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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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No CT scan, no immediate US upon my initial complaint. from my gyn despite my age and risk profile. My PMD ordered it a month latter. No ca 125, no PET scan after my diagnosis to look for active sessions. I did get a CT of the chest, abdomen and pelvis which has 2 concerning findings. That is why I requested the PET scan. My 2 friends who are being treated at the university cancer center in my area both received and continue to receive surveillance PET scans. I am on the wait list to transfer my care there after one chemo treatment. I will now have medicare and an excellent PPO so more choices. They did do blood work (CBC and comprehensive panel) and an EKG prior to surgery .
Hi drk. Looks like we will be going through this journey together! Wishing you peace and wonderful medical care a you move forward on your journey. Let us know what your oncologist recommends. I'll be curious to hear how it may differ or be similar.
I can tell you I am age 49, soon to be 50, and still having regular periods. I have always had regular periods with no real issues as some people do. I was recommended complete hysterectomy, cervix and ovaries too, as well as lymph node removal (two closest to uterus). It's the most aggressive treatment path. I have done my research and have a list of questions to go back to my surgeon with, and am seeking a second opinion from Mayo. My surgery is scheduled for Oct 17th. I'm a hot mess to say the least as this was all so unexpected, and I am concerned about long term health effects of having no ovaries, and balancing that with the risk of cancer. Sending you peace as you head into your appointment.
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2 ReactionsChristie,
Did you get a CT scan? My doctor said there was no reason to do one, and I'm disappointed in that. I would think they want as much info as possible for the surgery. I'm also getting concerned that insurance might decline my surgery without it. I had my pre-op yesterday and they were not even going to do any bloodwork before my surgery. I have no idea where my estrogen/progesterone levels are going in. I'm frustrated to say the least. All I can do is be at their mercy while I keep trying to advocate for myself.
Thank You!
Good morning,
Ask for a CT of the pelvis and abdomen with contrast. Its quick and might expedite your care and diagnostics.
All blessings,
Christine
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
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1 Reaction@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?
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1 ReactionI 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?
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2 ReactionsOh, 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.
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