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

(54 Posts)
Catriona100 Fri 04-Jan-13 09:15:26

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.

NicholasTeakozy Fri 04-Jan-13 12:16:34

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. smile

flatpackhamster Fri 04-Jan-13 12:41:02

Because she read on the internet that magic beans can cure him without the risk of him being unable to give her grandchildren.

Catriona100 Fri 04-Jan-13 12:42:52

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.

AppleOgies Fri 04-Jan-13 12:43:07

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.

wannaBe Fri 04-Jan-13 12:43:57

because she would apparently rather her son die than have a reduced IQ/be infertile. hmm

AppleOgies Fri 04-Jan-13 12:46:24

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.

Catriona100 Fri 04-Jan-13 12:49:08

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??

wannaBe Fri 04-Jan-13 12:51:10

"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.

AppleOgies Fri 04-Jan-13 12:51:12

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.

picketywick Fri 04-Jan-13 12:54:13

I think a family dispute is part of the problem. Poor woman

LeavingNewYork Fri 04-Jan-13 12:54:53

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.

Catriona100 Fri 04-Jan-13 12:56:00

If my DH decided to try to withhold life-saving treatment from one of our Dc, we'd have a major family dispute too!

Welovecouscous Fri 04-Jan-13 12:56:34

On other threads mothers with personal experience have spoken about how this is not a straightforward choice due to the risks sad

CMOTDibbler Fri 04-Jan-13 12:56:52

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

wannaBe Fri 04-Jan-13 12:57:44

"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.

BobbiFleckmann Fri 04-Jan-13 13:01:01

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.

RunnerHasbeen Fri 04-Jan-13 13:01:10

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.

BobbiFleckmann Fri 04-Jan-13 13:03:08

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.

Nancy66 Fri 04-Jan-13 13:13:04

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.

Startail Fri 04-Jan-13 13:13:57

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.

Catriona100 Fri 04-Jan-13 13:19:21

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).

CornyClam Fri 04-Jan-13 13:21:30

Startail - Being 'mentally impaired' is worse than dying? Really?

niceguy2 Fri 04-Jan-13 14:03:27

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.

LeavingNewYork Fri 04-Jan-13 14:04:20

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.

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