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

[OscarPistoriusBitontheside]

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.

[renaldo]

the issue here was the parents not agreeing and the mother refusing to attend appointments. She, as the mother has the right to refuse treatments to her child and that would be respected unless there was compelling evidence otherwise. DH is a consultant and a medico legal expert and says there must be more to it than reported as parents make the judgement not to continue treatment every day and that is supported.

[expatinscotland]

Correct, Xenia. The mother has stated that he will be re-scanned this morning to determine if he's suffered a relapse and if so then she will consent to radiotherapy but if not, she wishes to take the child to Germany for treatment.

here

Three proton therapy centres which can treat children are set to be opened in London, Manchester and Birmingham in the next year, so hopefully children who are candidates for this (too young for radiotherapy, usually), can be treated in the UK instead of having to go abroad.

[GlitterySparklyBaublesOfDoom]

I must confess to being a bit wary returning to this thread following my ill thought out initial post and inadvertently upsetting people, particularly Mrs Devere and Expat which is the very last thing they needed and for which I apologise again. No excuse at all but I had perhaps had more wine than I should have when I posted.

Northernlurker put it far better than I did in my very badly worded post. Radiotherapy does have a place in the treatment of paediatric cancers and I would hate for anyone to decide against it purely because they had heard only the worst case scenario potential side effects. Yes we were warned about them but we had no choice really, chemo was not a treatment option for brain tumours back then and fortunately DS only suffered fairly minor ones as bad enough as they were. I did forget to mention he needed growth hormone injections for 2 years as the radiotherapy did affect his thyroid. He still needs to take thyroxine and will for life as his thyroid never recovered.

But Xenia, they are doing research into the long term effects of radiotherapy. DS has been monitored for years and has taken part in all sorts of research, admittedly none of it yet published. One of the studies he took part in had a timescale of 20 years so they could measure IQ over time, academic achievement etc. He is still on annual check ups 17 years later, did and does various cognitive function tests and has a heart and lung scan every year to check for any long term damage as he had radiotherapy to the spine as well as his head.

But as others have said it is a blunt instrument in that it destroys healthy tissue - the fast growing healthy cells along with the cancer cells - which can be very damaging for a young child. We were obviously very, very lucky and I will never take that for granted.

I wish the little boy and his family all the best and if he needs radiotherapy then I hope he comes through with the minimum of side effects and that it works. It is a decision I would not wish on anybody.

[dikkertjedap]

Glitter you may want to read 'Bad Pharma' written by Ben Goldacre with help of the Cochrane Foundation.

It is chilling. Especially as people expect that when they consent to take part in medical research this research actually would get used to the benefit of others. Unfortunately if the research outcomes do not suit big pharma companies it is unlikely to get published. This is very serious as it distorts the data available to doctors about what works and what doesn't work. Say there are 10 big trials for drug X. Seven of the trials show that the drug does not work or has serious side effects and does positive harm. Three trials show that the drug works (possibly by stopping the trial mid way before the harm becomes evident). Only the three positive trials will be reported (not necessarily published as that would open them to scrutiny).

It is really difficult to get reliable information about what works and what doesn't as a lot of information which doesn't suit pharmaceutical companies gets suppressed which totally skews the information available. This is a huge problem which would need a big political effort worldwide to change this.

[GlitterySparklyBaublesOfDoom]

Thanks dikkertjedap tis already on my massive reading pile.

Radiotherapy has nothing to do with pharma companies though. It is administered by the hospital radiographers and doesn't involve any drugs so drug trials aren't an issue.

Other than that I wholeheartedly agree. My own GP thankfully has refused to prescribe me medication - I won't name it, don't want to get sued - because he didn't believe that it had been properly tested/trialled. Have read about some people having horrendous side effects so I'm rather glad about that now.

[GlitterySparklyBaublesOfDoom]

But.. drug trials do have a place. Had we been offered one in a potential last chance scenario we possibly would have tried it. I can't say that for sure though. There always has to be a balance between quality of life and longer survival at any cost. I just hope that we would've acted in DS's best interests had we been faced with such a dreadful decision.

There are a lot of very effective drugs out there though and all have had to be tested/trialled at some stage. No doubt there will alway be a few ineffective/potentially harmful ones that get through due to skewed research.

[GlitterySparklyBaublesOfDoom]

Just embarrassed that I was such an insensitive plonker Mrs Devere and rightly so. I don't know what came over me - other than copious amounts of red wine - I don't think I've ever been such an arse on a thread before and I'm in no hurry to ever repeat it.

And I totally agree with your reading of the situation. I think I misunderstood that her DS was going to have chemo, which wasn't an option for my DS. I interpreted it that she only wanted him to have surgery and then alternative therapies. Which of course would be her right as a parent to make that decision if she felt it was best but wouldn't necessarily give him the best chance of long term survival.

And yes you are right. It matters very much how information is presented and makes an enormous difference. If a doctor had told us that we would be frying DS's brain then we also probably would have considered not going for the radiotherapy. If the doctor really did say that then he/she needs to consider another line of work.

[dikkertjedap]

Of course drug trials are hugely important. In many situations new drugs are the only hope on a cure.

However, it is crucial as clearly pointed out in Ben Goldacre's book and before him on many occasions by the Cochrane Foundation that ALL drug trials are fully reported, positive and negative. This reduces the risk of unnecessary or even harmful drugs entering the market without doctors knowing.

[GlitterySparklyBaublesOfDoom]

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.

[Xenia]

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.

[dikkertjedap]

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.

[dikkertjedap]

Xenia, thanks for the link BTW.

[DrRanj]

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]

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).

[Wingedharpy]

"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.

[pumpkinsweetieMasPudding]

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

[NilentSight]

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

[5madthings]

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 :(

[Highlander]

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

[5madthings]

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 :(