High Grade
June 26th, 2011
Friend Diagnosed with High Grade Connective Tissue Sarcoma?
She is 30. From what I understand it is very rare. They are not giving her much more information than what I have already told you here. My question is how deadly is this? I am finding conflicting information. It is a mass on the outside of her esopogus. They gave her no information in the form of what stage it is in. They just said it was high grade. Can someone tell me something more about this kind of cancer?
Make sure that your friend is being seen by a sarcoma specialist or at a cancer center that specializes in sarcoma. This is critical for the best chances of survival. High grade sarcoma is treatable but is very rare and needs the expertise of a center that specializes in the disease.
Sarcoma Centers
http://sarcomaalliance.org/centers.html
As for the staging information, sarcoma is ‘staged’ according to groups . . so the fact she is high grade most probably means it is advanced. Those are just semantics though . . because staging and groups are used primarily to determine the best course of treatment.
She needs to find out the specific name of the sarcoma . . if possible she should have samples sent to experts who can identify the sarcoma. There are over 60 different subtypes of sarcoma but there are people who specialize in identifying this disease.
I would suggest that your friend or whoever is advocating for her care visit the following websites and join some of the mailing lists. She will discover a wealth of information and tons of support.
Sarcoma Alliance
http://sarcomaalliance.org/
People Living with Cancer: Sarcoma
http://www.plwc.org/portal/site/PLWC/menuitem.6067beb2271039bcfd748f68ee37a01d/?vgnextoid=9367ea7105daa010VgnVCM100000ed730ad1RCRD&vgnextfmt=cancer
NCCN: Soft Tissue Sarcoma
http://www.nccn.org/professionals/physician_gls/PDF/sarcoma.pdf
ACOR: SARCOMA: The General Sarcoma (Cancer) Online Support Group
http://listserv.acor.org/archives/sarcoma.html
Best wishes to your friend.
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