Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear All, Thank you to all those who have posted with support and advice, I really appreciate what people have shared. We have said no to RT and have just returned from Annika's first scan (an MRI of her arm). The scan was clear! We will go back in three months for another MRI of her arm and a CT sc...

Dear Lorryn,

Wonderful news! So happy for you and your precious grand daughter.

Warm wishes,
Kat

Dear L, I was so very sorry to hear about your grand daughter's diagnosis, she sounds like a beautiful brave little girl. I feel our stories may have many similarities. My daughter Annika was diagnosed in July this year just after her eighth birthday (her birthday was spent in hospital after her fir...

Dear All, Just a quick update. We haven't said no to RT yet but we are pretty close to doing so. We have had advice back from one sarcoma specialist recommending RT and a further three opinions from specialists treating ASPS suggesting a wait and watch closely approach. They all agree that it is a d...

Thank you to everyone who has replied on the forum and sent me a personal message. Since my daughter's diagnosis I have been unable to find any other families battling this disease and it is good to talk with others who understand (although it would have been infinitely preferable to meet under more...

Hi Olga, Thanks for your quick reply. Just a few questions, were you able to obtain clear margins with your son's second surgery? How big was his primary tumour? Is the radiosurgery you refer to the same as brachytherapy (the surgeon uses catheters to insert radioactive pellets into a specific locat...

This is my first time posting on this forum but I have been reading posts since my daughter was diagnosed with ASPS in July this year (2013). Thank you to all who post here as we have not found a lot of information and this site has been incredibly helpful. Here is some background information: My da...