Large Desmoid Tumor in Abdomen (Agressive fibromatosis)

Posted by jer3536 @jer3536, Jan 24, 2023

I have been diagnosed with a large Desmoid Tumor in my Abdomen. Thought I was a candidate for embolization but the tumor is not vascular enough to embolize following an attempted procedure. Does anyone have any experience with a Desmoid Tumor? The Oncologist at another hospital wants to start Chemo.

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Colleen Young, Connect Director | @colleenyoung | Jan 26, 2023

Welcome @jer3536, according to this article from Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/desmoid-tumors/diagnosis-treatment/drc-20446388, there are several treatment options for desmoid tumors.

Did you discuss the pros and cons of chemo vs surgery or radiation with your team? What are the specifics of your tumor that point to chemo? Or is it chemo first to shrink the tumor before surgery?

jer3536 | @jer3536 | Jan 27, 2023

In reply to @colleenyoung "Welcome @jer3536, according to this article from Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/desmoid-tumors/diagnosis-treatment/drc-20446388, there are several treatment options for..." + (show)

Hello. Radiation isn’t an option due to the size of the tumor(8 in) in diameter. They tried embolization and it wasn’t vascular enough as there wasn’t a dominant vessel. Univ of Chicago says to go with Doxil to reduce it. Rush says no chemo since it’s not vascular chemo won’t work and my body at this point won’t be able to withstand the chemo for the entire phase. The interventional radiologist said it has grown in the last 30’days which is between the two biopsy’s.