complex hyperplasia with atypia

I have been dealing with getting my hyperplasia with atypia under control for the past year. The lining of my uterus has been very thick over the past year. To date, I have had 4 biopsies and a D&C to keep an eye on the situation. After my D&C, my doctor put me on Megace, because she wanted me to be able to keep my fertility (I'm 35). For six months, I was put on 40mg of Megace, which did seem to thin the lining of my uterus. I am know on a progesterone-only birth control and not on the Megace any more (taken off Megace in September 2004 - my biopsy report came back well enough at that time that my doctor put me back on birth control). Unfortunately, my last biopsy showed "Complex hyperplasia with atypia. Focal areas suspicious for invasive carcinoma".

My ob/gyn is recommending a hysterectomy at this point. She is sending me to a gynecological oncologist, however, at the end of this month. I am glad she is wanting me to talk to someone else to get their recommendation.

Is my doctor "jumping the gun" or has anyone else out there gone through this same thing?

I'm wondering if maybe I should be put BACK on the Megace, at a higher dosage, or maybe have a progesterone iud inserted?

Sorry for the long thread, just looking to see how someone else handled this.

Hugs!

Hi I've moved your post over here to the Cancer Concerns forum. I don't have experience with complex hyperplasia with atypia, but this is the place where you're most likely to find ladies who have had their hysts for this reason.

Good luck with your decision!
s,
-Linda

I am glad you're going to see a gyn/onc...really think that's the way to go. I was diagnosed with complex hyperplasia w/atypia, and the path report noted a few areas looked suspicious also. Those areas turned out to be stage 1 adenocarcinoma (1st stage of endometrial cancer) and the good news is that it's all gone and I won't have chemo or radiation. I WILL have to have yearly PAP (I think the doc called it a pap, but I've read here that it is really a sampling of the vaginal vault). I am a lot older than you, so having more than 1 D&C was not attractive to me. I really didn't enjoy it that much! Good luck.. Your doctor is not jumping the gun here, I think.

Hi Katie


I too was diagnosed with Atypia Complex Hyperplasia/Early stage 1 endometrial cancer. They told me mine was very borderline. I was refered to a Gyn Oncologist right away and The oncologist confirmed early stage 1 & has been treating me with Megace. I am on a much higher dose. I started at 160mg and within 2months went up to 240mg a day. I am 31 yrs old and my husband and I would like to have a child, so we elected the route of trying the Megace. My Dr. said I could be on the Megace for up to 9 months having a biopsy every 3 months. I think if the Megace does not show improvement then of course the best thing is a hysterectomy. Your regular Gyn is the one who treated you with the Megace and you have not seen an Oncologist yet?

I think the best thing to do is to see an Oncologist as soon as possible.



Wishing you the best of luck
Please keep us posted
Your in my prayers

Tricia

Last November I had a TAH/BSO due to thickened uterus lining. Prior to the op I had a hysteroscopy, D & C and biopsy, plus CT and MRI scans which showed abnormal cells.

My gyn didn't give me any options, I was told I needed a total hysterectomy. She had consulted with a Cancer Team all the way through these tests so I was confident with her recommendations. Also, i'm 47 so didn't need to preserve my fertility which obviously made it a lot easier for me.

When the path report came back after the hysterectomy it showed severe atypical hyperplasia with adenomyosis. My gyn told me that it was very close to cancer and that i'd had a "close call".

I was so grateful that i'd been well advised to have a hysterectomy, otherwise I would have been dealing with something much worse a few months down the line.

I hope things go well for you and that you can decide on what to do next with your gyn/onc.

I wish you all the very best, and will say a prayer for you that things go well.

Please let us know how you go on.

Geraldine

Hi Katie,

I had the same issue as you last year and at the same age too. I just could not get the C.H.w/Atypia under control with the drug therapy. After one biposy, several D&C's he also suggested a hyst.

I also consulted an oncologist and was very glad I did. SHE was wonderful and provided lots of insite. They are the experts; so you are on the right track. I did not get to my decision easily or lightly. I think it was the hardest decision I have ever had to make in my life.

I had both of them present at my surgery just to be safe. I could no longer handle the emotional craziness with the drug therapy and just could not go the rest of my life looking over my shoulder (so to speak) and worrying about "what if".

Surgery was the right move for me...but every one is different and has to do what is right for themselves. I wish you luck on your journey. If you have questions; feel free to PM me.

Many hugs,

I'm sorry I forgot to mention that I did see this same oncologist last year, who agreed with my doctor to put me on megace to get this under control.

Sorry I forgot to mention that. I see the same oncologist on the 28th.

Tricia:
I hope that everything works out for you. I have recently had a hysterectomy (March 4) and I am 31. I went to see my doctor due to the battle of horrible pain and monthly cycles that had no end.
At the time he could not do a pap due to bleeding. I had went the whole birth control and D&C route. He suggested that I have a hyster with removal of my right ovary. I was a little scared. My husband said that he thought it was better for my health and not to worry about fertility.....sometimes I think that is easier for men.
Anyway, I went ahead with the surgery and the biopsy came back and sure enough Stage 1 carcenomia. Thank God that I went ahead. My doctor told me that had I waited 5 years I would
have been in trouble. I am suffering emotionally from the decision but I don't think that your doctor is jumping the gun and I think you should see the oncologist and see what they say.
I wish you the best of luck and my husband and I will keep you in our prayers.....
God Bless You!

I'm 44 and had the exact same diagnosis! And I also consulted with an Onc/Gyn, who read my path report and said - don't wait, have the hysterectomy NOW. So for me there was no more decisions to be made, a complete abdominal hysterectomy with both ovaries was done 10 days ago. My patho came back a few days ago, stage 1 adenocarcinoma, thankfully the cells hadn't penetrated the uterine wall. So no further treatment is needed.

I know if I was your age I probably would try anything/everything to keep my uterus, but once those cancer cells start making an appearance in your pathology, albeit not harmful yet - you need to do the smart thing and have the uterus removed. Those cells aren't going to disappear, they are going to continue to grow and eventually turn into something much more harmful.

Just my 2cents ...

I was diagnosed with Complex Hyperplasia without Atypia but decided immediately on a hysterectomy. My maternal Aunt had died of endometrial cancer and that was the road I was headed on - No questions for - take it out and be done with it. I couldn't take having a d&c every 4 months and wondering if I was going hear that awful word.

Obviously you have to do what you feel is right for you but if it were me - I'd have a hyst.

Good luck with whatever you decide.

Julie