Cure Alveolar Soft Part Sarcoma International (iCureASPS)

To check if there are any brain mets, ASPS patients have to have a MRI scan, CT scan is not sensitive/specific enough and PET scan will not show anything small. Some insurance companies or oncologists do not offer to ASPS patients to have their brain checked by the MRI due to a high cost but start from the CT scan. It may have a devastating consequences for the ASPS patient.
There are some articles to support the need for a MRI scan based on a high risk for the brain mets especially if there are lung mets present:

1. Brain metastases in musculoskeletal sarcomas.
http://www.ncbi.nlm.nih.gov/pubmed/10379335
"Patients with alveolar soft part sarcoma, Ewing's sarcoma, rhabdomyosarcoma and pulmonary metastases have a high risk of brain metastasis."

2. Brain, the last fortress of sarcoma: similar dismal outcome but discrepancy of timing of brain metastasis in bone and soft tissue sarcoma.
http://www.ncbi.nlm.nih.gov/pubmed/21714120
Among 611 sarcoma patients, 20 (3.3%) developed brain metastasis. Alveolar soft part sarcoma (ASPS) and osteosarcoma were the most common subtypes. Overall, the cumulative incidence was 3.9% at 5 years and 8.4% at 10 years. However, the incidence in STS patients continued to rise up to 10 years after primary diagnosis, whereas it reached a plateau in bone sarcoma patients at 3 years. Median PBMS was 1.67 months. Univariate factors associated with better PBMS included ASPS histology, initial surgical treatment, and brain irradiation for non-surgically treated patients.

HI Olga,
I thought i would also re post this reply to a patient that also shows brain mets can pop up man many years later and how important it is to scan even if you are stable or NED...

""Re: Help finding this case "NED no chemo no radiation was use"
by Olga » Sun Jul 19, 2009 11:53 am

Alveolar soft part sarcoma: an unusually long interval between presentation and brain metastasis.
http://www.ncbi.nlm.nih.gov/pubmed/8253458
Department of Surgery, University of Colorado Health Sciences Center, Denver 80262.

While alveolar soft part sarcoma is an uncommon soft tissue tumor known for late metastases to lung, bone, and brain, and interval of 33 years between primary presentation and development of brain metastasis has not been described. We document a patient with a removal of an alveolar soft part sarcoma from the pectoralis major muscle at the age of 10 years, a lung metastasis at the age of 31 years, and brain and renal masses at the age of 43 years. The patient received surgical resections each time, but never radiotherapy or chemotherapy. He is currently alive and well. Immunohistochemistry, karyotypic analysis, flow cytometry, and gene expression were analyzed on primary tumor and established cell cultures in the hopes of further elucidating the histogenesis of this unusual neoplasm.

my comment - in my personal opinion this is the case of an extremely slow growing ASPS with the limited number of the metastasis that were feasible to completely resect, so no chemotherapy approach is totally good for that as it would have not worked anyways."""


I am going to try and bump the original post,,,
Ok i cant bump it can you so others see how long it took please