Complex endometrial hyperplasia with atypia

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

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?

@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?

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

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

Thank You!

Christie,

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.

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.

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 .

greetings to you, I am the mother of a soon to be 36 year old daughter recently diagnosed a few days ago, with the same diagnosis. they removed a couple polyps, etc. thought all would be maybe precancer hyperplasia, but not the atypical etc..recommendation is hysterectomy, also offered iud progesterin, she has no children, never married to this point anyway..lot to swallow and we are still in process as you wraping our heads around the diagnosis. just thinking for her to do progesterin for a bit, few months, then probably hysterectomy, I was about 50 developed early endometrial cancer, and had total hysterectomy, after having 2 children...I am upset very much for her, I will tell her to ask her gynecologist for oncologist referral but probably will say the same as yours...but agree with your statements...will read the rest of this website and blog, just found it....concerned mother