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Endometrial Hyperplasia with atypia Endometrial Hyperplasia with atypia

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  #1  
Unread 12-15-2010, 02:32 PM
Endometrial Hyperplasia with atypia

I posted this in the area.

Hi, I have been reading for awhile. I am 44 with a history of endometrial Hyperplasia with atypia. I had always had irregular periods and seen doctors on a regular basis with always normal paps and no complaints. It wasn't until my mid 30's that I got married and decided that I would like to get pregnant. That is when it was discovered that I had PCOS and Hyperplasia with Atypia. I did 6 months on Megace, DC, and biopsies. I then was able to go down the infertility route. After trying for 2 years to get pregnant, we decided that we were happy with just us. It was such a stressful time! So I went on the pill to keep everything in check. Now, I am 44 and have annual biopsies. They have all come back normal. I had an ultrasound about 2 weeks ago and it showed my lining was 15mm. That really scared me. However, I did start my period a week later, but I scheduled a biopsy afterward anyway. So here is my dilemma, I am thinking that I am a good candidate for a hysterectomy. My latest byopsie came back negative. My mom had endometerial cancer. I will not be using my uterus. I don't think it is doing me any good, other than stressing me out. I have an appointment on Friday to discuss hysterectomy with my gyn. Do you think I have valid reasons? I am just looking for some unbiased opinions.

Thanks,
Robin
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  #2  
Unread 12-17-2010, 07:21 AM
Re: Endometrial Hyperplasia with atypia

(((Robin)))

I don't have any personal experience to share, but have you consulted a gyn/onc (gynecological oncologist)? They are the experts for gyn cancer/pre-cancers and might be able to provide further insight for you.

It is a tough decision. Do your research, get as many opinions as you need, then, listen to that little voice inside. She's pretty smart.


monami
  #3  
Unread 12-17-2010, 03:22 PM
Re: Endometrial Hyperplasia with atypia

Well, I was all ready to go in today and talk to her about a hysterectomy. However, yesterday I heard from the person that I had interviewed with 6 weeks ago and he wanted to know if I was still interested in the position! So today, we discussed if it was safe for me to wait before I have surgery. My latest biopsy came back negative. She put me back on the pill. I did discuss the surgery with her a little. She says that she would take the cervix. I have read mixed reviews on that. She told me that she doesn't usually take ovary/tubes in women younger that 45 unless compromised. I will be 45 in 2 months, and have a history of cysts. I am relieved that I don't have to deal with this right now. I know that I am 33% more likely to get endometrial cancer and I know that I will get a hysterectomy eventually. I personally think that it would be in my best interest to do it sooner instead of later. So in the meantime, I will keep researching!

Thanks
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  #4  
Unread 12-17-2010, 05:26 PM
Re: Endometrial Hyperplasia with atypia

Sounds like a plan. I know you'll remain proactive in your care. We're here if you need us!
  #5  
Unread 01-04-2011, 10:35 AM
Re: Endometrial Hyperplasia with atypia

Hi;

You are lucky your atypia went away! I wish mine never came !!!

I started out with simple/complex (no atypia), went to simple (no atypia), then to "no endo tissue found?" and lastly it turned to atypical hyperplasia (no mention of simple or complex). I did Megace for 3 months for each diagnosis. I am presently on progesterone to keep it from proliferating, until I get my surgery date. Yes .. the dreaded hysterectomy. Tried to avoid it.

For sure keep getting tested, because as they say "one never knows". Especially if you get a thick lining like that. Mine was 18mm when I had the atypical dx and only 10mm when I had the simple dx.

Keep your eyes open and I hope you got the job!!

Donna
  #6  
Unread 01-04-2011, 02:07 PM
Re: Endometrial Hyperplasia with atypia

It sounds to me like you have a good plan.

FWIW, this is my history with endo cancer: I was diagnosed with PCOS around age 40. I had irregular periods with heavy bleeding. I used BCP to control the bleeding until my insurance would no longer pay for it. Around age 46, my bleeding got significantly worse with marathon periods, blood gushing continuously for 2-3 months. My PCP would give me progesterone to stop the bleeding.

A year ago this month, I asked for a referral to a gyn for endometrial ablation. Transvag US showed my lining was too thick. Gyn recommended hysterectomy - uterus, tubes, ovaries, leaving cervix intact. She did an endometrial biopsy which showed no signs of cancer.

I had the hyster. After surgery, the pathology report came back with cancer in the endometrium and on one ovary. They said it had not gone into the uterine wall yet. Gyn referred me to gyn-oncologist who recommended staging surgery. Staging showed that the cancer had gone all the way through the wall of the uterus and into the fatty tissue behind it.

Since then, I've been told that endo biopsy can miss cancer if your lining is thick and/or you're having heavy bleeding at the time. I don't know how accurate that is but it makes sense in my case.

End of my history.

To make a long story short, I agree with your thought that it's wise for you to have a hyster sooner rather than later. I strongly recommend seeing a gynecological oncologist prior to surgery. If your gyn does the procedure and cancer is found, you could end up needing a second surgery. The gyn-onc might want to do the hysterectomy or be present when your gyn does it.
  #7  
Unread 01-04-2011, 02:29 PM
Re: Endometrial Hyperplasia with atypia

My endometrial biopsy showed atypical hyperplasia and some areas "suspicious for adenocarcinoma". The gynecologist and my primary care physician both referred to me as having endometrial cancer. I'm still a little confused about that presurgery diagnosis, but I guess "suspicious for adenocarcinoma" was the determining factor. I'm 63 and postmenopausal.

I was referred to gyn oncologist who said there was a 30-40% chance of it being cancer given the pathology of the biopsy. I was hoping it wouldn't be cancer, but it was. The gyn oncologist did the surgery and staging. While it was early stage - Stage 1, Grade 1, it had grown 1/3 of the way into the uterine wall and I'm so happy we didn't wait any longer for the hysterectomy as it would have continued to grow. A little farther and I would have needed to have chemo and/or radiation. I'm also very pleased that I was referred to gyn oncologist for both the consult and surgery.

Perhaps getting a second opinion from a gyn oncologist would be a good idea before deciding to wait or not.

Suzanne
  #8  
Unread 01-04-2011, 02:38 PM
Re: Endometrial Hyperplasia with atypia

Iowa: What is the time frame between when your heavy bleeding started, taking progesterone, ablation, your false biopsy and your dx of cancer? 2 years? 3 years?

They say that endo cancer is a slow growing cancer (5-10 years) which makes me wonder about things (in my case).

I have only had a pre-cancer dx and it's been 2 months since that.

And .. you are another one with surprise ov cancer too. Did you ever have your ovaries checked prior to surgery (when they checked your lining)?
tx
  #9  
Unread 01-04-2011, 09:51 PM
Re: Endometrial Hyperplasia with atypia

I had heavy bleeding for probably 10+ years but it got significantly worse about 2-3 years prior to hysterectomy. I took progesterone about 3 times in a 2 year period (for 5 days at a time). The last time was about 4-5 months before my false biopsy. The biopsy was in February and my hysterectomy in March. The cancer diagnosis came about a week after my hyster.

I had a lap surgery about 10 years prior to cancer diagnosis. Appendicitis was suspected but it turned out the pain was caused by a large cyst on my ovary. Doctor drained cyst and took samples for pathology which showed nothing suspicious. I had 2-3 ultrasounds in the 10 years prior to hysterectomy. They always showed ovarian cysts which were considered benign (from PCOS).

I had pap smears every 2 years (as often as my insurance allowed) and nothing suspicious ever showed up on them. My last pap had been 2 years prior to hyster. My gyn was supposed to do a pap the day she did the biopsy but forgot. She did a pap the day of my hyster and it showed glandular cells.

The 5-10 year time line sounds right to me. My endo adenocarcinoma is grade 1 - the least aggressive kind - so I'm willing to bet it was there for years before it was found.
  #10  
Unread 01-05-2011, 06:47 AM
Re: Endometrial Hyperplasia with atypia

Thanks Iowacat...

I guess the chemo was for the ov ca then.

I'm glad you got things taken care of before they were worse!

Donna
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