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Dx with Complex endometrial hyperplasia with mild atypia Dx with Complex endometrial hyperplasia with mild atypia

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  #1  
Unread 10-15-2005, 11:22 AM
Dx with Complex endometrial hyperplasia with mild atypia

I have had a very unusual summer. It started with a discharge all of the summer and then my breast became very painful and swollen. This is when I made an appt. to see my ob/gyn. The day before the appt. I started to spot. I am almost 56 years old and had not had any bleeding for about 2 years. He did a endometrial biopsy and then a D&C at the end of the week. Both came back with "complex endometrial hyperplasia with mild atypia." I have a date of Nov. 9th 05 for a complete abdominal hysterectomy with ovaries removed. I don't want to go throught with this surgery. I have had a 2nd opinion which was the same. I have researched and read about megace and all the ramifications of this type of surgery. I have spoken to someone at the HERS foundation and she thinks megace is appropriate. I need help, advice, opinions and experiences. Thanks
  #2  
Unread 10-15-2005, 11:49 AM
Dx with Complex endometrial hyperplasia with mild atypia

Hi Crangy Jo - I can sympathize with you. I was 54 when I started skipping periods (4 months worth) and then had a period for a whole month. Two weeks later started again and then went to the gyn (new female). Had sonogram and biopsy which came back simple hyperplasia w/o atypia. Had a D&C and several polyps removed. Went on Megestrol (generic Megace 20mg daily). Had repeat biopsies every 3 months which came back fine until Sept 04 when I had vaginal atrophy and was taken off the Megestrol. 4 months later repeat biopsy came back with complex hyperplasia but still w/o atypia. Doctor was pushing for a complete hyst. I wound up going to 2 oncol/gyn and another gyn. 3 doctors all said I need the hyst. The last oncol/gyn said he didn't think I did. So I opted to not have a hyst but had another D&C in March 05 which came back fine. Since then I had another biopsy in Sept and that was also fine. I'm still in Perimenopause as I had 5 days of light bleeding in Sept and I'm now 56.

I would suggest if you have not consulted with an oncol/gyn that you do so. They are the experts when it comes to female cancer and the one you really want to do the surgery. As I was told by the woman in the oncol office a regular ob/gyn might do 3-4 hyst a month where an oncol/gyn does 3-4 a week. Much more experience.

The fact that you were bleeding postmenopause is quite different than me. Even though I'm 56 I have not gone more than 4 months without bleeding, so I'm still considered perimenopause. I am definitely having my gyn stay on top of me for tests to make sure the hyerplasia does not return. Also the fact I have never had atypia is different. I know it is not an easy decision to make regarding the hyst. It is something that you have to feel comfortable with but another opinion might not be a bad idea.

Good luck and please keep us posted on your progress.

Mary
  #3  
Unread 10-15-2005, 12:10 PM
Dx with Complex endometrial hyperplasia with mild atypia

Hi Cranky Jo,

Here is a Web MD article that might help you out:

http://my.webmd.com/content/article/4/1680_51528.htm

Best wishes,

Mary
  #4  
Unread 10-15-2005, 12:37 PM
Dx with Complex endometrial hyperplasia with mild atypia

Hi Mary, Thanks for responding and sending the link. It had very good info in it. Your story is interesting in that you are my age and still peri. I am glad you are doing well now. I will get a 3rd opinion. I just have to be more sure before I can make and go through with such a drastic decision.
Take care, Cathy aka Cranky Jo
  #5  
Unread 10-15-2005, 12:53 PM
Dx with Complex endometrial hyperplasia with mild atypia

I just had a total abdominal hyster 5 days ago for atypical complex hyperplasia. I am 51 and not menopausal yet and was having regular but very heavy periods. I was very anemic so had a D&C and ablation. After I had the ablation the results of the D&C showed atypical complex hyperplasia on a polyp that was removed. I consulted an oncologist as well as my own gyn. Both suggested a hyster as 25% of these diagonosis can go to cancer. I was OK with the removal of uterus but not the ovaries. It was their recommendation that I have them removed just as a safety factor in case it could move to ovaries. After much research I made the decision to keep my ovaries if they looked oK at surgery. My gyn removed a cyst and left them. I don't know if that was the right decision and to tell you the truth I'm a little nervous about it but I didn't want thrown into immediate menopause and I didn't want to deal with hormones. My gyn's logic was you are nearly menopausal age anyways but I have a family history of heart disease and know that having your own hormones does give you some protection from heart problems ( taking hormones also works if you can find the right combo for you). I am 5 days post op and I can tell you that I am recovering well from the hyster. My fear and imagination preop was the worst part of this whole ordeal for me. Good luck with your decision and remember it's your body and you need to make the decision right for you.
  #6  
Unread 10-15-2005, 01:59 PM
Dx with Complex endometrial hyperplasia with mild atypia

Thank you also for responding. I am glad that you are doing well and somewhat happy with your decision to keep the ovaries. Sometimes we shouldn't worry about the what if's in life because they don't happen anyway. What I have researched says that keeping the ovaries protects against heart disease and hip fractures, diseases more common than ovarian cancer. I think you made the right decision and I want to keep mine also if I do go to surgery. I think seeing a gyn/onc will help with my decision. Take good care of yourself. I am wishing you a speedy recovery.
  #7  
Unread 10-15-2005, 06:51 PM
Dx with Complex endometrial hyperplasia with mild atypia

I wish that I would have had my hyst. years ago before this turned to endometrial cancer. I waited four years while it advanced to needing radiation. Plus, once they got the organs out to do path. on, it was found to be more than the in-office path. showed.
  #8  
Unread 10-15-2005, 08:18 PM
Dx with Complex endometrial hyperplasia with mild atypia

Wow, I am so sorry that you had to go through so much. Did you know for 4 years that there was a problem? I would like to know more if you want to tell me. This has just happened to me and I would like to think that megace might take care of it, and I would stay on top of it. But who knows how things will go or turn out. I hope that you are doing well now. Please let me know. Take care, Cathy
PS: I am hoping to move to Charlotte NC. Where do you live if you don't mind saying?
  #9  
Unread 10-16-2005, 12:13 PM
Dx with Complex endometrial hyperplasia with mild atypia



I agree that another opinion with a gynecologic oncologist is a really great idea. I can appreciate your desire to avoid surgery if possible. While I had an excellent outcome from my hysterectomy (and it appears that the majority of women have good outcomes), a hysterectomy is still major surgery and it should be avoided when possible.

Now, that being said, only a doctor can decide if Megace is truly an option for you or not. So, while women may come along and share their experiences with you, their situation may not be exactly the same as yours, so it's important to strongly take into consideration what your doctors are telling you. Hopefully the gyn/onc will feel that Megace is a legitimate option for you, but if not, then listen carefully and ask why it is not an option--so that you can take all of that into consideration when you are making your final decision. Sometimes we follow our doctor's advice. Sometimes we decide to go our own way. But get all of the information and apply it to your own situation and then make the choice that is best for you (which may or may not be what you want to pick, or which may or may not be what your doctor recommends).

My cancer involved my cervix, not my endometrium. After days of fretting and crying because I really didn't want the surgery and I had read so many horror stories on the web and figured that life as I knew it would be over, I agreed to the surgery because it was the best medical choice I could make while I was raising my young children. It was the right choice for me, and as I said, I had a good outcome. Another woman may have chosen differently in my situation and that would have been the right choice for her. You have to do what you are most comfortable with. Here are a couple of threads that have dealt with this topic:

http://www.hystersisters.com/vb2/sho...ghlight=Megace

http://www.hystersisters.com/vb2/sho...ghlight=Megace

Perhaps some of it will be helpful to you. I'll be keeping you in my thoughts and 'ers as you are deciding what to do. Make sure to go see that gyn/onc! They are the experts in this area and they have studied these issues extensively.

  #10  
Unread 10-16-2005, 01:24 PM
Dx with Complex endometrial hyperplasia with mild atypia

Hi Jeanine,

Thanks for your thoughts and the links. Any information is always helpful.

It is such a major decision and one that I am having a hard time making. I don't know much about megace but hope to and need to find out. I am going to make an appt with a gyn/onc tomorrow and maybe even 3rd ob/gyn. I HAVE to know that surgery is the best and only option for me before I can agree to it.

I hope that you are now doing well. Thank you for the prayers.

Take care, Cathy
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