Lipogranulomatosis lymphadenopathy

Which subspecialty physician is recommended to treat this disorder?

Hello @kimber361, welcome to Connect. I attempted to do some research, but the information out there is a bit vague. However, from what I was able to find, it did seem this condition is often confused for a type of lymphoma, but it is not. If you don't mind sharing, how long ago were you diagnosed, and what did your provider who diagnosed you suggest for moving forward?

Welcome to MayoClinicConnect @kimber361 . I’m glad you found us. We’re a varied group of individuals who share our health experiences, give suggestions and support. We’re not medical professionals so we can’t diagnose or prescribe medications. But, we’re all here to help! You said that the lipogranulomatosis lymphadenopathy was noted on the surgical pathology report. What has the surgeon said about it? Have you been able to talk to her/him? The surgeon should know which sub speciality is best to follow your case. Since the lipogranulomatosis was found in the abdomen, I would suggest a gastroenterologist, but first, ask the surgeon. How did you do with the Whipple?

Hi @becsbuddy. Thank you for your suggestions. I recently spoke to my gastroenterologist & he said this disease is outside of his specialty. He didn't know which sub specialty physician to refer me to. My surgeon never mentioned anything about the disease to me. I was just recently sent a copy of the pathology report & it's how I found out. I'll contact his office next week to see if I can get some sort of referral. He may have just overlooked the report findings.

I had a Whipple Procedure surgery on 12/26/17. The Whipple pathology report indicated out of the 17 abdominal lymph nodes removed, 12 of them were positive for lipogranulomatosis lymphadenopathy, a rare lyposomal storage disease. I only recently obtained a copy of the pathology report so I could take it to one of my new doctors. My surgeon never mentioned anything about this disease. I'll be contacting my surgeon's office on Monday to ask about it & to see if he can give me the proper referral to a sub specialty doctor. I've spoken with my gastroenterologist & he informed me this disease isn't part of his specialty.

@kimber361, did your gastro mention or hint what specialty would be appropriate? There is a recent discussion on Connect about the Whipple procedure as well, https://connect.mayoclinic.org/discussion/hollyc-looking-for-a-discussion-on-treatment-after-a-whipple-procedure-for/.

Thank you. No, he did not. He seemed baffled & told me he's never heard of this disease.

I think it would be oncologist!