hi grade spindle cell adenosarcoma:

bburnsljl
bburnsljl Member Posts: 3
edited March 2014 in Sarcoma #1
Hi, My name is jerri and I have been treated at local hospitals and have had 5 metastases.I have had 5 surgeries, much chemo, radiation and brachytherapy. I am just now doing adriamyacin and ifofsimide after my 5th surgery 2 months ago. I have another tumor growing in same spot as they just took off, from my ct we just did. I have one more round of chemo (4 day continuous infusion).If tumor is still there after this next round and lesions on thyroid and atrophied pancreas like thgis last scan showed, I think I need to find a better hospital/dr.

Through 5 years of this now, I have found that medical science just isn't there with cancer, let alone hi gr. spindle celled adenosarcoma W/ sacromatous overgrowth. Does anyone know of a facility that might have some knowledge on this cancer? I am in Florida. Moffitt looks at me like I'm a freak. They have told me they have never seen an adenosarcoma so I might as well stay in Orlando, as they would do the same protocol. Surgery, chemo, radiation. I saw Dr. D'Amato and a Dr. Apte, and Dr. Wynam. They all look so baffled and scared. I'm not sure there is anyone who knows what to do.

Comments

  • jenmessley
    jenmessley Member Posts: 8
    look up a sarcoma center NOW
    Search online for a center that specializes in sarcomas. There are very few of them but they know how to treat this.It is very rare and needs special care. Read all the posts on this site for more info.

    Jennie