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DX with Complex Hyperplasia Atypia . . . DX with Complex Hyperplasia Atypia . . .

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Unread 10-25-2009, 03:27 PM
DX with Complex Hyperplasia Atypia . . .

Hi, All!

Hope everyone is doing great! This is my first post. I'm 37 years old, married to a wonderful man for 10 years and have been able to travel the world. I have no biological children and have been diagnosed with PCOS since junior high.

I had a Laparoscopy and D&C done on 24 September and came out of that okay. But my pathology report came back with Complex Hperplasia with atypia suspicious adenocarcinoma FIGO grade 1. I know a lot to take in especially when you had no idea what it really is. My RE did an u/s and said my uterine lining was getting thick again. He thought I might have ovulated but blood test revealed that I hadn't. He started me on Megace (progesterone) and scheduled another appt. with him. Went back on 19 Oct. and said no improvement on my lining. Finally has reffered me to a Gynecologic Oncologist and will see him next week for some answers. I'm so overwhelmed by this and pray that all will turn out okay. Oh, had some more bloodwork done and my FSH was 3.77. At least that's good news! I'm wondering if anyone can give me some help on what questions to ask. They still haven't told me if it's cancer or not. Thanks so much!

God bless you all!
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Unread 10-25-2009, 03:41 PM
Re: DX with Complex Hyperplasia Atypia . . .

Hi. My situation was very similar to yours. Same diagnoses. My doc felt certain there was cancer in my uterus but couldn't tell me for sure until the surgery. During the surgery they do a "wash" and can usually tell right away if it's cancer. Of course, they send the samples off for testing as well.

They told me immediately after surgery that there was no cancer and then at my post-op the doc said it was one stage before becoming cancer.

I had tried Progesterone off and on for years but I didn't tolerate it well so I stopped taking it. My doc told me 12 years ago that a hyst was inevitable. It freaked me out so I never went back! Then my DH convinced me to do something about these heavy and long lasting periods so I finally did. Then I was told I had to have the hyst or cancer was going to happen.

Ten weeks later I am happy as can be! This was the best thing I have done in a long time, maybe ever! I feel so much better now!

Best wishes to you and I pray that all goes well for you.

Unread 10-25-2009, 03:47 PM
Re: DX with Complex Hyperplasia Atypia . . .

Thanks so much! I'm just a bit frustrated because I've been seeing my RE for fertility and this was dx. I'm praying the oncologist can give me some kind of treatment. Though if it's cancer then let's take care of it now. Thanks again for your support! Have a great day!
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Unread 10-29-2009, 01:00 PM
Re: DX with Complex Hyperplasia Atypia . . .

I had my davinci hyst after a diagnois of endometrial cancer. During the surgery it was found I had complex atypical hyperplasia with many foci along with the cancer, I also had a very large cyst on the left ovary. My friend had the dagnois of complec atypical hyperplasia with possible cancer. She had not had children and did not want her ovaries removed, standard treatment for both of these, She talked to many gyn/oco and was treated at a renown hospital, davinci hyst no ovary removal unless cancer. If cancer was found she would need to return to surgery and have her ovaries removed. her surgery was successful and NO cancer, she got to keep her ovaries. I mention this because if your fertility issue. Hope everything goes well.
Unread 10-29-2009, 02:14 PM
Re: DX with Complex Hyperplasia Atypia . . .

I had a D&C and hysterscope which showed the complex hyperplasia with atypia and some question of whether there might be cancer. The gyn/ onc felt strongly that complete hysterectomy with BSO was indicated. Pathology in the OR did not show cancer but the follow up showed stage 1A. Not the result I wanted, but other than the surgery and followup with the gyn/ onc for the next five years. Breathe deep and know that you are not alone. Peace
Unread 10-29-2009, 04:41 PM
Re: DX with Complex Hyperplasia Atypia . . .


I had a D&C that found a cancerous tumor. After my hyster the pathology of everything else came back pre-cancerous (complex hyperplasia w/ atypia). The D&C "got" all the actual cancer.

Some women find they start w/ pre-cancer but after the hysterectomy cancer is found. If you are interested in cancer staging this is a good description w/ illustrations endometrial cancer staging

Unread 10-29-2009, 08:51 PM
Re: DX with Complex Hyperplasia Atypia . . .

Thanks everyone! Today I found out that I do have Endometrial Cancer Stage 1 and have scheduled my hysterectomy on Nov. 17. I'm ready to take care of it and move on! God bless you all!
Unread 10-30-2009, 02:10 AM
Re: DX with Complex Hyperplasia Atypia . . .

Hi AZArmywife,

I was in a similar situation a few months back - endo cancer found in a pre-IVF workup.

I spent the last several months looking into the treatment options & risks & getting second opinions on the treatment & fertility sides both.

In the end, I declined the progesterone treatment (which is an option for low-grade stage 1 endo cancer) and did an IVF collection (all frozen) before having a hysterectomy (keeping ovaries). I'll use a gestational carrier (surrogate) for the pregnancy. It's a big undertaking & a complex process, but in the end it's do-able.

I felt so alone and hit by a double bus when diagnosed. All the resources saying endo cancer is mainly women 20+ years older, very little info on fertility sparing options. But I did find information and then here on HS there were (are) 3 women in the same boat. We have a thread here: https://www.hystersisters.com/vb2/sho...=379622&page=5
You're very welcome to come talk to us, we all know the double hit of the fertility loss at the same time as the fright of cancer.

Unread 10-30-2009, 02:22 AM
Re: DX with Complex Hyperplasia Atypia . . .

Thanks so much for posting that link. I went on it and found out more of an explanation of my dx, than any doctor has ever told me. Gives me a greater understanding of malignant cells in wash. I still can't help wondering if there is a link between polyps in the uterus and endometrial cancer... I have seen so many posts of HS that have had polyps only to be dx'd with cancer. My polyp was always benign, but kept growing back within a few years of taking it. Post hyst. I understood that it had actually grown from my uterus, down the endocervical canal and showed up "hanging" into the vagina.
Unread 10-30-2009, 08:51 AM
Re: DX with Complex Hyperplasia Atypia . . .

Hi, All!
I woke up today and it finally hit me. I can't breathe thinking about the surgery and how final it's going to be. I feel like I should have done something in the past to handle all of this but what could I have done.

Round, was it expensive to harvest your eggs? I haven't even thought of that. I'm just so focused on them taking it all out.


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