Mother doesn't want her son to have radiotherapy after having brain tumour removed.

(186 Posts)
OscarPistoriusBitontheside Fri 07-Dec-12 14:49:11

Can't make the link work but it's on sky news.

Long story short a mother wants to deny her son radiotherapy treatment after his having ha a brain tumour removed because she is worried it will affect his long term health. Doctors have said he had a better chance of survival if he has it. Then estranged (according to the press) father agrees with the doctor.

Personally I think she's crazy. I know two small children who died of brain tumours in the last year and I can only imagine their parents would have given anything to even have had the chance of a discussion about radiotherapy with their doctors.

labtest Sun 30-Dec-12 23:17:39

I realise I am late to this thread but have just come across it. I really feel for this mother. My daughter was diagnosed with acute lymphoblastic leukaemia in June 2011 at the age of 4. Despite being informed that her odds were very good (being a white girl under the age of ten) my first instinct was that I didn't want to put her through treatment. I couldn't bear the thought of her enduring chemo and hair loss, sickness etc. to make matters worse, she was not ill and had been diagnosed after complaining only of a sore hip, so I felt that by putting her through treatment I would be the one making her ill. Nonsense I know but logic had evaded me at this point. Of course she did have treatment, it's ongoing til September 2013 but I can totally understand why a parent would resist, particularly when it can be damaging and results are not guaranteed. This mother is not a nutter, she is not uncaring. She loves her son and is terrified for him. I hope for the best outcome for him and peace of mind for her.

GlitterySparklyBaublesOfDoom Sat 22-Dec-12 08:26:27

Just realised about half of my post didn't appear. I also meant to say that they usually start radiotherapy 6 to 8 weeks after surgery so the court case won't have made much difference in terms of delay. As for the tumour regrowth, I honestly don't know as we were extremely fortunate in that didn't happen to DS. If they do believe that they have managed to remove it all now then radiotherapy and chemo could cure him and stop the thing from ever growing back again. Or not. It is a gamble and as a parent you can only try to make the best decision for your DC based in the advice the medics give.

Yes 5madthings there are too many MNers who have and are going through this. It's shit!

5madthings Sat 22-Dec-12 00:09:21

glitter they were saying it coyld cure him.before he relapsed but as he has alreasy had a reccurrance of the tumour the cgances are now very slim?

There are many differing versions and information available it seems. I am pleased it worked for your son, this case must bring bacl horrible memories sad its very difficult for many mnmnetters.

dikkertjedap Sat 22-Dec-12 00:07:31

For those who like to understand more about medulloblastoma, treatment, trials and survival rates. The mother is damned if she does and damned if she doesn't. It is heartbreaking.

5madthings Sat 22-Dec-12 00:06:37

Thankyou for that explanation expat

Neons cancer has already recurred, hence the resent operation? That in itself is not goid. It us a particularly aggressive cancer from what i have read and the 85% figure is the chance of him being alive five years from diagnosis. Not an 85% xhance of a cure. From what i have read had he stayed in remission for two years his idds would have been.better, but that has sadly not hapoened.

As ever the press are picking and choosing what and how to report this story.

It is horrible for all involved. I think those condeming his mother should be ashamed.

T h tho i agree it is a worthy discussion i do think.some form of annonymity for the family would be preferable.

GlitterySparklyBaublesOfDoom Sat 22-Dec-12 00:06:13

Yes of course it could cure him. My DS had the same tumour in 1995. He was vey seriously ill before he had surgery and then radiotherapy. He's here now aged 25 and he graduated from Uni last year with an Honours degree.

expatinscotland Fri 21-Dec-12 23:56:29

Plenty of people who originally had an 80% chance of cure still die. This may have also been the original figure. My daughter's original prognonsis was fair, until the cytogenetics came back and the induction round of chemo, whilst remitting her morphologically, very well (from 60-3% leukaemia) failed to remit her of a particularly damning genetic abnormality. This figure then dropped to terminal without stem cell transplant. We punted for it, of course, her risk of death was calculated at 15%. She died.

Her risk of relapse, even give successful transplant, was still over 50%.

But if her case had gone to press I'll wager London to a brick all that would have been seized on what her initial odds, which were useless.

NilentSight Fri 21-Dec-12 23:49:20

I have only read about the case on the BBC website and nowhere have I read that the childs condition is terminal and that radiotherapy is purely palliative with a very short prognosis. I cannot begin to imagine the agony that his parenst have faced but I am not sure that the medical teams and childs father would have gone so far with their legal challenge IF his prognosis was so limited.

AmberLeaf Fri 21-Dec-12 23:39:34

Horrible situation for his parents and I judge neither of the TBH

AmberLeaf Fri 21-Dec-12 23:38:18

This wont cure him will it?

Id back any family member who wants to just let him 'be'

5madthings Fri 21-Dec-12 23:01:56

The papers keep saying 80% chance of living five years if he has the raduotherapy but i dont think that is very accurate? Esp guven he has already relapsed?

Its awful and some of the jydgemental.comments o line are horrid. I have just argued with friends of a friend on fb. People are seeing the 80% figure as an 80% chance of cure but that is not the case at all.

I am right in my understanding that the treatment is to halt the spread of the cancer and to extend his life but ultimately they cannit 'cure' him. He is going to die but uts a matter of when?

The thought of going through this is heartbreaking. No parent wants their child to die but equally months of a gruelling treatment that may cause suffering is not a nice option sad

Highlander Fri 21-Dec-12 22:54:05

5 years? That poor kid will be lucky to see Easter sad

5madthings Fri 21-Dec-12 22:20:45

i am not sure what to think, i hope the treatment helps the boy, but my understanding is this is about prolonging his life, not a cure? the cancer has already reoccured and quickly as well which is not a good sign. he may get 5 years of life, but if he is constantly having treatment for a lot of that time then it may not be the best quality of life. awful awful situation for the family sad

NilentSight Fri 21-Dec-12 22:09:47

Very, very glad that the judge has ruled in favour of the doctors and the childs father. Wishing Neon a full and speedy recovery.

MrsDeVere Fri 21-Dec-12 15:46:28

Really?
Tbh I am avoiding the whole thing.

She may well ave issues and this has pushed her over the edge. Who knows?

pumpkinsweetieMasPudding Fri 21-Dec-12 13:34:45

Watching the news now, i take it back the woman is a nutter!

Wingedharpy Fri 21-Dec-12 02:41:52

"One of the problems is that medics don't necessarily all agree with each other."

And in this case, neither did the parents which would make it an impossible situation for the health care professionals trying to treat this little boy.

MrsDeVere Wed 19-Dec-12 21:49:39

Its actually less than 5% for recurrent 'this type of cancer'. (according to some studies)

I am sorry for being so blunt DrRanj. I just find this sort of speculation distressing.

dikkertjedap Wed 19-Dec-12 21:34:16

DrRanj I would like to highly recommend Ben Goldacre's book 'Bad Pharma' to you as well. Unfortunately we have a long way to go before we truly have evidence based medicine.

I don't think that anybody can say that the cancer has come back because of the delay in radiotherapy. As MrsDeVere already pointed out, in all likelihood the cancer never went away. Cancer is still a killer, especially these types of cancer. I also do not understand where the 85% cure rate comes from and I doubt that it is based on sound data (if it is, I would love to see it).

MrsDeVere Wed 19-Dec-12 10:22:28

Of course it would.
It was only delayed by a few fucking days.

The cancer never went away.

He s having his treatment now. They are talking about 85% cure. Bollocks.

DrRanj Wed 19-Dec-12 08:41:52

Have you read that this boy's tumour has now come back and the mother is still refusing to let him have surgery? One wonders whether it would have come back if there hadn't been a delay in his radiotherapy.

I am all for patients having autonomy over their treatment, but it makes me sad and angry when parents make badly informed decisions about their child's health against medical advice, which is based on evidence.

dikkertjedap Tue 11-Dec-12 15:42:00

Xenia, thanks for the link BTW.

dikkertjedap Tue 11-Dec-12 15:41:32

I agree Xenia, it is a side issue.

One of the problems is that medics don't necessarily all agree with each other. Also, even doctors don't always have access to all relevant information.

Xenia Tue 11-Dec-12 15:28:26

The Government wants to make all publicly funded drug trials public even if they show the drugs are useless. www.guardian.co.uk/technology/2012/nov/20/pharmaceutical-research-open-access

This is slightly a side issue.

The bigger issue on a thread is when can a parent go against medical advice.

GlitterySparklyBaublesOfDoom Mon 10-Dec-12 22:42:49

I know, you are right and I have pulled myself together. The little boy has the same tumour that DS had - medulloblastoma - which is probably why I lost the plot somewhat.

It is an interesting debate though and the choices us parents are given are often very stark and horrible but yes, it is exactly how it is described and explained that often makes the difference. A doctor who takes time to explain all the ins and outs and possible side effects and their likelihood of success or failure is worth their weight in gold against one who just tells you what they think you should or should not do.

Rather than issues like this though, where it is purely parental choice, what angers me most - and where any further ranting I do will be directed - is that children are still being given late diagnoses for cancer, particularly for leukaemia and brain tumours as the symptoms can be misread so easily for other much less serious illnesses and that GPs are so often not referring them early enough. Not an issue in our case, our GP was fab, it was the registrar at the hospital that was a fuckwit. Although this is probably an issue for other children too.

But it is uneccessary late diagnosis that really makes me cross. Alongside the lack of any serious investment into research into paediatric cancer. And you are all no doubt fully aware that research is based massively on charitable donations rather than government funding. And that stinks.

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