Complex endometrial hyperplasia with atypia

Dear Colleen,
Insist they get a pelvic CT with contrast.
It quick and may give additional insight that might direct your care in a more expedient way.

All blessings,
Christine

@drk. Is your appointment this coming Friday, on September 30? It's really good that you got in for an appointment so quickly with a GYNOncologist. I'm hoping that they will provide you with good explanations and options for you to consider. It's possible that the GYNOncologist may order more tests to get a clearer picture of what's going on and how to proceed.

I know from experience how frightening this is. How do you take care of yourself when you are worried? Warm baths, going for a walk, visiting with close friends? Do you have someone you can talk with who is a good listener?

I seem to have unexpectedly found myself in this very similar situation…. So I’m a little overwhelmed. I’m 69, been menopause since 35 without problems.

Mentioned odd pelvic feeling in June at PCP physical - no symptoms or real complaints. Had an Ultrasound that showed 7mm uterine thickening, , so was sent to gyn for vaginal ultrasound follow up after 2 month wait… now 12 mm and 2 ‘cystic structures’ …. NP offered in office biopsy or out patient D&C, choice of referral to one of their gyn surgeons or referral to gyn oncologist- and told me to expect a hysterectomy!

I chose to just have appt with the oncologist Friday - after some reading others experiences, and treatment options Im ready to just get the hysterectomy. I guess my question is can I hope for that to be done without more tests/biopsy after the removal?

Oh, that is frustrating to say the least. Sending tea, a cosy blanket and loads of gentle hugs - all virtually of course.

Hi Colleen,
Unfortunately, I waited on results for 2 days only to be told that she didn't get enough tissue!!! 2 biopsies...how? Anyway, will need D&C to get deeper biopsies and scrape the thickened 12mm endometrial wall.
It's frustrating 😒.
Kinda disheartened.

Trish, did you learn anything more yesterday or do you have to wait until Monday?

All the best to you!
It is good to get a second opinion even if you hear the same thing. I think a CT scan of the pelvis would be helpful. I am not sure why they didn't order one but I wish they had and also had done a ca 125 as well..... at least to trend over time.

Thank you for this this is super helpful. I definitely feel like there are a lot of things that weren't explained to me at this point. Now that I'm looking at my ultrasound results I see that my endometrial thickness was 7 mm. And it did say I had a slightly enlarged uterus but nobody ever focused on that part of my ultrasound results or talked to me about what it all meant. I had one biopsy come back as the atypical complex hyperplasia next thing you know I'm going into have everything removed. I definitely want to be on the cautious side and do not want to have cancer so have accepted that a hysterectomy is probably the best course of action but I'm definitely seeking a second opinion at this point.

@meandmsjones hi, I am going to follow your story as I had 2 uterine biopsies yesterday and curious if the one taking biopsies is right. My vaginal ultrasound showed 12 mm thickness. Less than 4mm is normal. So she said at least a D&C but won't know until Friday or Monday when biopsies are back.
Love and hugs to you, waiting is so hard. ❤️

Hi!
I may try to expedite an option at Mayo Clinic . The pathology report came back in a week. My surgeon did not order the ca 125 assay or do any pathology evaluations during surgery. If she had the surgical approach likely would have changed.
I might add the the hospital where I received my care has a policy where they do not release the official report for 6 weeks. After my complaints it was released in 4. Every other institution in my area releases the pathology reports within 3 days. Go to Mayo if you can.