1. < Gynecologic Cancers

Complex endometrial hyperplasia with atypia

Posted by meandmsjones @meandmsjones, Sep 19, 2022

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.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

sbt19 | @sbt19 | Jan 2 7:02pm
In reply to @emmyelle "Hi @grace58, @sbt19 I too have been diagnosed with hyperplasia with atypia. One biopsy result confirmed..." + (show)
@emmyelle

Hi @grace58, @sbt19 I too have been diagnosed with hyperplasia with atypia. One biopsy result confirmed hyperplasia without atypia, the other, taken during a hysteroscopy, confirmed hyperplasia with atypia.

I have had second opinions and all are recommending hysterectomy. I had an IUD fitted at the time of the hysteroscopy procedure and my uterine lining has reduced from 11.67 to 6.15 in 2 months, which is encouraging although atypia can persist even if the hyperplasia reduces.

For the past 11 years, I have had extremely heavy bleeding and have been regularly anaemic. The IUD has resolved the heavy bleeding too.

Excuse the lengthy details, however, I was curious about your non-surgical approach.

I appreciate owing to the high % of people that have concurrent cancer, or go on to develop cancer within 5 years, why the gold standard is a hysterectomy, particularly as for EAH or EIN/ Stage 1A it’s considered ‘curative’.

Worth mentioning, I have none of the risk factors such as: obesity, diabetes, never having children nor genetic history of uterine or ovarian cancer. I am 45 years old which is relatively young for a hysterectomy.

The lack of exploration into the cause (most likely unopposed oestrogen) means there could still be an issue which could impact other areas of the body. One consultant recommended the Dutch + test and exploring BHRT (bioidentical hormone replacement).

I would like to hear how you’re getting on and to how you navigated opting for a conservative approach vs surgery.

It would be great to hear from anyone else who either opted for a hysterectomy (preserving the ovaries) or decided to reject surgery.

Feeling very apprehensive about it and don’t have a long time to make a decision as my operation is scheduled in 7 days time.

Jump to this post

Hi emmyelle,
Since the pathology report showed simple hyperplasia without atypical, I have opted for ultrasound every 6 months and did increase my progesterone to 400 mg per day and stopped the estradiol patch completely. Yes, the hot flashes did return but not as frequently or intense. My last 2 us showed my lining is still 8 mm—has not decreased, but has not increased either. I have not had any type of discharge since my d & c, so I think I’m good. My gynecologist still thinks I should have the hysterectomy, but until I have discharge or my lining gets thicker, I’m not having surgery. One worry is that it seems even stage 1 will reoccur in the vaginal cuff. Since they remove the uterus through the vagina, I wonder if cancer cells may be shed there as they pull the uterus out. Another concern is organ prolapse when so much is removed. Lastly, I had a right hemicolectomy in 2016 for stage 1 colon cancer. The surgery was curative with no chem or radiation. My surgeon was excellent. I had no change in bowel habits or digestion. It’s hard to believe I even had the surgery. Therefore, I do not want a gyno surgeon going in and possibly messing everything up.
Since you have hyperplasia WITH atypical, that is a little more serious, so it might make more sense for you to have the surgery. I would rather have surgery and avoid chemo/radiation.
Hope this helps.
Sherry

REPLY
2 replies
emmyelle | @emmyelle | Jan 3 5:14am
In reply to @sbt19 "Hi emmyelle, Since the pathology report showed simple hyperplasia without atypical, I have opted for ultrasound..." + (show)
@sbt19

Hi emmyelle,
Since the pathology report showed simple hyperplasia without atypical, I have opted for ultrasound every 6 months and did increase my progesterone to 400 mg per day and stopped the estradiol patch completely. Yes, the hot flashes did return but not as frequently or intense. My last 2 us showed my lining is still 8 mm—has not decreased, but has not increased either. I have not had any type of discharge since my d & c, so I think I’m good. My gynecologist still thinks I should have the hysterectomy, but until I have discharge or my lining gets thicker, I’m not having surgery. One worry is that it seems even stage 1 will reoccur in the vaginal cuff. Since they remove the uterus through the vagina, I wonder if cancer cells may be shed there as they pull the uterus out. Another concern is organ prolapse when so much is removed. Lastly, I had a right hemicolectomy in 2016 for stage 1 colon cancer. The surgery was curative with no chem or radiation. My surgeon was excellent. I had no change in bowel habits or digestion. It’s hard to believe I even had the surgery. Therefore, I do not want a gyno surgeon going in and possibly messing everything up.
Since you have hyperplasia WITH atypical, that is a little more serious, so it might make more sense for you to have the surgery. I would rather have surgery and avoid chemo/radiation.
Hope this helps.
Sherry

Jump to this post

Hi Sherry @sbt19

Thank you so much for getting back to me and for sharing your experience. Glad to hear that your colon operation was successful and that you haven’t had any complications or associated issues since.

I will go ahead with the hysterectomy owing to the concurrent rates of Stage 1 and likelihood of progression to cancer, I was hopeful there could be a less invasive approach 😔

It makes sense to consider spreading of any cancer cells too, as my Obgyn mentioned that’s why they need to be careful when removing the uterus through the abdomen. My procedure will be performed laparoscopically with removal through the vagina.

Not sure if it’s helpful, however, in relation to your hyperplasia without atypia, all the Obgyn consultants I have spoken with recommend progestin treatment via an IUD or oral progestins. I’m unsure as to why they are recommending a hysterectomy for you? Perhaps it’s owing to your medical history.

Hoping your condition improves and thanks once again for taking the time to reply, it’s been very helpful.

REPLY
emmyelle | @emmyelle | May 3 4:01am
In reply to @sbt19 "Hi emmyelle, Since the pathology report showed simple hyperplasia without atypical, I have opted for ultrasound..." + (show)
@sbt19

Hi emmyelle,
Since the pathology report showed simple hyperplasia without atypical, I have opted for ultrasound every 6 months and did increase my progesterone to 400 mg per day and stopped the estradiol patch completely. Yes, the hot flashes did return but not as frequently or intense. My last 2 us showed my lining is still 8 mm—has not decreased, but has not increased either. I have not had any type of discharge since my d & c, so I think I’m good. My gynecologist still thinks I should have the hysterectomy, but until I have discharge or my lining gets thicker, I’m not having surgery. One worry is that it seems even stage 1 will reoccur in the vaginal cuff. Since they remove the uterus through the vagina, I wonder if cancer cells may be shed there as they pull the uterus out. Another concern is organ prolapse when so much is removed. Lastly, I had a right hemicolectomy in 2016 for stage 1 colon cancer. The surgery was curative with no chem or radiation. My surgeon was excellent. I had no change in bowel habits or digestion. It’s hard to believe I even had the surgery. Therefore, I do not want a gyno surgeon going in and possibly messing everything up.
Since you have hyperplasia WITH atypical, that is a little more serious, so it might make more sense for you to have the surgery. I would rather have surgery and avoid chemo/radiation.
Hope this helps.
Sherry

Jump to this post

@sbt19 Hi Sherry,

I hope all is well with you. I thought I’d post an update below for anyone who finds the post.

I felt very uncomfortable having the hysterectomy and opted for regular monitoring, which is out with the recommended guidelines and not best practice.

However, 9 months since the insertion of the Mirena IUD, I’m pleased to report that my uterine lining is < 5mm and both D&C and hysteroscopy biopsies have confirmed no hyperplasia and no cancer.

My biopsies have been taken at months 4, 6 and one upcoming biopsy to be performed at month 9.

The Obgyn consensus is that if the results remain clear for 12 months, I can move to 6 monthly biopsies for a further 12 months (or more).

I wanted to post my journey here in case it benefits anyone, but to stress that the advice is there for a reason with 40% of patients with atypical hyperplasia having concurrent cancer.

As endometrial cancer is linked to excess oestrogen, I’m about to have DUTCH + testing to evaluate my hormone and cortisol levels which I hope will provide more insights and help avoid any future issues by enabling me to take action sooner.

REPLY
sbt19 | @sbt19 | 6 days ago

Hi Emmyelle,
I understand not wanting the hysterectomy. It is wonderful that the iud progesterone has been successful. Good for you for making your own informed decision about treatment. We are not algorithms; we are intelligent women who can weigh the options and make the choice we are most comfortable with.

My next US is in June. If my lining is still at 8 mm, I will ask about switching to the iud from the progesterone pills. I am still pissed that my gyno did not tell me to stop the estrogen patches. I made that decision on my own. She also never mentioned the iud progesterone option, either. I still do not have any type of discharge since my d & c in March of 2021, so I think I am good.

Thank you for sharing your experience. Doctors seem to default to their own preferences when recommending treatments, so it is helpful to hear from others how they have faired with alternative treatments. Medicine’s “best practices” are not always the best for every patient.

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