Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Debbie, The tumor was small, less than 2cm. According to her oncologist, "by size it was a grade 1 lesion. But due to the fact it is ASPS this is what makes it a high grade lesion". I heard this on the recording my daughter made of at the consultation. Monday they will be speaking to the o...

Thank you Olga for such a clear list. I have forwarded your responses to my daughter and she is sending your responses in an email to Dr. Maese. She will call him Monday and clarify and insist on staging scans as noted. My daughter is depending on me to help her gather information. I forward everyth...

Olga, I am happy to hear the CT on the chest is a good move. When you say a Brain MRI and Abdominal CT and a bone scan. Are these three separate scans that she should have done right away? For instance can the abdomen CT be done at the same time they are doing upcoming CT? Should they press to have ...

We have just gotten news on our little KJ's scan schedule. I would really appreciate input and advice as to the direction the oncologist is going with this next scan. They have scheduled the next scan for November. It will be a CT with contrast and focusing on her chest / lung area. So I think this ...

Kat, So sorry to read your story. I feel grateful that KJ has been so fortunate in her surgeries. No infection and no complications. I will be in touch for sure! FINAL PATHOLOGY; CLEAR MARGINS!!!! We are elated and enjoying this great news tonight. Her drain will be removed Friday and back to school...

Ivan, I have been very upset with this initial surgery. I am mostly angry the pediatrician inserted herself and diverted them from Primary Children's Medical Center oncology to some one SHE preferred to work with at another hospital. I am sorry for the pain it caused her, and your situation as well....

Debbie, thank you for your kind words. I am sure I will be here a lot.

Olga, If you mean the scans that have been done, we started with a ultrasound, then a CT scan then the MRI with contrast and finally a PET/CT. Her oncologist the surgeon and the pathologist were all in on the final consult with the results and said the scans to follow will be MRI with contrast. If c...

Hello Everyone, I have been lurking around here since my sweet little 6 year old grand daughter was diagnosed with ASPS on August 29th. This process has been a blur, but of course I have been desperately trying to learn about ASPS and what I find is really very frightening. My daughter noticed a sma...