical instrument, but I am clever in a boring conventional pass school exams way.

That is totally intrinsic to who I am.

Maybe even more so to my incredibly clever, geeky, learn all there is to know about anything that crosses his path DH.

We would both be depressed and frustrated beyond measure if we had enough mental awareness to know we couldn't do what we used to.

Ageing is annoying, but a step change would be really hard.

In their quite different ways my DDs are their parents children.

I think my conventionally academic, very competitive DD2 would find it very very hard.

DD1 is dyslexic and already uses her very quick bright mind to work round her problems. So long as treatment left some of that intact she is far and away the most resilient of any of us.

What ever way you look at it, it's not something any of us would ever wish to face.

She may well write a book about the traumatic experience she has been through, Not many women go that far in the courts

MrsPoglesWood your post was inspiring and made me smile today.

Can't believe you said this Startail: You can give a six year old intensive treatment, but if the cancer recurs when they are a teen that is surely worse than them dying originally.

Who are you to judge what type of life is worth living?

Perhaps those intervening years were full and memorable and enjoyable.

We can't make decisions in the here-and-now based on maybes in the future. Maybe the cancer will return in his teens...this is not a good enough reason to refuse treatment imo.

I also get your point about being a person who values intellect highly...but faced with death or some, perhaps at most, moderate level of IQ impairment I can't believe you really would choose death. How old is this boy, seven? I can't believe he would even be capably of consciously watching his IQ points drop, not doing academic things he used to etc, not to any great extent - not like a teen or adult.

Touch wood, I've never experienced serious illness either HeyHo. But I find this attitude difficult to digest however. I can't believe she's really thought about what she's typed tbh.

Thanks NuclearStandoff that's really nice to hear

Startail - my 9yr old ds has just completed his treatment for medulloblastoma, including 30 days of radiotherapy and 8 cycles of chemo. If his disease recurs I will thank my lucky stars that we had him here for as long as we did.

Oh and what LeBFG, Stinky and HeyHo said. When your DC has a life threatening illness and death is a very realistic possible outcome the very last thing you give a shit about is the loss of a few IQ points or how a previously very academic child might adapt.

I hope Startail is never, ever in the position to find that out .

The judge who took the recent decision to order treatment was highly critical of her research (although not her personally). Not only did one of the alternative 'experts' she presented have no medical background, let alone any oncology specialisation, he was unable to actually spell the name of Neon's cancer correctly. While she almost certainly loves her child, she's a woo-woo merchant with a paranoid fear of Big Pharma. Unfortunately docks leaves and crystals won't cure a brain tumour.

Stinkyfeet I wish you and your DS all the luck health in the world.

However, I still remember how relaxed I was thinking I was going to die when I was in a car accident as a young child.

Quite different to my adolescent feelings.