Complex endometrial hyperplasia with atypia
Hello all. I had a hysteroscopy recently after an ultrasound detected a mass in my uterus. During the procedure, the Ob/Gyn said everything in my uterus looked good, but biopsies were taken, and boy was I shocked five days later when the results came back and I was referred to an oncologist and being told I needed a complete hysterectomy. My results were as such: Complex endometrial hyperplasia with atypia (endometrial intraepithelial neoplasia, EIN) occurring within an endometrial polyp.
I"m slowly coming to terms with the fact that I need to have major surgery. I am soon to be 50, never had children, and am probably in early stages of pre-menopause. My oncologist is recommending a full hysterectomy, including ovaries and also lymph nodes closest to the uterus, due to the fact that 40% of these types of hyperplasia are due to underlying cancer. I am a little hung-up on the removal of ovaries and taking the lymph nodes right away. What if I am in the 60% and no cancer is found? My oncologist recommends this so I wouldn't have to go right back in and have the ovaries and lymph nodes removed if they do find cancer. On the one hand, I do not want to go immediately into surgical menopause, and worry about the higher risk of dementia, heart disease and bone health from removal of ovaries. On the other hand, I don't want to worry about developing uterine cancer later. Has anyone been in this situation and have any advice? I am so grateful for this message board. Thank you and sending healing to everyone here.
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I read through your email and had to respond as I had the very same diagnosis and was asking myself all of the questions you are asking yourself.
I had no real bleeding just a blood tinged tissue on occasion but I followed up with my gyn and had an ultrasound which showed a uterine polyp. The uterine polyp was removed which came back with no abnormal cells but the random biopsies came back with Complex endometrial hyperplasia with atypia (endometrial intraepithelial neoplasia, EIN).
I had the surgery as it was highly encouraged by the gyn/onc surgeon.
During the surgery the tissue looked good and the entire uterus, tubes and ovaries came out in one piece. My husband had encouraging news. However on the pathology report I had + lymph nodes and > 50% myometrial invasion.
I am now receiving my first chemotherapy. It is just one story but I think you should have the surgery. The earlier the better. All the best to you! I hope your are among the 60% without cancer. Blessings!
@meandmsjones I'm wondering if you had an endometrial biopsy in the office or if you had a D & C (dilation and curetage) with the hysteroscopy in a same day surgery? In a D & C more endometrial tissue is removed and pathology has more tissue to examine. My gynecologist was surprised by my results as he thought it would be hyperplasia. But it was endometrial cancer (endometrioid adenocarcinoma) and so I had a hysterectomy.
This is a difficult decision for you to make especially with the likelihood that you will go into surgical menopause after a hysterectomy. Would you like a second opinion? I recall in another discussion that you thought your insurance may not pay for a second opinion but this is you and your body so if you haven't already asked this is the time to do that. You could ask your gynecologist to make a referral for another opinion too. Here is the link if you think you'd like to go to Mayo Clinic for another opinion. You can self-refer and in the meantime check with your insurance too.
Thanks so much for your response, I truly appreciate you. I do not think I had a D&C; I was in office, and I was dilated. But I think it may have just been a biopsy. She took three biopies; one of the cervix ( fragment of benign endometrial polyp), one of the endocervix (fragments of benign endocervical tissue) and one of the endometrium (Complex endometrial hyperplasia with atypia (endometrial intraepithelial neoplasia, EIN) occurring within an
While my Ob was in there, she said everything looked good, and she didn't think what they saw on the ultrasound was even a polyp, she said it just looked like some tissue that was stuck in my cervical canal. Due to my many biopsies and two leeps, the opening to my cervix is quite small, so I also had a lot of scar tissue and some backup in my uterus. So again, was pretty surprised to see the results. I have had no further imaging or bloodwork done, and the oncologist did say they would not do more imaging. The ultrasound did show what they believe is a cyst on my right ovary, but they also are telling me it looks normal. So the recommendation is to move forward with a full hysterectomy, ovaries included.
I did call my insurance yesterday and Mayo is covered, so I a going to try to get an appointment, I am just not sure I can get the second opinion in time before the surgery. I don't want to delay the surgery as I have accepted that a hysterectomy is the best course of action, it's the concern about the ovaries and lymph nodes, with no real time pathology at my medical college.
Thank you for sharing your story, it does carry a lot of weight. I appreciate you sharing your very personal experience, and I am sorry to hear that you have to have further treatment, but I pray for you that this takes care of it.
Did you have to wait for your pathology report? Were you at Mayo?
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.
@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. ❤️
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.
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.
Trish, did you learn anything more yesterday or do you have to wait until Monday?
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 😒.