Proton therapy

MonsterCookie

I feel like I need to get this off my chest - not even sure if I'm asking a question here or just looking for words of wisdom.

My son had neuro surgery in 2014 to reduce a low grade tumour which has impacted his vision, memory and hormones.

It grew again in 2015 and chemo, while problematic for him, seemed to stem the growth. However, after another bout of hydrocephalus last month we've learned the tumour is back to the same size as 2014.

We're now looking at another similar operation in Beaumont followed by 6 weeks or so in Germany for Proton treatment.

The poor lad has had a ****ty start to life and deserves a break at this stage. However, looking at the bright side:

• As tough as this has been and continues to be, I have to say I've been so impressed by the professionalism of his consultants and nearly everyone we have met in the HSA along the way. They have made sure that his experience has been largely positive.
• He has developed a really nice personality - he's funny and very sociable even though he has difficulty expressing himself sometimes.
• It could be a lot worse - seriously. I will always remember one family we met who weren't so lucky. Their sons tumour was rare and found too late to do anything other than send the poor little fella home to die. May he RIP.

K.Flyer

Hi Monster Cookie,
We are travelling a similar road to you with our own son.
We did the six weeks or so in Essen for Proton, (I presume thats where you are heading), and so far he is doing ok.
If you want, feel free to p.m me, I am happy to chat on the phone if I can be of any help sharing our experiences there regarding the Proton, accommodation, getting around etc.
Wishing you and yours the very best.

Gremlinertia

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Enjoy the forum, hopefully it will be a helpful and useful resource.

K.Flyer

First of the Proton Beam Therapy machines being installed in the U.K.
This will be great news for potential Irish patients who have had to travel much further afield for treatment. Hopefully one day Ireland will have one of its own.

UK's first cancer-fighting proton beam therapy machine arrives

Previously only available overseas, the 55-ton cyclotron accelerator machine is being installed as the final phase of the Rutherford Cancer Centre being built in Newport, South Wales.

The £17m machine will take a year to install and is expected to treat 500 patients a year.

The revolutionary technology uses a high-energy beam of protons, instead of X-rays, to deliver radiotherapy for patients - reducing the risk of damaging surrounding healthy organs.

Skyfarm

hi op

just to add in that you can travel to other countries to get treatment that isn't available in Ireland, I'm not quite sure of the scheme guidelines but i will root around and post them here

in my experience, Ireland's doctors are conservative in their approach to illness,but there is amazing doctors and care teams

K.Flyer

Proton Beam Therapy is available under the Treatment Abroad Scheme, you need to get your nuero radiation consultant to sign off for it, which may be tricky if he is not familiar or in agreement with the treatment.
Speak with your radiation consultant first and discuss the options.
If the consultant agrees with it and signs off on the approval, the HSE pay for the required treatment only and sometimes they pay for the flight for the patient and one carer, but they do not cover all other costs, accommodation, food, transport and other expenses, which are borne by the patient / patient's family.