Complex Hyperplasia with Atypia

[Emma9]

Hello, I was just diagnosed yesterday with Complex Hyperplasia with Atypia.  I am 50, and in peri.  It started with excessive bleeding for 2.5 months.  I had an ultrasound that showed my endometrial lining was 21mm followed by biopsy.  I was put on BC for oa month to try to balance things out.  It made me feel awful! They took me of of it yesterday, after confirming my biopsy results, and being estrogen dominent.   I have about a month wait to hear from a cancer clinic, and then a couples of weeks to wait for an appointment.  My dr. warned me that the results are based on the biopsy, and they don't know if there is any cancer cells above or around it.  They won't know for about 6 weeks until they do a CT scan.  I am debating weather or not to get a CT on my own, and if it would make any difference.  I also don't know if it would speed my treatment up, or if the clinic would want to repeat the CT, and I don't want to be exposed to it twice.  We have a huge history of cancer in the family.  My Mom died from breast cancer, and had a complete hysterectomy when she was 38 not sure the reason other then excessive bleeding.   I may need a total hysterectomy as well depending where things are at after the CT.   My Dad also died from cancer as well as other relatives.  They are putting me on progestrone just to get me through until I have my consult.  I am looking for information on other peoples' experience in dealing with this.  What did you do moving forward? How many people have been diagnosed with complex hyperplasia atypia, then found out they had cancer after hysterectomy? Thank you!

[Katekat]

Hi @Emma9, how are you doing this week?

Sorry to read what you've been going through, did you come to any decisions about the CT scan?

Everyone is entitled to a second opinion, so I would certainly encourage you to seek that if you are feeling worried in any way, shape or form. If you are finding you can't voice/get your medical team to understand how you're feeling, do you have a family member or friend who could advocate on your behalf perhaps? Another thing you could perhaps do would be to write down everything you are concerned about and take that with you to the next appointment, so you can refer to it.

Here's a great podcast that you may like to listen to around managing fear in relation to cancer. There's also another on making treatment decisions that may be of interest.

Sending love 

-Kate

Cancer Council Online Community Manager

[Solfuego]

Hi Emma, I also just be diagnosed with uterus hyperplasia atypia. The doctor said I would need a hystercomy to remove my uterus or I would need radiation to kill the bad cells. The doctor also stated that there is 40 percent chance I already have stage 1 uterus cancer. I am not sure why they would want to do a catscan, cause about 2 weeks ago I had a catscan and it showed I had nothing at all. I would suggest you to go to a other doctor cause the only cure for  uterus hyperplasia atypia is a hystercomy or radiation. I myself really dont want to have a hysercomy but I also dont want to take the chance it is going to form into cancer. Also the doctor told me in 3 to 6 mths if I dont get my uterus removed I well havee uterus cancer. I would suggest you to see a other doctor. Have a blessed day.