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Old 04-09-2007, 07:03 PM   #1
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Heidi07 HB User
Atypical endometrial hyperplasia

Hi, is there anybody out there with the HNPCC gene and has/had endometrial/ovarian cancer or problems? A few weeks ago I was told that I have atypical endometrial hyperplasia and the gynaecologist recommends a hysterectomy. I have been told that my risks for developing cancer are very high as I carried the HNPCC gene. I am 44 years old.
I am desperate for contact with someone who is or have been in a similar situation. Did you have a hysterectomy? If so did you have your ovaries removed because of the risk of ovarian cancer? How long did you wait before having surgery?
Anyone who has or had endometrial hyperplasia, what treatment have you had?

Last edited by Heidi07; 04-09-2007 at 07:17 PM.

 
Old 05-11-2007, 01:35 PM   #2
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xtine64 HB User
Re: Atypical endometrial hyperplasia

HI,

I'm not sure what hpncc is but I was diagnosed with endometrail cancer Stage1 Grade A, I went on Megace for about a year and finally got rid of the cancer. 1 yr of being cancer free my recent biopsy read Atypia Hyperplasia, My doctor is going to do another D&C and then decide to take the ovaries or not. Originally I was told when I first got diagnosed that they would keep the ovaries. So we'll see what happens. Have you talked to you doctor about doing a D7C and going on Progestrone?

 
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Old 05-14-2007, 05:26 PM   #3
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Heidi07 HB User
Re: Atypical endometrial hyperplasia

Quote:
Originally Posted by xtine64 View Post
HI,

I'm not sure what hpncc is but I was diagnosed with endometrail cancer Stage1 Grade A, I went on Megace for about a year and finally got rid of the cancer. 1 yr of being cancer free my recent biopsy read Atypia Hyperplasia, My doctor is going to do another D&C and then decide to take the ovaries or not. Originally I was told when I first got diagnosed that they would keep the ovaries. So we'll see what happens. Have you talked to you doctor about doing a D7C and going on Progestrone?

 
Old 05-14-2007, 05:55 PM   #4
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Heidi07 HB User
Re: Atypical endometrial hyperplasia

Hi,

Thanks for your response. Sorry to hear about your cancer and now atiypia hyperplasia. Is Megacs a drug?

On my last consultation 10 days ago I did ask about trying alternative treatment before surgery. Doc said 'treatment' is not what is appropriate because I do not have cancer, not yet! At present, hysterectomy is 'strongly recommended' as a prophylactic treatment or preventative measure. Unfortunately, whatever procedures or drugs I try, nothing can change the fact that I have a faulty gene (HNPCC) which put me at 40-60% risk of developing endo cancer and 60-80% of colon cancer.
When (its just a matter of time!) I have the the hysterectomy I will have the ovaries removed because I have a cyst or fibroid attached to the right one. There are questions now as to whether this cyst could be sinister, no way of knowing until surgery, apparently.
I am waiting for the result of 2nd biopsy and ovarian cancer screening CA125 and appointment to have MRI scan to see the cyst/fibroid.
I am already booked to have the next biopsy in August. God willing, my body can wait till then.

Hope all goes well for you!

 
Old 05-26-2007, 10:25 AM   #5
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Anita4260 HB User
Re: Atypical endometrial hyperplasia

Xtine64

I wanted to ask you.......before/after you got diagnosed with endome-
trium cancer, did you have an MRI with and without contrast? & if you
did, what did it read?..... I know its not an official test for diagnosing
cancer, but the doctors, do them....please can you tell me, if you did
have an MRI and what did it say that it saw or found.

Thanks!

 
Old 05-29-2007, 05:55 AM   #6
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Join Date: Oct 2004
Posts: 109
Kickle HB User
Re: Atypical endometrial hyperplasia

Hi Ladies,
I too am 44 years old and have exactly the same problem. I have had 2 paps and both the same results. My Dr. wants to do the ablation (sp) but I am having pain and cramping daily. I am going to get a second opinion. I will let you know how it goes.

Last edited by Kickle; 05-29-2007 at 05:56 AM.

 
Old 07-18-2007, 03:03 PM   #7
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Location: newcastle upon tyne england
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gail1959 HB User
Question Re: Atypical endometrial hyperplasia

Hi Everyone
I'm new here and have been reading all your posts with great interest.
I had 2 abnormal paps 18 months apart..YES i know i was supposed to go back for a repeat pap 6 months after the first abnormal one, but i figured it was just a blip and stupidly didnt have a 2nd for a further 18months. that came back abnormal too. I was then refered for colposcopy where i found out that the pap had in fact picked up abnormal cells in my cervix which actually had originated from my uterus.it was those that was causing concern.After a further biopsy of my uterus and debate about what the abnormal cells were i then went on to have a hysteroscopy and D and C.
Then a 2 week agonising wait for the Path results. Well i got those today and have been told i have Severe ATypia Hyperplasia grade 2. Iv been led to believe this is a pre cancer. Iv also read that many people that have this actually have uterine cancer when path is done afer hysterectomy. Does anyone know anything about this?. I was told today also that my Hysterectomy is scheduled for 4th sept 2007 . I am 48 years old with 3 children and in the perimenopause. I was also told last week that i have Diabetes. So i got a double Wammy so to speak. I had absolutly no symptoms of any problems with my bits at all so was quite shocked. I will be having a laparoscopy procedure to remove everything including my cervix and ovarys.I cant really talk to my family as they tend to be reserved on these matters.

 
Old 10-26-2007, 05:29 PM   #8
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Heidi07 HB User
Re: Atypical endometrial hyperplasia

Hi,
I have just read your posting after many months of absence from Healthboard. Sorry to hear you have hyperplasia too. I hope by now you have had surgey and hopefully no cancer.
I finally, after lots of tears and counselling, had sugery on Sept 6. I have not been give any bad news yet and still waiting for my post op consultation.

Last edited by Heidi07; 10-26-2007 at 05:32 PM.

 
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