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Complex endometrial hyperplasia with focal atypia Complex endometrial hyperplasia with focal atypia

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Unread 02-03-2006, 10:19 AM
Complex endometrial hyperplasia with focal atypia

I just turned 50. For about a year my periods have been irregular. I thought I was just going into menopause. In December I started my period but it lasted about a month. It was heavy at the beginning but not to bad. I had a transabdominal and transvaginal ultrasound done. Its showed a polyp or clot, hemorrhagic cyst and two simple cysts. About a week ago I had an endometrial biopsy done. It came back as complex endometrial hyperplasia with focal atypia. Does anyone know what “focal atypia” in particular means? I know that atypia means that the cells are abnormal and pre-cancerous. My gynecologist said I could take hormone therapy, do a D&C or have a vaginal hysterectomy. He would leave my ovaries. I thought at the time the hysterectomy would be the way to go, but now I am having second thoughts. I am so confused and scared. Also for a while now when I lay down to go to sleep I feel pressure in my lower abdomen. It feels like I have to pee and when I do it feels better. This feeling wakes me up a couple of times when I first go to sleep, but if change positions it feels better. Its not painful, it’s really hard to describe.
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Unread 02-03-2006, 11:10 AM
Complex endometrial hyperplasia with focal atypia

Dear oiseau,

I had that same diagnosis via a D&C. I was told that with this diagnosis, that a small foci of cancer is often suspected and can be discovered when surgery is done. In my case that was true and I ended up with endometrial cancer grade1 stage 1b.

Hormone therapy is usually not successful on 'older' women, although it is sometimes used for younger woman who want to maintain their fertility. But, it is often considered only a stop-gap measure and eventually a HYST is needed.

Catching cancer early is a huge factor in avoiding further treatment..such as chemo and radiation.

If cancer is found it is usually reccomended that ovaries be removed due to the fact that endometrial cancer is ( about 80% or more of the time) 'estrogen driven'. Ovaries are not left behind to continue estrogen production and possibly encourage a recurrence.

I made the mistake of having my regular gyn do my surgery. A gyn is not trained to sample lymphnodes and if more invasive cancer is discovered a second surgery is often needed ( by an onc/gyn) to go back and sample/remove lymphnodes. ( ugh!)

I am sure I am getting way ahead of what you wanted to know. We all learn as we go and it can be very overwhelming. I just wanted you to understand that this is complicated and their are serious implications that come along with your choices. Therefore, being as informed as possible is crucial.

However, my main point would be to highly suggest that you have a GYN-ONCOLOGIST review your case/give a second opinion. They are the experts where suspected cancer is concerned. If surgery is needed you should have them do it as well or at least be on-call/in attendence at your surgery. Again, I have seen a few times where a 'sister' will come back ( after surgery) and post that her cancer (or complex, hyperplasia with atypia) had been bumped up both in grade and stage of cancer on their pathology report and they now require a second surgery.

Please get that second opinion from a gyn/onc, before making such important decisions.... it is your body, your health.

I am not a doctor and am just giving my opinion based on my own knowledge and experience.

Hugs, Diane
Unread 02-03-2006, 01:19 PM
Complex endometrial hyperplasia with focal atypia

Bonjour Oiseau (and that's the extent of my highschool French!):

Diane has posted good advice, and as scary as it is, I think you need to understand all that you can prior to having surgery. It is really important to involve a gynecological oncologist if there is any suspicion of cancer. An endo biopsy can be helpful, but not always conclusive. I had two, and neither caught the small endometrial CA that I had.

As far as the abdominal pressure, of course it could be many things, but I had a lot of uncomfortable pressure that was relieved when my hyster was done. No more crossing my legs when I sneeze, or multiple trips to the bathroom at night. Much better.

Every woman on these boards has faced a hysterectomy, and most of us have gone through it and come out the other side healthier. It's normal to be scared. I hope your situation turns out to be a benign condition, but better to be prepared than caught unprepared.

Good luck, and please stay in touch.
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Unread 02-03-2006, 01:27 PM
Complex endometrial hyperplasia with focal atypia

I'm going to third consulting a gyn/oncologist, then go see another one.
Unread 02-04-2006, 07:05 AM
Thank you for your support

I wish to thank everyone for responding so quickly to me and with such wonderful advice. I took your advice. I called the MD Anderson Cancer Center and they asked for my report results, luckily I had them so I was able to fax them yesterday. She said she would have a GYN-ONCOLOGIST review them on Monday to see if they will take my case. I am going to postpone my surgery with my ob-gyn until I see the oncologist. I feel much better about doing it this way. Thanks so much for your kind advice.
I would like to suggest to everyone that when they go to their doctors they should always request a copy of their test results and keep them in a file. If I had not had copies of them I would have had to go through my ob-gyn office and try them to get the test results sent over. Doctor’s offices can be so slow sometimes. You and I can act much quicker.
I will keep everyone posted…
Unread 02-04-2006, 07:22 AM
Complex endometrial hyperplasia with focal atypia

I am glad to hear that you have contacted MD Anderson. Whenever cancer or a pre-cancer is suspected, you leave the hands of your regular docs and go immediately to the oncologists. If for some reason MD Anderson does not take you, you will leave with recommendations of oncologists in your area or information on how to look for a good one.

It is my understanding (I am not a medical professional) that focal atypia means that on the slides that were reviewed, the atypical cells were confined to very small areas of the tissue that was biopsied.

Good luck,
Unread 02-14-2006, 12:04 PM
Complex endometrial hyperplasia with focal atypia

I just wanted to give everybody an update. I just got back from my visit with MD Anderson Cancer Center. They are going to do my hysterectomy.
I had a hysterectomy scheduled with my gynecologist. He was going to leave my ovaries in. But I canceled my surgery with him because the pre-cancer (Complex hyperplasia with atypia) diagnosis really scared me. My gynecologist never even recommended that I even see a gynecologist oncologist. So I am really grateful to the ladies on this forum who have pointed me in the right direction to see a gyn-onc.
Discussing the surgery with my ob-gyn was so different than talking to gyn-onc. First let me say I feel I am in great hands at MD Anderson. They are very proficient, professional, understanding and caring. Even though I am completed scared to death they made me secure in being there. Even the lady at the information came over and talked to me, she said she was a 5 year survivor. She was diagnosed with uterine cancer. She helped give me courage. My husband came with me, without him I don’t know how I would make it through.
The onc-gyn said they would do all the staging and frozen sections during the operation. He wants to take everything out; he said at my age (50) I really didn’t need my ovaries. He also said that 1 in 3 women with this diagnosis have cancer.
I also have a pressure in my bladder. It’s uncomfortable and wakes me up at night. The gyn-onc is having me go to an urologist before the surgery. They are going to look inside my bladder and see if there is a problem. If there is then maybe they can do both surgeries at once. My ob-gyn said that when I had the hysterectomy that would probably fix my problem. However, I had a hard time believing that because on the one hand he said they were two separate issues and on the other a hysterectomy would fix it.
Well in one week I go to the urologist, then I have my hysterectomy. I’ll let you know how it goes… Thanks for all your support!

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