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endometrial hyperplasia with atypia endometrial hyperplasia with atypia

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Unread 06-01-2008, 02:23 PM
endometrial hyperplasia with atypia

Hey everyone!

I'm new here, a friend pointed me in this direction. Got my test results back, (uterine scraping) was having the bleeding after sex and a couple of very long periods. Been going on for just about a year I guess, thank goodness it's not been longer as I've read some of you having that issue.

The diagnosis was that I've got endometrial hyperplasia with atypia. Doctor recommended removing the uterus because of the pre-cancerous cells that were found. She's said it would be my choice to keep my ovaries or not. If I don't keep them it's total hormone replacement and that bothers me (I'm 40 this fall, still a few years before menopause I hope). Cervical smear came back as normal and so everything is so far so good there.

Anyone have that option when preparing and thinking about having the uterus removed? What were your thoughts on keeping them?

Thanks so much! This board looks like such a great place and lots of information is available. My surgery date is not set yet, waiting for the hospital to get back with me with a date. Then have to be cleared by my PCP (and whatever else this whole thing entails).

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Unread 06-01-2008, 03:29 PM
endometrial hyperplasia with atypia

Hi, StaceyLouWho. I love your username!

I'm pretty much in the same position as you - 40 years old, atypical endometrial hyperplasia with a recommendation for a hysterectomy. My doctor isn't planning to remove my ovaries unless something appears to be seriously wrong with them. Ideally I'd like to keep them, since I'm very leery of synthetic hormones and would probably not do HRT for that reason. I'm not sure what I'll do if they have to go. Either look at bioidentical hormone replacement, or learn to live with early menopause.
Unread 06-01-2008, 08:31 PM
endometrial hyperplasia with atypia

Hello StaceyLouWho & SeriousBlack,

I'm so sorry both of ya'll have this problem. It's a scary diagnosis with Hyperplasia with Atypia being a precancerous state.

Have either of you consulted a gyn/oncologist? If you haven't, I'd suggest that you consider doing so.

The reason I'm suggesting this is from my own experience. When my hyperplasia with atypia was found, the first plan was to have a laprascopic hyst by my local gyn. But, I went home and thought about it over the weekend and then asked for a oncologist consultation.

Along with seeing the oncologist, my biopsy was sent to be read again at the cancer center. The oncologist told me that I could have the lap with my local gyn, but if it turned out to be cancer, I would later need a second surgery for staging.

As I was having great difficulty accepting the need for one surgery, I sure didn't want two.

And it turns out that the rereading of the biopsy showed that the hyerplasia was indeed cancer.

Another bit of news that you may not want to hear.. I was told that because my type of cancer was most likely fed by estrogen, that my ovaries needed to come out too. Espescially since the uterus, tubes, ovaries, etc all share the same blood supply.

Now here's the good part.. I had not started to enter menopause according to blood hormone levels, but I have not had any nightsweats, hotflashes, or other bad symptoms.

Now that I am more than 6 months out from surgery, my gyn/onc says I can take some Estratest if I want to.. but I'm still thinking about it.

Please consider seeing a gyn/oncologist if you haven't already. And come post on the cancer concerns board if you want. There's lots of us with the hyperplasia with atypia experience there.

Best of luck to you both.
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Unread 06-01-2008, 08:38 PM
endometrial hyperplasia with atypia

Hello, ladies. Looks like we're all in the same boat. My D&C last December showed complex hyperplasia with nuclear atypia. My gyn put me on progesterone, which helped some according to my latest biopsy, but he has recommended a hysterectomy. He said in half the cases, there is a hidden cancer that doesn't show up in the pathology reports. Yikes! I'm waiting for his office to get authorization from the insurance and for a date at our local hospital. This site has so much information; it's almost overwhelming. I talked with a woman at church this morning who had a hysterectomy two years ago (she kept her ovaries). She was a good person to talk to--very positive about her recovery. My situation is different from yours as I've already gone through menopause; started bleeding spontaneously five years later. I have to ask my gyn what he's planning to take; my guess is the whole deal, given my age (61) and situation. Good luck to all of us!
Unread 06-03-2008, 07:21 PM
endometrial hyperplasia with atypia

Just got my date today: June 18. Sure seems more real now. My assistant editor at work is freaking out, which sure doesn't help. She's just going to have to step up!
Unread 06-03-2008, 08:23 PM
endometrial hyperplasia with atypia

Mine's the 16th, and oddly, I feel more focused and less freaked now that I have a date nailed down. Today was my first visit to the hypnotherapist who's hopefully going to get me through this with the smallest possible number of panic attacks, so maybe that's what's making me feel more in control of things.

I figure I've got at least another week before the nervousness sets in again.
Unread 06-03-2008, 09:04 PM
same boat

I'm in the same boat, but I am older (53). I still haven't gone thru menopause yet and when I have my surgery, I presume it will put me there.
Unread 06-05-2008, 03:48 PM
endometrial hyperplasia with atypia

Hello everyone, I just found out in January that I had Complex Hyperplasia with Atypia and there was also cancer. I have been taking provera and have had 3 D & C's. With the last one my doctor told me it came back clear. No Cancer and no Complex Hyperlasia with Atypia. Everything looks good. I still have to take the provera now because she told me that my lining was so thin now that she doesn't want me to bleed. When I go back I will have to have another ultrasound to make sure everything still looks good. I am keeping my fingers crossed. If its back then I have to have a hysterectomy and I want kids bad. I have been trying for 3 years. I hope everything goes okay for you all and I will keep you in my prayers. Miracles do happen.


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