Atypical endometriosis

Hello, I was misdiagnosed via CT scan and MRI with stage 3C ovarian cancer when I went to the ER with pelvic pain due to a 11 x 10 cm mass on my ovary.  The scans also showed enlarged lymph nodes and nodularity in my omentum.  After surgery with a gyne-oncologist to remove the ovary and tube, it was discovered that I have severe endometriosis.  The endometrioma was removed, and they did a biopsy of the omentum.  The pathologist noted that the cyst lining had multiple foci and cytological atypia, although she did not that this was possibly due to erosion and repair.  The omentum biopsy came back as reactive mesothelial hyperplasia.  Can you help me understand these results?  How likely is it that the cells in the extensive remaining endometriosis are also atypical?  How likely is it that the remaining endometriosis will transform into cancer?  Is there a gyne-pathologist who can look at the slides and make a better determination as to whether the atypia is due to erosion/repair as opposed to pre-malignancy?  And what do the results of the omentum biopsy mean?  Thanks much.

[Annekathryn Goodman, M.D.]

Hi There,
Thank you for your important question.

First of all, how scary for you to think you had cancer and what a relief it must be to find out it is endometriosis.

Endometriosis is a benign gynecological condition . Under the microscope, the tissue of endometriosis looks like the same tissue found in the normal lining of the uterine cavity. The tissue the lines the uterine cavity is called endometrium. Endometrium changes in thickness and character over the 28 days of a menstrual cycles. It is stimulated, becomes thick and the sheds when a person does not get pregnant at the end of the cycle and has a period instead.

It is not known why this endometrial tissue is found in unusual locations such as the lining of the abdomen, the ovaries, the intestine, the belly button, and even really unusual locations like the lungs. One theory is that reverse menstruation happens and the endometrial tissue goes out the tubes instead of the vagina and 'implants' in the lining of abdominal structures.  One can definitely see this tissue bleed during a woman's period time. It can also cause pain or be completely without symtpoms at all.

Ok now onto your question: just as is true with other tissues, endometrium or endometriosis can become malignant. There my be a premaligant phase called 'atypical'

You are absolutely right. It is very important to get a consultation by a gynecologic pathologist who has extensive experience in gyn malignancies. You should ask your doctor to send your slides for evaluation to a pathology department with this level of experience such as: Mass General Hospital, Mayo Clinic, Armed Forces Institute, MD Anderson to name a few but there are many other great pathology departments around the country as well.

best wishes

[binkyb]

A related discussion, atypical endo cells was started.