In (european) news: Protons

[Palex80]

An interesting case of a 5 year old boy with a medulloblastoma from the UK has hit the news in Europe.

Apparently the radiation oncologists in the UK (NHS) did not refer the kid to the radiation oncology panel in the UK, which decides which patients can have protons covered by the NHS in a foreign center, apparently seeing no posssible benefit in the boy's case.

The parents of the kid however absolutely wanted protons and even flew to Spain (with the boy) to sell their vacation home in order to get funds to pay for the treatment themselves. This led to their arrest (in a bizarre incident), since authorities feared the health of the child was in danger.

Anyways, it seems the kid is going to get protons in the Czech republic after all after a public outcry.

What do you think?

Apparently the British are finally getting their act together and are building two new proton centers to cover their domestic needs. But until those are online, patients are being sent abroad.

http://edition.cnn.com/2014/09/02/world/europe/brain-cancer-boy/

http://www.independent.co.uk/voices...-dont-know-the-limits-of-liberty-9714414.html

http://www.independent.co.uk/news/s...-the-czech-proton-therapy-centre-9715200.html

http://www.independent.co.uk/life-s...e-therapy-at-czech-proton-clinic-9715537.html

It makes me wonder, what I would do, if I was in the UK and my son had a medulloblastoma.


"Aysha King, the five-year-old boy with a brain tumour, is now likely to go the the Proton Therapy Centre in Prague after doctors at Southampton General Hospital indicated that they would support the treatment, even though they believe there are no great benefits over conventional radiotherapy."
"Conventional radiotherapy" in the UK: probably 2D

The CNN article just turns stupid, when it tries to indirectly make the case against protons by referring to Mr. Kennedy's treatment with protons and him dying despite it. Journalists...

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[Gfunk6]

I think NHS was in the wrong here. A 5 year old with medulloblastoma is essentially the ideal patient for protons. I suspect his UK doctors had a lot of pride on the line, so they refused to have him go abroad for care. Odd that the parents could not privately finance the child's treatment under UK law.

 

[medgator]

I think NHS was in the wrong here. A 5 year old with medulloblastoma is essentially the ideal patient for protons. I suspect his UK doctors had a lot of pride on the line, so they refused to have him go abroad for care. Odd that the parents could not privately finance the child's treatment under UK law.

That equally surprised me and gives me caution considering many proponents of the nhs system for here in the U.S. suggest that is always an option if you are unhappy with the level of care from nhs insurance.

Came across this in one of the UK newspapers, a good read on how many in the UK probably feel about it.

Proton treatment saved our son - why did NHS deny Ashya?

 

[Neuronix]

I think there is more to the story than is in the press. I think it might be good for the NHS to disclose their policy on protons for medulloblastoma in general, but there is of course more to the story than you're hearing in the media. The NHS does refer for protons to the USA in many cases based on a set of criteria.

 

[medgator]

I think there is more to the story than is in the press. I think it might be good for the NHS to disclose their policy on protons for medulloblastoma in general, but there is of course more to the story than you're hearing in the media. The NHS does refer for protons to the USA in many cases based on a set of criteria.

Perhaps. I still find it perplexing that by this point, the nhs couldn't find the resources to build even one proton center in the UK. The U.S. is a bit extreme in the other direction.

 

[Neuronix]

In the USA, the growth of protons is fueled by venture capital groups investing the bulk of the money for proton centers in order to speculate on future healthcare reimbursements. Outside the USA, this caliber of venture capital within a for-profit healthcare system doesn't exist.

 

[seper]

Proton centers in USA only grudgingly accept patients for CSI. Machine time required is enough to treat 3 prostate cases. If you have a CSI pt to refer to an american center, be ready for a lot of pain.

 

[Neuronix]

Depends on the center. I did not observe that at UF.

 

[mavrik13]

The question should not be whether proton therapy works (of course it does), the question should be whether it is any better than conventional treatment. Is there any evidence, in any disease site, of better PFS/OS? Any evidence of fewer clinically significant side effects?

 

[thecarbonionangle]

having witnessed my fair share of discussions with patients about treatment options in places that offer protons it is my general impression that when given the choice the patient will most often choose protons even though there is zero indication for it. Attending discussion usually goes like this: we have IMRT and protons. There is a theoretical benefit of sparing surrounding structures with protons which is not proven blah blah. Ultimately the patient hears "theoretical" benefit and said institution easily leads the sheep to the slaughter. Prostate protons? You betcha!

Wait until carbon ions arrive!

 

[medgator]

The question should not be whether proton therapy works (of course it does), the question should be whether it is any better than conventional treatment. Is there any evidence, in any disease site, of better PFS/OS? Any evidence of fewer clinically significant side effects?

That data will take time to develop. Kids suffer much more from the late effects of RT than adults, and IMO the theoretical benefits should be studied in that population first. Again, I think the free-market healthcare system in the US has probably built too many proton centers, but the UK/NHS has done too little under its socialized system.

When you examine the data, Europe as a whole seems to have inferior cancer-specific outcomes as compared to the US, and when compared to Europe, the UK/NHS seems to be at the bottom.

 

[clinonc]

I am a clinical (radiation) oncologist in the UK. There are a number of patronising inaccuracies above.

Children in the UK who require cranio-spinal irradiation are treated with conformal radiotherapy at the very least; several centres use tomotherapy, others will use VMAT or RapidArc where indicated, particularly for posterior fossa boosts.

The UK proton panel maintains a list of diseases that meet the current finding criteria for treatment abroad with protons. If the disease is not on the list, there is no point in making an application for funding, as it will be declined. This list is regularly reviewed in keeping with the principles of evidence-based medicine.

The idea that UK oncologists would prevent a family from taking their child abroad for treatment due to 'pride' is downright offensive. Furthermore, there is nothing in UK law to prevent patients from funding their own treatment, abroad if necessary. Removing the child from hospital without any consultation with hospital stuff is not the ideal way to do so. Given that the child's welfare was in question, detaining the parents was not a disproportionate response.

Finally, with respect to poor cancer outcomes, it is absolutely correct that we could do better. The main issues are delayed presentation, delayed diagnosis in primary care, patchy access to high quality RT and surgery, and our Euro-buddies fiddling their figures Overall, the NHS is a better system than that of the US, ad judged by a US think tank (http://www.theguardian.com/society/2014/jun/17/nhs-health).

 

[Neuronix]

The UK proton panel maintains a list of diseases that meet the current finding criteria for treatment abroad with protons. If the disease is not on the list, there is no point in making an application for funding, as it will be declined. This list is regularly reviewed in keeping with the principles of evidence-based medicine.

So why is ependymoma on the UK list (http://www.nsd.scot.nhs.uk/documents/guidelines/ncgprotonreferralmar2010.pdf), but not medulloblastoma?

At least when the USA makes recommendations through the USPSTF, they are transparent about why they came to their decisions. It seems to me that the NHS should be more transparent about their decision making.

 

[medgator]

So why is ependymoma on the UK list (http://www.nsd.scot.nhs.uk/documents/guidelines/ncgprotonreferralmar2010.pdf), but not medulloblastoma?

At least when the USA makes recommendations through the USPSTF, they are transparent about why they came to their decisions. It seems to me that the NHS should be more transparent about their decision making.

The cynic might answer that medullo is more common and hence a possibly much more expensive proposition to cover since the UK sends these patients abroad.

Apparently, these decisions are all made by the NICE. Here's one editorial on that group's decision to not cover sutent several years ago: http://www.dailymail.co.uk/news/art...-specialist-says-decisions-deeply-flawed.html

 

[clinonc]

So why is ependymoma on the UK list (http://www.nsd.scot.nhs.uk/documents/guidelines/ncgprotonreferralmar2010.pdf), but not medulloblastoma?

At least when the USA makes recommendations through the USPSTF, they are transparent about why they came to their decisions. It seems to me that the NHS should be more transparent about their decision making.

Probably because ependymoma rarely requires irradiation of the whole neuraxis. If you only irradiating the tumour bed there is probably much more to be gained (from a late cerebral toxicity point-of-view) from the dosimetric advantages of protons than if you're doing CSI. I accept that protons irradiate much less heart, lung, pancreas etc during CSI than do photons, but you have to draw the line somewhere. The other reason is that for medulloblastoma, seemless progress from surgery/chemo to radiation is important, and if you're sending kids from London to Florida, this is harder to achieve.

 

[clinonc]

The cynic might answer that medullo is more common and hence a possibly much more expensive proposition to cover since the UK sends these patients abroad.

Apparently, these decisions are all made by the NICE. Here's one editorial on that group's decision to not cover sutent several years ago: http://www.dailymail.co.uk/news/art...-specialist-says-decisions-deeply-flawed.html

Proton decisions are not made by NICE.

Sutent has been available for years through the Cancer Drugs Fund. http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/cancer-drugs-fund

 

[thesauce]

Finally, with respect to poor cancer outcomes, it is absolutely correct that we could do better. The main issues are delayed presentation, delayed diagnosis in primary care, patchy access to high quality RT and surgery, and our Euro-buddies fiddling their figures Overall, the NHS is a better system than that of the US, ad judged by a US think tank (http://www.theguardian.com/society/2014/jun/17/nhs-health).

On the whole maaaaybe, but not for cancer care: http://www.npr.org/blogs/health/201...h-care-laggard-u-s-shines-in-cancer-treatment

 

[seper]

Back to the science.
Specialists interviewed by Guradian (http://www.theguardian.com/uk-news/...tment-cure-children-conventional-radiotherapy) stated that protons offer no benefit in CSI.
What does actual published data point to?

 

[Gfunk6]

Back to the science.
Specialists interviewed by Guradian (http://www.theguardian.com/uk-news/...tment-cure-children-conventional-radiotherapy) stated that protons offer no benefit in CSI.
What does actual published data point to?

There was a great 'point-counterpoint' article on this very topic in the Red Journal: http://www.ncbi.nlm.nih.gov/pubmed/23958143

Point: We know that protons are dosimetrically better and it would be unethical to test this clinically in children.
Counterpoint: We don't have hard data and it is unreasonable to place a burden of travel + associated expenses when they can receive good treatment near home.

Protons vs. Classic CSI is probably a no-brainer in favor of protons. However when you add advanced VMAT and tomotherapy into the mix, it becomes murkier.

 

[seper]

Good review, thanks. Has anybody ran a predictive model for 2nd cancers on Tomo vs. PRT for CSI?

 

[Palex80]

Regarding the comparison of protons vs. photons in children there are probably 3 main arguments for/against each technique.

1. Availability
If you are not getting a proton soon as soon as possible for the child, you may endanger the outcome. Thus, if you are going to go for protons, you should be able to get them fast.
In the case of the UK child, it seems that protons were available from the early onset in Prague, thus this argument does not apply

2. Secondary malignancies
Here protons win. Irrelevant of what photon technique you are going to use, protons will always be better here. The only other technique with low secondary malignancies rates are probably electrons for CSI, which is however only doable in babies/small children.

3. Late toxicity of normal tissue
2D/3D sucks here. If you are going to boost the posterior fossa and possibly face residual tumor, you are bound to fry the inner ear if you are using 2D/3D. There is little you can do, to actually avoid having a mean dose in the cochlea < 45 Gy. 2D/3D also leads to relevant doses in bowel, pancreas, heart, etc. This means the kids may have bowel problems, develop diabetes or arteriosclerosis. Thyroid gland is also an issue and you have to watch out for the ovaries as well.
VMAT/Tomotherapy are an option, depending on how you do it. Performing a full rotation may offer a very conformal dose to the target, but you will have an excessive risk of secondary malignancies, so that's a poor choice in my opinion, when it comes to children. You can try to limit the dose for example by contouring the breasts or defining a small angle of rotation, rather than a full rotation, but the more you do that, the more the distribution ends up looking like 2D/3D.

 

[mavrik13]

Regarding the comparison of protons vs. photons in children there are probably 3 main arguments for/against each technique.
2. Secondary malignancies
Here protons win. Irrelevant of what photon technique you are going to use, protons will always be better here. The only other technique with low secondary malignancies rates are probably electrons for CSI, which is however only doable in babies/small children.

Has data been published on this? The only study I've seen was done by Chung last year, comparing protons and photons, and the study did not conclude this.

edit: Found this article, but I am not familiar with the methods (e.g. it is not an epidemiologic study, but a theoretical estimation of second cancer risk by dosimetry? I have no idea about the validity of this approach) http://www.redjournal.org/article/S0360-3016(02)02982-6/abstract

 

[Palex80]

There is very little / no data on that because the type of proton treatment being delivered today is not the same than 10 or even 5 years ago.

Some argued that scattering proton delivery techniques produce excessive neutrons, which diminish the advantages of protons. However with spot-scanning proton therapy becoming available nowadays in most institutions it's pretty clear protons will lead to less malignancies in kids. But indeed, you will have to treat hundreds of them and follow them up for 10+ years before you can start seeing differences there.

The argument however is the same. The more tissue you irradiate (irrelevant of what dose you use), the higher the risk of a secondary malignancy. That's the main argument against IMRT kids and the main argument for spot-scanning protons.