Can anyone explain to me why Sally Roberts doesn't want her son to receive radiotherapy?(54 Posts)
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.
From what I've read/seen it's down to the tiny possibility that there could be side effects which may or may not have long term implications.
Happy to be put right if I'm wrong.
Because she read on the internet that magic beans can cure him without the risk of him being unable to give her grandchildren.
Although the mother agrees that he has cancer and she agrees that he needs treatment, she thinks that there are other ways to try to cure her son.
She was talking yesterday about hyperthermia, but the way she described it, it is something used in Germany to support recovery from radiotherapy, not treat cancer. So, it didnt really make sense.
Then she made some comment about the possibility of not being a grandmother... and then the interview was over. hence my soundbite comment.
I can't believe she'd put herself and her son through all this, unless she had something more substantial to say.
Radiotherapy is a very scary concept to some people. Thankfully the courts have taken the advice of the oncologists, who are prescribing him radiotherapy because it's his only chance of survival or at least tumour control.
because she would apparently rather her son die than have a reduced IQ/be infertile.
Hyperthermia used to be offered here in this country (in Hammersmith hospital) in conjunction with radiotherapy. I think largely it was found to be of little benefit except in the cases of certain breast cancers (fungating).
If the oncologists thought this child could be cured with hyperthermia then they would seek to have him treated in Germany where it is sometimes offered. But again, it is in conjunction with radiotherapy and not stand alone.
it must be awful for her. She called him "Neon" so i am wondering if she's a bit new-agey??
But whatever, she can't be that stupid to let her son die rather than have a chance to live but risk a lower IQ??
"I can't believe she'd put herself and her son through all this, unless she had something more substantial to say."
Thing is, all too often we attribute the same values that we would have to other parents when actually that's not always the case. Just look at JW for instance. They would rather see their children die in the name of religion than allow a blood transfusion, whereas to most normal-thinking people that's a concept which is just inconceiveable.
I think she's scared and probably in denial as to the seriousness of his cancer.
Like I said, thankfully the courts have stepped in and he will be getting the radiotherapy he needs.
I think a family dispute is part of the problem. Poor woman
There have been several threads on this subject where the in and outs were discussed to the nth degree. MrsDeVere has spoken MUCH sense on the subject. I think she wants what is best for her son.
If my DH decided to try to withhold life-saving treatment from one of our Dc, we'd have a major family dispute too!
On other threads mothers with personal experience have spoken about how this is not a straightforward choice due to the risks
Hyperthermia can have an additional effect to radiotherapy in a very few tumours where the heat can be given. Brain tumours aren't one of these.
Medulloblastoma needs radiotherapy to the whole of the brain and spinal cord for children with it to have a chance of long term survival, and it has to happen soon after surgery before the tumour seedlings get established elsewhere - hence why the oncologists needed the court to order it quickly
"If my DH decided to try to withhold life-saving treatment from one of our Dc, we'd have a major family dispute too!" quite. I do wonder whether the reactions on here would be the same if it had been the father trying to withhold the treatment rather than the mother.
radiotherapy does have a lot of very unpleasant side effects which are permanent and debilitating. My mother couldnt' handle chemo so cut her course short at 3 sessions and had twice the amount of radiotherapy instead. She now suffers from neuropathy which means she's in constant pain in her legs. Her thyroid is f*cked meaning she needs an operation to correct it. She is no longer absorbing calcium and it's all in her bloodstream (which i think causes one or other of the neuropathy / thyroid issue) and so of coruse she's on a very fast track to osteoporosis. More severe pain.
All of these are known / likely side effects of radiotherapy.
HOWEVER, the docs seem to be saying it's that or highly likely death for this child, but the mother has read a lot of articles about untested / experimental treatmetns which she thinks should be available on the NHS for her son. Articles by the marchioness of worcester saying that an alkaline diet cured her cancer probably don't help with some people.
She is scared, defensive and a bit vulnerable, without the skills or background to assess medical evidence, and is worried about side effects. We often hear people on here saying mum knows best against (not very serious) advice given by a health professional. She has that mindset, probably, in a more extreme situation. She probably felt out of control when he had surgery, as that would happen so fast, and is trying to find her feet. I completely disagree with her stance but I do feel there is a better way to handle someone who is in such a vulnerable position than parading them about so they look like a loony. She obviously hasn't had time to process how serious the cancer is as she still has a very fixed idea about his future. I think it is very sad and she should be tucked away somewhere away from public gaze with nice people explaining things to her and trying to help.
Runner that's a very generous assessment, because from some of the coverage, she looks like a crazed fame hound the way she's handling court appearances.
I think she's confused and frightened but I can't imagine her thoughts and decisions are borne out of anything other than love and a desire to protect.
I haven't followed the details of this, but personally I don't believe in survival at any cost.
Nor am I sure of our right to inflict suffering on a child against a tiny chance of life.
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.
Young children don't fear death as a teen would, they cannot google their prognosis, they don't grieve the adult freedoms they can almost reach in the same way a teen would.
If radio therapy was likely to leave my beautiful clever DDs severely mentally impaired then I would rather they died peacefully. I would wish the same for myself or DH.
There are no easy answers in cancer treatment it leaves parents,doctors and older children with impossible choices.
I wish this lady, her DH and her DS all the very best and feel no wish to pry into the details of their lives.
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. "
I am not sure whether that is true or not. I think you'd have to live twice to have enough information to decide that.
It hadn't occurred to me before reading the replies here, but maybe the mother does think that refusing treatment gives her an option to have a healthy child who will give her grandchildren in 20 years time.
My heart goes out to her and her husband (and I hope I am not being cruel to say I am glad that it isn't happening to me).
Startail - Being 'mentally impaired' is worse than dying? Really?
I read somewhere that the medical 'experts' she used in court were not actually qualified doctors. So part of the problem could be the fact she is clinging onto hope given to her by people who are medically unqualified.
The treatment is very unpleasant and has no guarantee of working - the prognosis for this boy is not good at all. Life at all costs is not necessarily the only fair option.
It seems utterly ridiculous to even consider grandchildren as part of the equation. He might bot survive and even if he does- he might not want children.
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.
Because she is fucking petrified that some doctor called radiotherapy 'frying his brain'.
And generally fucking petrified, I imagine.
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.
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.
I think she has spent her whole life talking bullshit about herbal remedies, holistic therapy, homeopathy, angel therapy and doctors as evil pricks that she cannot now back down.
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!
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.
Startail has never been sick nor have her loved ones.
I would take one tenth of my husband rather thaan lose all of him.
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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.
perhaps she is in denial or perhaps she needs someone else to take the decision out of her hands. it's really hard to give permission for a horrible, damaging treatment, even if you know it's possibly life saving.
Sorry Startail, but I think your expression of your (rather extreme) opinions are crossing through insensitivity into outright hurtfulness now.
You may or may not be intelligent, although in my experience most people who say they are excessively intelligent, are not whilst those who really are don't see it as something to dwell on - they have other things to think about! However, whether you are or you are not, it is not acceptable to say such things to people whose children are not as fortunate as you.
Stinkyfeet, I wish your son a full and speedy recovery.
Radiotherapy has some possible serious side effects, agreed. So does being dead!
I honestly cannot work out what exactly she wants/thinks/suggests. She wants/wanted to "explore" alternative therapies as if there was all the time in the world! Magic bean, as another poster said.
He needed the treatment, without it he would almost certainly die. With it he has a good chance of living, but may have decreased fertility, lower IQ than expected, some speech and movement difficulties. Surely it's a no brainer!
I'm glad the court saw sense and ordered the treatment. Children are people not possessions and giving birth to one should not give you the right to sign and seal their death sentence.
I feel for this boys poo poor father, can you imagine if your child's other parent refused your child life saving treatment, imagine how scared shitless he was that he would have to sit back and watch his little boy die because his "hippy" (Neon and Electra!) ex believes the expert doctors were wrong and "exaggerating"!
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