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Atypical Endometrial Hyperplasia Atypical Endometrial Hyperplasia

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Unread 07-26-2009, 07:17 PM
Atypical Endometrial Hyperplasia

I am 31 yrs old with no kids and a great husband. i was diagnosed with severe atypical endometrial hyperplasia and the pathologist said he couldn't absolutely rule out an existing cancer. I have a 40% chance of there already being a cancer at the time of hysterectomy.

I have two options

1. 3 months high dose megace and re D&C and try for one pregnancy - 84% cure rate ( I also have Lupus which makes me a high risk pregnancy)

2. Immediate hysterectomy- almost 100% cure rate

So I have to make this huge decision based on a maybe, kinda, sorta.

I am leaning towards the hysterectomy but so freaked out at the permanence of it and all the horrendous side effects I have heard.

Most worrisome for me are the emotional/mood side effects.

I am on Paxil now for OCD and anxiety and I wonder if that might protect me from some of the emotional side effects or if my previous history leaves me at an increased risk for them.

Sorry for rambling I am just so worried and freaked
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Unread 07-26-2009, 07:52 PM
Re: Atypical Endometrial Hyperplasia

Well that would be such a tough decision. I can't give advice, only what I would be tempted to do... which is of course try the therapy and have one child. However, knowing what i know now, I can't even say what I would do. My pathology from d&c came back as complex atypical hyperplasia... at least I thought that was what it was until I found out there were two pathologies done and the other one showed adeno carcinom in situ. So here I am already with a cancer dx and waiting for my hysterectomy to find out how far advance it really is. So I am living in fear right now and just want it OUT of me. Can I ask how did you get the dx, by biopsy or d&c? Also, have you been trying to get pregnant already? If some time had already gone by without successfully conceiving, what options do you have that might help you be successful very soon? I just wish you the best and feel so bad that you are facing this tough decision. I'm sure the Lupus just makes everything that much harder... I have an autoimmune disease also, and pregnancies were really really hard on me. Anyway, I'm sure I didn't help much, no real advice, but just wanted to say I am thinking of you.
Unread 07-26-2009, 08:19 PM
Re: Atypical Endometrial Hyperplasia

Thank you so much for your response.

My initial reaction was to try for the pregnancy.

I'm not so sure anymore since I am so worried about the chances its already cancer and the fact that I am worried a pregnancy with Lupus is not ideal!!

Having Lupus increases my odds of miscarriage and clotting so its not even like I am guaranteed a healthy baby at the end. UGH!!!

I am just so freaked that if I have the hysterectomy and its not actually cancer yet that i will be devastated.

The biopsy was via D&C.

Its so confusing because the pathologist (second one) said its "quite severe atypical hyperplasia and one could reflect on the possible diagnosis of carcinoma in situ". Of course this was after talking to my reproductive endocrinologist who explained I was a 31 yr old with no children about to undergo ovulation induction.
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Unread 07-27-2009, 08:22 AM
Re: Atypical Endometrial Hyperplasia

I can't imagine taking all those hormone shots for ovuation induction knowing about your possible dx. Is the endocrinologist even willing to do this? If it were your daughter facing this decision, what would you advise her to do? You know you would say, get the surgery, your health is what is most important. But no one else has to deal with the consequences like you and your husband will. You are against a rock and a hard place, I know. I would do some deep prayer, and try to have some real quiet time and listen for God to answer. Say a prayer and ask for His guidance... and then when you get the answer, promise yourself you will procede with the decision and not look back with any regrets. I had a very very tough decision to make once when I was too young to make such a decision, and I thank God that I had asked for His help in the decision and only have peace with it now because I know I sought divine intervention. I don't know what your religious beliefs are, but I truly believe faith is most important in any situation. Again, this is a very unfair situation, but you know you are blessed that this has been found early. A year from now you may not have had any say in it at all... hyperplasia is very fast growing. Take care.
Unread 07-28-2009, 12:51 PM
Re: Atypical Endometrial Hyperplasia

Thanks, i am so confused. Went to a 2nd opinion who is a big head out of one of the major medical schools where I live and he suggests conservative treatment with megace based on newer guidleines. Who do I believe? I know I have a 40% chance that its already a stage 1 cancer (which he says is also now being treated with just meds) so I am so lost now.
Unread 07-28-2009, 01:58 PM
Re: Atypical Endometrial Hyperplasia

profpa -

I know this is so difficult but take a huge breath. Hyperplasia ia pre-cancerous. You are right there is a chance that there is cancer there but normally this is slow growing so you definitely have the chance to get a 2nd opinion.

The down side is that you have to sort this out and make the decision that you are most comfortable with, which is scary when you are confused and uncertain.

My humble opinion says get a 2nd and even a 3rd opinion, find the doctor that you feel comfortable talking over all your concerns with, do some research and make your decision.

A D&C is considered the best standard for finding cancer since you get more than a sampling of tissue. That's how my cancer was found. Ironically the D&C got all the cancer and all they found after the hyster was Complex hyperplasia w/ atypia (pre cancer).

Hysterectomy is permanent and you are young. I knew I had cancer and was still hoping to find a way out of the surgery because I knew what was coming (surgical menopause) and I'm much older than you.

I will send you and so you can find your way through all of this.

Unread 07-28-2009, 07:18 PM
Re: Atypical Endometrial Hyperplasia

Thanks so much.

The problem is that the biopsy report says "severely atypical hyperplasia and one could reflect the possible diagnosis of grad 1 carcinoma focally" so in other words it looks alot like it already is cancer. This was the 2nd pathologist to read it because the first wasn't sure if it was cancer or atypical hyperplasia.

The other issue is I am not really medically stable to be pregnant because of lupus and a host of other stuff.

I really appreciate the words of encouragement. I am considering another D&C since its been 8 weeks.

Where I live is only 1 other gyn onc but she is leaving so I dont want to start care with her.

Unread 07-28-2009, 09:11 PM
Re: Atypical Endometrial Hyperplasia

Profpa -

In that last post it sounds like you logically know your answer but your heart and mind are trying to catch up.

Sending you immense and prayers.

Praying you arrive at the best answer for your situation.

Unread 07-31-2009, 12:07 AM
Re: Atypical Endometrial Hyperplasia

Hi Profpa,

I'm in the same situation - no lupus, but I'm older than you are and have had a really hard time getting pregnant - my complex atypical hyperplasia (which is almost at the level of cancer too) was diagnosed during pre-IVF workup.

I too was offered both the Megace (plus Mivera IUD) for 6 months but I think I am going to go with the hysterectomy.

I'm working through similar issues to you :
- Very high risk of actually being diagnosed with cancer not just atypia at the time of hysterectomy (which is the only one that is really official).
- Very unsure that I can have a successful pregnancy (in the past years we've had a miscarriage, an ectopic, and many failed fertility treatments).
- I've read the studies on progesterone (Megace) treatment and the failure rates are pretty high (at least 25% of women) and the post-treatment pregnancy success is pretty low (around 25% of those who were successful) and with my age and history I'm not so confident I'd be one of the lucky ones. In addition, there are about 5% of women who are treated w progesterone who later have more advanced disease (beyond stage 1) which is MUCH more scary for long-term health than the atypia or in-situ diagnosis.

Balancing these things out makes it hard to see if in my own case the risk of the progesterone is worth it.

The option we are probably going to take is to do a simple hysterectomy (keep ovaries, at least initally) and as long as the pathology from the hysterectomy is clear (in situ cancer or still at the complex atypia level) then we would do IVF stimulation but use a gestational surrogate. It's complex and expensive, but it's safer, and I really believe we'll have more success with another woman's uterus and body than in mine. I do feel strongly the need to try once with my eggs, but if it doesnt work we would probably consider doing donor egg w gestational surrogate in the future.

Please feel free to PM me to discuss - I'm quite well read on the topic now (although can't help at all on the lupus issues).

I know it's a really hard situation -- you can see by my tone that I am using the words 'almost decided' etc even though I have a surgery date -- it's not an easy decision to take.
Unread 08-09-2009, 04:17 PM
Re: Atypical Endometrial Hyperplasia

Hi Profpa -

I was diagnosed with complex hyperplasia with atypia a year and a half ago. I was 40 then and trying to get pregnant so my doctor let me try to get pregnance for a year and just keep an eye on it - either a D&C or biopsy every 3 months to make sure it hadn't gotten worse. After a year of not getting pregnant and still showing complex hyperplasia with atypia my local doctor was insistent on a hysterectomy. I wasn't ready to go that route yet so I went to a gynecology oncologist instead for a second opinon. She put me on high dose Megace for 3 months. I just finished that 2 weeks ago and a week ago had another D&C. It came back completely clear and they've given me the go ahead to start trying to get pregnant again. I know getting pregnant at 41 definitely may not happen but I'm happy I still have the opportunity to try a little longer. I didn't have any trouble with the Megace at all. Practically no side effects but a little bit of weight gain.

Good luck with your decision! I know it's a hard one!!

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