I am so sorry to read your story about your grandson - it must be so very worrying for you all.  Have you investiated Cyberknife targeted radiotherapy?  Also Gammaknife?  I had Cyberknife on a brain tumour (about 1.5cm) in February this year - the scan in August showed a small size reduction and less activity on the PET scan and I have another scan next month to see what is happening (it takes a while to shrink).  However, my symptoms are still gone so I am very hopeful.

For a young person to have this disease is so hard to imagine as a parent, and you have my full empathy.  I was at chemo today and met a Mum & Dad with their young daughter who was having treatment and wondered how I could possibly cope in that situation.  I so hope that there are good treatment options available and if I can be of any further help witth the above just give me a shout! Much love to you all x

Thankyou for your kind words of reply.

I will message his mum today about what you said, we dont yet know the full extent of what the Royal Marsden have said but my wife is meeting with his mum on wednesday.

My wife thought that if you had Proton Beam Therapy on the original benign tumour you couldnt have any more radiation type therapy?

Once again will update you when we know more

Any further advice is appreciated.    ........................................  David.

 Hi MAX56

His mum asked me to ask you, with the Cyberknife is there a restriction as to how deep they can do it as her son's tumours are so deep surgery has always been ruled out barring for thebiopsy.

Anybody else that wishes to contribute to the original post be my guest.    Thanks.

Hi DJS (David) I just read your post and wanted to let you know that I'm thinking about you at this time with your grandson's diagnosis. I too have grandkids and any time there have been any concerns around their health, I was very concerned along with their parents. Max has given you some excellent information and I hope this can help. I don't have any info to give, but wanted to express my support for this challenge that you face with this special young person. I hope  his medical treatment team can come up with a suitable plan for him and that everything works out in his favor. Come back on to the forum and keep us posted on how he gets along with his care.

Sending all you hugs and best of luck with these challenges that you are facing.

Lorraine

Hi David .... gosh I am really not sure. I know my tumour was in the Thalamus which looks very deep and central in the brain to me when I googled it.  The Cyberknife Centre in Harley Street will be able to give you more information, they are very helpful.  Your wife may have a point regarding PBT and that would be a good question to ask too.  x

Thankyou for your kind words Lorraine

Will put that to her Max         Thankyou