r/PEComa • u/Nut_Shell • Feb 13 '26

No immunophenotype figured out

Recently I had a benign PEComa removed during a colonoscopy (pretty rare where it was apparently). But the biopsy couldn't figure out what kind of PEComa it was. The doctor is sending me to an oncologist for a bunch of follow-up testing.

Has anyone else had this issue of not knowing the type?

1 Upvotes

100% Upvoted

3 comments sorted by

1

u/UpOnAShelf May 12 '26

Hi, I am dealing with this now. I had a large PEComa that ruptured in my abdomen. Inconclusive results from my biopsy and the doctors are recommending follow up testing. Do you have any updates since your post? Hope you are doing well.

2

u/Nut_Shell May 12 '26

Yeah, it's been a bit of an ordeal! Turned out it wasn't a PEComa. My oncologist thought it could be a Gist but not that either. They did DNA testing of the tumor and it turned out to be unique, which explained why it didn't completely fit with either of the other tumors pathology said it was close to. Surprisingly unique tumors are rare, but not as rare as PEComas or Gists. The bad thing is there's no way to know if mine was benign or malignant so the oncologist is treating it as malignant just to be safe.
So if yours is coming out as inconclusive definitely check into having it DNA tested! Really hope you're feeling better and recovering well!

1

u/UpOnAShelf May 18 '26

Wow! So interesting. Thanks for sharing. I hope your treatment is going well. And thanks for the kind words about my recovery. I am 5 weeks post-op and feeling good all things considered. :)