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complex atypical hyperplasia - confused! complex atypical hyperplasia - confused!

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Unread 04-15-2011, 04:33 PM
complex atypical hyperplasia - confused!

Ok, I can't stand it. I have been trying to wait until Monday (April 18th) -- that's when I go visit my gyno/onco, but the more I worry the more I can't stand it. Normal feelings, I guess, but oh so annoying!! Can someone tell me what "complex atypical hyperplasia" is? I found these explanations of each word, but it doesn't help me understand what the heck is going on down there!! I keep reading that that 'atypia' part is the bad news bear. I copied my back ground from my introduction post so you can read what's been going on. Anything you can provide would be completely appreciated!!

My background copied from my introduction post:
Well, period problems had plagued me for three years - yes, three years! I was bleeding all the time and dumb me just didn't want to deal with getting it taken care of. Finally, back in September of 2010, I went to my GP. She referred me to a gynocologist. After lots of blood work and ultrasounds and the promise of surgery.....the gyno quit practice!! So, in January of 2011 I started all over and went to another gyno who was prompt (to say the least) in getting things going. She did a pap and endometrial biopsy on the first visit! The pap came back a bit abnormal, she said, but the the biospy was all clear. However, she wanted to do a hysterscopy and d&c because she thought i had polyps. Since we were going to do those, I requested an ablation too and she agreed. (I don't have children and never wanted them. Oh, I love kids...and am a fabulous auntie. Some women can't understand me no wanting kids. but I know me and I've carefully thought about it and just never wanted them.) Anyhoo!! April 4th, I had my hysteroscopy, d&c and Novasure procedure. My gyno said she would call me in the next few days with the pathology of my polyp removal and d&c. Four days went by and she called to say that "it looked weird and needed to go to the consultant". Monday, April 11th, I'm at work and she calls. The first words are "Your uterus has to come out....and your lymph nodes too!" She said I have complex atypical hyperplasia. And they think it's cancer. I'm at work and she lays this nugget down on me. I began to cry, looked at my male boss and said "They're going to take my uterus!!" Now that I think back...his face was priceless! LOL He didn't know what to say. Okay, so then she says, you can't have the surgery at our local hospital, nor anywhere in the area. You have to go to this specific hospital 3 hours north of here. "You need to see an oncologist." Then she told me that it usally takes 2 weeks to get in to see this oncologist and then the surgery happens within a month. Her office called me back later that same day to tell me I have to see the oncologist THIS coming Monday, the 18th! Wow! That was quick. I do have a lot of questions written down so I don't forget them. I'm a concerned because I keep finding conflicting information about my three word diagnosis. I am anxious to speak to the oncologist to get clear and definitive answers. I hope he doesn't mind an inquistive patient because I will keep asking until I understand what the heck is going on. I'm oddly calm; maybe I'm just tricking myself into believing there isn't any cancer. I am okay with the hysterectomy -- I'm freaking tired of periods and bleeding all the time. OH!! I forgot to say..I'm 36 yrs old. I do have a tendency to ramble, so sorry this "introduction" is so long. I do love this site...I've found so much information that is relevant to me! Feel free to respond back. Hopefully, Monday I will find out the date of my surgery. Hopefully, it's soon. I'm so done with this whole mess.
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Unread 04-15-2011, 05:52 PM
Re: complex atypical hyperplasia - confused!

My situation is a little different from yours, but I had the same diagnosis of complex hyperplasia with atypia. I am 55, and had some very slight post menopausal bleeding. My family doctor ordered an ultrasound, which showed a thickened uterine lining. She sent me to a gynocologist, who did a biopsy. The biopsy result was complex hyperplasia (thickened endometrial lining) with atypia (atypical cells - abnormal cells which is precancer). I was referred to a gyn/oncologist and was told that I needed a hysterectomy. The gyn/onc told me that in 20% - 40% of cases with this diagnosis cancer is found. I had my hysterectomy 6 weeks ago, and was diagnosed with stage 1a grade 1 endometrial cancer. Since it was such and early stage and low grade (least aggressive), I do not need any further treatment. My gyn/onc did not take any lymph nodes during surgery because the tumor had only minimally invaded the uterine wall. Hearing the words precancer and cancer is very scary. I have found the sisters here have been so very supportive and helpful with all of my questions and fears. Hugs to you and good luck. Keep us posted.
Unread 04-15-2011, 06:31 PM
Re: complex atypical hyperplasia - confused!

It's basically "pre cancer" and there is a 30-40% chance of actually finding cancer at time of hysterectomy and staging. My story is pretty much the same as Apple 16 except I did have 17 lymph nodes removed and pelvic wash - all clear (except for the cancer in the uterus part).

I'm glad your appointment is so soon. Less time to fret. Be sure to take someone with you to listen, ask questions, and take notes. You'll be surprised how much you won't hear or remember.

Good luck. Be sure and check in here if you have any questions - and to let us know how you're doing.

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Unread 04-15-2011, 07:48 PM
Re: complex atypical hyperplasia - confused!

Hello Musikfox....
Your story sounds exactly as mine did 5 years ago. I was 39 and had exactly the same diagnosis, referred to oncologist, told to have surgery, etc. I unfortunately did not have children and had always told myself that I would give myself until 40 to have them, and I was not prepared for a hysterectomy before then. So I unfortunately did not have the hysterectomy and I had to agree to have a endometrial biopsy every 3 months, and if another one came back "abnormal" then the doctors wouldn't give me a choice about the surgery. Well, I managed to make it 5 more years (5 years of hellish periods) and my biopsy came back with the atypia again, and the docs wouldn't let me avoid the surgery this time. I had my total hysterectomy (davinci) 4 weeks ago yesterday, have done really well....and now I'm wondering why I ever waited. I still never did get to have any little ones....but now I realize I'm a great auntie and that just needs to be enough. Wished I would have done it 5 years ago...I would have had less misery! Good the docs....they really do know what is best.
Unread 04-15-2011, 08:14 PM
Re: complex atypical hyperplasia - confused!


Yes, the waiting stinks!

I'm very glad you're seeing a gyn/onc. They are the experts, and you certainly want the best for your health. You will feel a bit "better" once you've got a treatment plan in place and have your concerns properly addressed.

Please keep us posted on how you're doing. We're glad you found us!

Unread 04-16-2011, 03:51 AM
Re: complex atypical hyperplasia - confused!

Musikfox: Short of it... At 49, still having strong periods w/lots of bleeding, I was initially dx with complex hyperplasia after a uterine biopsy. Doctor said "out." This didn't make sense to me at all until I read up on it, and it showed a high percentage would turn into cancer, if it hadn't already. Actually, I was looking for alternatives, but at my age (pretty much beyond child bearing) everything I read agreed with the doc.

For staging purposes (as best as they can do prior to surgery) I had a D & C and hysterscope prior to the operation and they found beginning stage cancer, 1A1. The surgery took everything ...since nothing was ever going to be "used" or needed again, and to prevent other cancers from developing.

With this said, you still do need to talk to your gyn-onc. There may be other choices and considerations for a younger gal, even if you have decided against having children. But if you do have to have everything out then there is also much comfort and relief, on many levels, when it is over. I never had children, not by choice, but by happenstance (or lack of), and I am very okay with that too.

Wishing and hoping the best for you!!!
Unread 04-16-2011, 05:15 AM
complex atypical hyperplasia - confused!

Hi Musik!
I am glad you doind this site.
I'm 47 and also have complex endometerial hyperplasia with atyia and fibroids. I always had heavy periods, but about 18months ago they started to change...I thought peri-menopause. December 2010 I started to bleed or spot all the time. Had older friends tell me menopause. My GP suggested I go to an OB/GYN I procastenated because of the holidays. Didn't go to the ob/gyn until jan 2011 when I hemoraged. They put me on provera to stop the didn't work for me. They did an ultrasound and found the fibroids and the thickened endometerial. Biopsy showed complex atypia.yes it is pre cancerous. the dr was also a little concerned that my mom and aunt both had breast cancer and my mom later having colon cancer.apparently there is a study that says there is some corrolation. Have surgery scheduled for the 25th. They are doing a TAH/BSO (TAH=they are taking out the cervix, vagina. BSO= ovaries and fallopian tubes and will check the lymph nodes).
I am glad you are going to an oncologist.keep us posted.
Unread 04-16-2011, 10:24 AM
Re: complex atypical hyperplasia - confused!

*HUGS* thanks everyone for answering so quickly!! I just love this has sooo much stuff....stuff I didn't really think about.

I had Novasure after the hysterscope and D&C. That was April 4th. Should I still be cramping? And I'm still having pain on both sides in the region of ovaries. I know they didn't do anything to my ovaries during the procedure. It just concerns me! The bleeding as stopped so that's freakin' awesome! But, the discharge is still flowing strong. They said that might take a while to stop. I don't understand why I still hurt. Do you think the abalation would have "disturbed" the cancer (if that's what's in there?) Or just burned it right nicely?

Due to some circumstances, I'm going to ask for surgery quick. Get it over with. My gyn said they would do daVinci which I know has a faster heal time. I know not to push myself, but I would LOVE to get back to work and such 2-3 weeks out. I've ready many different stories (here) on how differently women heal and I'm not going to rush things, but need to be back quick.

Dinko, is there a correlation with this diagnosis and ANY other family history of cancer? Or just breast/colon cancer. Nearly every person on my Dad's and Mom's side has cancer or died from cancer. My dad died of cancer when I was a child.

Folky, do they stage during or after cancer? I had the endo biospy, which my gyn said was fine. The contents of my D&C (polyps) is what came back with complext atypical hypersplasia. So maybe if there's anything's early stages? How soon do I find out what the stage/grade (if any) is?

I'm sorry this is so long...but everything posted to me is SO helpful!!
Unread 04-16-2011, 11:16 AM
Re: complex atypical hyperplasia - confused!

Hi musikfox

In my experience the final staging can take up to 2 weeks because all the tissues that are taken during the surgery need to be processed and analyzed.
Unread 04-16-2011, 11:23 AM
Re: complex atypical hyperplasia - confused!

", is there a correlation with this diagnosis and ANY other family history of cancer? Or just breast/colon cancer. Nearly every person on my Dad's and Mom's side has cancer or died from cancer. My dad died of cancer when I was a child. "
Musix, My Drs both told me that there is some correlation between any reproductive cancers... so for me it is my mom's family with the breast cancer and now my possible endometrial cancer. Then I stumbled across that certain colon cancers and the endo/uterine cancer. You might want to look around the hystersisters site some more, or look at some of the threads. I have seen some have mentioned "lynch", apparently they can test if it is genetic. Maybe do a search for lynch.

Like you I just want my surgery in a hurry.. they already canceled it once. I'm just waiting out the next 10 days for the surgery. unfortunately, I am not a candidate for the DiVinci.

Keep us posted.

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