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Complex endometrial hyperplasia with atypia

Gynecologic Cancers | Last Active: Jan 3 5:14am | Replies (32)

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@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.

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Replies to "Hi @grace58, @sbt19 I too have been diagnosed with hyperplasia with atypia. One biopsy result confirmed..."

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