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Calling Sqad !

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mikey4444 | 07:54 Sun 31st Aug 2014 | News
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Morning Sqad !...are you able to shed anymore light on this affair of Aysha please ? We need a few more experts opinion methinks !
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It sounds as though the parents were very happy with the surgery to remove the tumor, it is what was to follow that they were unhappy about.
The follow up radiation treatment on the child's brain by x-ray has side effects. It kills good tissue as well as bad. They thought Proton Beam Treatment would be a better alternative, but the doctors disagreed.

If you ask anyone in the medical profession, they will all say the parents should obey and do as they are told.

It will be interesting to see how this pans out over the next few months.
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Indeed Gromit. This lad is very ill, and anything could happen. It appears that his long term prognosis is not wonderful. I am still for our resigent Surgeon to add his tuppence worth !
It would seem that the parents took their child mainly because of the threat of a child protection order. I would like someone who has knowledge of the procedures involved to explain a) the likelihood of a CPO being issued in this case and b) the process involved. I think the Kings may have been a bit hasty in their actions but the sever pressure which they are under probably meant they were not thinking too clearly.
Why open yet another thread on this subject, there is plenty of opportunity for sqad to add his tuppence worth (as you put it) in either one of the other threads?
Morning mikey.

Yes, i have been following the treads and they have been divided into two, the medical aspect and the parental aspect.

From the medical point of view, this child has an advance malignant brain tumour which is clearly inoperable. The brain surgery that he recently had was perhaps just a biopsy and general "scraping out" of any accessible tumour, not an excision of a tumour as we understand it.

The prognosis for the child is poor perhaps a 50/50 chance of seeing Christmas of this year and the only treatment is radiation and chemotherapy.

This is where it gets tricky....the parents have gone onto the internet and seen the dangers of traditional DXT as opposed to the relative ease of Proon Beam Therapy and have put this to the Consultants who clearly feel, either for clinical reasons or financial considerations, that PBT is not suitable.

The parents disagree and hence are off to Prague for PBT.

I wish people would keep off the internet in medical matters as, most of the time, it is misleading. Internet is so impersonal and medicine is so adapted to each person.

That is my summing up........I maybe wrong.
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To bring it to Sqads attention more easily and visibly AOG...why do you have to be so bally dyspeptic all the time ?
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Thanks Sqad...nice and clear, as I expected.

Just another question if I may. Leaving aside the exact circumstances of this child, just what is it about the Proton Beam technique, that it may be better than the traditional treatment ?
mikey.....PBT is more accurately focused on ONE area......the tumour.

Conventional DXT is more "dispersed" affecting surrounding "normal" tissue.

It matters not a jot for some malignancies.....breast, kidney, prostate, but for the brain, it may well damage "vital areas", particularly in children.

That is basically the difference.
A sad case - it looks like there was a complete breakdown in communication between the doctors in Southampton and the parents.

Proton beam therapy is useful only in a relatively small percentage of cases of children with brain tumours.

In order to comment one would need to know the site and size of the tumour, how much was removed at operation, the exact histological type, the grading, and whether it had spread. All this is unknown.
Proton therapy is not recommended for tumours which have spread.

A better option for the parents would have been to have asked for a second opinion at GOS (Great Ormond Street) for example.



Mikey,
I posted a link to this on the other thread, but perhaps you didn't read it:

What is radiation therapy?
Radiation therapy uses ionising radiation to kill cancer cells while causing minimal damage to surrounding healthy tissues.  The type of radiation most commonly used is high energy X-rays which are capable of penetrating tissue to reach deep tumours.  While X-rays cause damage at the target region, they also damage healthy tissue either in front of, or behind, the tumour.  Many of the developments in X-ray therapy have sought to get more of the radiation to the tumour and less to the healthy tissue. The Christie has been at the forefront of research into this. We are leaders in the delivery of advanced radiotherapy.  This includes stereotactic radiotherapy and intensity modulated radiotherapy, both of which reduce side effects. We treat more patients with advanced radiotherapy than any other UK centre.

Why proton beam therapy?
Proton beam therapy is a different type of radiotherapy. It uses a high energy beam of protons rather than high energy X-rays to deliver a dose of radiotherapy for patients with cancer.

Like X-rays, a beam of high energy protons penetrates tissue to reach deep tumours.  However, the ionisation behaviour of a proton beam is fundamentally different to that of an X-ray beam. This is because protons produce more ionisation (and therefore cause more cellular damage) at one particular depth that is strongly dependant on the energy of the proton.  This means that, compared to X-rays, protons cause less damage to healthy tissue lying in front of the tumour, and no damage at all to healthy tissue lying behind the tumour.  This greatly reduces the side effects of radiation therapy.

Proton beam therapy gives us the potential to reduce the long-term side effects of radiation treatment, which is especially important in children. It also enables us to increase the dose to certain tumours, in particular those resistant to radiation, while sparing the healthy tissue. This is particularly useful for tumours near the spine or at the bottom of the skull where there are sensitive structures, such as the brain and spinal column, nearby.
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Once again Sqad...thanks. And thanks to Gromit...there are so many posts on this that I can't see the wood for the trees !
It's not all advantages with PBT:
Proton Beam Therapy specifically targets cancer cells, reducing the radiation dose to certain normal tissues or cells. Despite this, patients may still experience similar side effects and risks to those experienced by other forms of radiotherapy. Strong evidence of the clinical benefit of Proton Beam Therapy is currently limited and because the service has only been nationally
commissioned since 2008 there is relatively little long-term side effect and survival time follow-up data.
It is extremely important that you discuss the treatment options available to your child with your Clinical Oncologist. This will help you and your child to make an informed decision about whether Proton Beam Therapy is the most suitable option.
http://www.england.nhs.uk/wp-content/uploads/2013/08/pbt-paeds.pdf
mikey4444

/// To bring it to Sqads attention more easily and visibly AOG...why do you have to be so bally dyspeptic all the time ? ///

Don't you think sqad is capable of reading threads without you specifically pointing them out to him?

As for being 'bally dyspeptic' as you put it, it must be catching.
slaney...from what i have read, this is a stage 4 medulloblastoma so one can say it is "high risk."

The patien't head has not been shaven so we must presume that a craniotomy was not performed,because MRI scans showed it to be inoperable and only a biopsy and general "scraping" out was performed.

mikey4444

An interesting post.

I for one would not know what to do in their shoes. They would have to make a decision not only based on the medical evidence placed in front of them, but also what that voice in their heads whispers to them ("This is a life and death decision that you're making for your child - ultimately, the future of your depend on that").

A nightmare.
mikey4444

Also, as the Notting Hill Carnival has shown, there's nothing wrong with opening multiple threads on the same subject, if the news story has moved on.

I'm sure that others would agree.
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Thanks for your support SP !
I wouldn't place too much store by the lack of shaving Sqad - these days only a small area is shaved, and it could have been posterior, the most likely site if it is indeed a medulloblastoma.
I seem to remember seeing somewhere that his brother had posted that a tumour the size of a tangerine had been removed.
The first hospital based PBT operations took place in 1994. Worldwide there are 33 proton facilities in operation, and a further 22 are in a planning stage or under construction (all in the northern hemisphere). As at December 2010, 74,000 patients worldwide have been treated with Proton Therapy.

The first UK centre will open in 2017 at The Christie hospital in Manchester.
When my sister had an op to try and remove her brain tumour..GBM4...six years ago, only a very small area of her head was shaved.

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