We were just told that my 9 year old granddaugter could have one of the two trypes of cancer and not sure what all this means. Malignant Fibrous Histiocytoma or leiomyosarcoma - all I know is what I read on the internet. Hershey is to contact with a day to go there. I am hoping to go to John Hopkins, Any information any one can share will be appreciated.
I would suggest that you get a second pathology
opinion from the foremost sarcoma pathologist in
the country, that would be Dr. Sharon Weiss at Emory University, Atlanta, GA. She takes the patient’s slides and analyses them and gives your
oncologist the right type of sarcoma. The following
link goes to her web site, and click on "consultation"
and fill-out the form -
There are different treatment decisions to consider
for the leomyo- or mfh type of sarcoma.
If you need any more info, or have a question -
please e-mail me at - stan5577@earthlink.net.
And get treatment ASAP!
Stan
Metastatic malignant fibrous histiocytoma since 2000
Your oncologist should ask if she would like to participate in a clinical study as part of the Cure Search Children’s Oncology Group. If you agree and she qualifies, then a biopsy sample would be sent to their central pathology review and looked at by several pathologists. They would then give you a more specific diagnosis of her soft tissue cancer.
See curesearch.org for more info.
For children, oncologists follow a specific protocol which would direct her treatment. This protocol is the same across the country and would be followed in any treatment facility.
Stay strong and take care.
Liz
Here is another excellent link for childhood sarcomas
from the National Cancer Institute -
You have my best prayers/wishes for successful
treatment.
Stan
Pseudosarcomas Of Soft Tissue -
See - Not all tumors are malignant…
This is why we have misdiagnostics, etc.
Stan