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Complex endometrial hyperplasia with atypia

Gynecologic Cancers | Last Active: 6 days ago | Replies (34)
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@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

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Replies to "Hi emmyelle, Since the pathology report showed simple hyperplasia without atypical, I have opted for ultrasound..."
emmyelle | @emmyelle | Jan 3 5:14am

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.

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emmyelle | @emmyelle | May 3 4:01am

@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.

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