Complex Hyperplasia with Atypia/**New Diagnosis Post Op - Endometrial Adenocarcinoma Stage 1-A

Welcome.  I'm glad you found this site because we do understand how you are feeling.  It is scary.  And we can help.  I read about complex hyperplasia with atypia.  It said about 30% of cases have a concurrent carcinoma.   That means 70% don't.   It's hard to see that with the emotions your are feeling.  So your chances are higher that you don't.  And it sounds like it is a precursor to endometrioid cancer, which is the better carcinoma type.  About 80% of endometrioid cancer is found at 1A stage.  And 1A endometrioid cancer does not usually have any treatment.  

I am so happy to see you have been sent to a gyneoncologist who is aggressively treating your condition.   Try and take a breath and wait for your hysterectomy results.  Your chances are good. And I know its so hard to do.  Feel free to express your emotions here.  I found it very hard to talk to friends and family.  They mean well but do not understand, unless they have had experience with this.   Many other women will respond.   And please keep us up to date on your treatment and outcome.   You can read my story by clicking on my name and read the blog.  

Heather, first, try to take a breath.  You found a good place and you are working with a gynecologic oncologist - exactly what you want.  First - beware or Dr. Google.  Stats online are OLD and I can say what I saw when I first started coming here to what is being done today are completely different - which is good.

Try not to get too far ahead of yourself here, take it a step at a time and figure out what you are dealing with.  We are here to help you through it with answers to all your questions.

LisaPizza said:

A question to check with your

A question to check with your gyn onc is whether he/she actually recommends a radical hysterectomy, or whether that is maybe a misunderstanding. The terms can be confusing to the uninitiated. A total hysterectomy means the cervix is included. A radical hysterectomy removes the uterus/cervix, but also the parametrial tissue (tissues around the uterus), and has more complications or harder recovery ... for example, many go home woth a temporary bladder catheter. Fortunately, normally for endometrial cancer we get a total hysterectomy, whereas the radical hysterectomy is used for cervical cancer. I guess it comes down to differences in the way they grow and spread.

 

Removal of the ovaries is not actually part of a hysterectomy; it's named as a separate procedure that may or may not be done - oophorectomy. These days that's generally a salpingo-oophorectomy (salpingl means removing the tubes and not just the ovaries), because it looks like ovarian cancer actually starts there. So you have to ask to be sure exactly what is beong removed or not, and to what extent. Removing the ovaries is another area with debate, and there is evidence for not always removing them.

 

Same with lymph nodes. There's not a consensus on removing lymph nodes. They often will not sample any (assuming they look normal) if the introperative pathology doesn't show any cancer. If it does, they weigh things like grade and depth of invasion to determine how aggressive to be. Some docs take only a few (I only had 5), some take dozens. It's  balance between finding any spread, and causing possible lymphedema, so there's not one right answer. The trend now is toward sentinel lymph node biopsies.

 

But again, you won't know what's planned if you don't even know what to ask. And it may all be mute because chances are you don't have cancer ... but when they find out, you're under anesthesia and it's too late to take part in the decision-making or at least be prepared for the possibilities. You'll see all these types of surgery on your consent form. as "possible", just in case, but that shouldn't be the first time you hear about it, and you shouldn't have to decide without time to understand.

 

Some docs explain all this without prompting, and some just make their judgment call and only answer the questions you ask.

With regard to the lymph nodes, individuals vary widely in how many lymph nodes they actually have in different parts of the body.  One person might have many more than another, so they might have more removed simply because there are more there to look suspicious or not.

LisaPizza said:

A question to check with your

A question to check with your gyn onc is whether he/she actually recommends a radical hysterectomy, or whether that is maybe a misunderstanding. The terms can be confusing to the uninitiated. A total hysterectomy means the cervix is included. A radical hysterectomy removes the uterus/cervix, but also the parametrial tissue (tissues around the uterus), and has more complications or harder recovery ... for example, many go home woth a temporary bladder catheter. Fortunately, normally for endometrial cancer we get a total hysterectomy, whereas the radical hysterectomy is used for cervical cancer. I guess it comes down to differences in the way they grow and spread.

 

Removal of the ovaries is not actually part of a hysterectomy; it's named as a separate procedure that may or may not be done - oophorectomy. These days that's generally a salpingo-oophorectomy (salpingl means removing the tubes and not just the ovaries), because it looks like ovarian cancer actually starts there. So you have to ask to be sure exactly what is beong removed or not, and to what extent. Removing the ovaries is another area with debate, and there is evidence for not always removing them.

 

Same with lymph nodes. There's not a consensus on removing lymph nodes. They often will not sample any (assuming they look normal) if the introperative pathology doesn't show any cancer. If it does, they weigh things like grade and depth of invasion to determine how aggressive to be. Some docs take only a few (I only had 5), some take dozens. It's  balance between finding any spread, and causing possible lymphedema, so there's not one right answer. The trend now is toward sentinel lymph node biopsies.

 

But again, you won't know what's planned if you don't even know what to ask. And it may all be mute because chances are you don't have cancer ... but when they find out, you're under anesthesia and it's too late to take part in the decision-making or at least be prepared for the possibilities. You'll see all these types of surgery on your consent form. as "possible", just in case, but that shouldn't be the first time you hear about it, and you shouldn't have to decide without time to understand.

 

Some docs explain all this without prompting, and some just make their judgment call and only answer the questions you ask.

I was wondering, too, why a "radical hysterectomy" has been advised when there wasn't even a D&C performed yet? 

MoeKay said:

Total vs. Radical Hysterectomy

I had a radical hysterectomy for my endometrial cancer, but my gyn-onc didn't make the decision on which surgical procedure I would be having until I was on the operating table and he was able to assess my situation.  My tumor arose in the lower uterine segment, close to the cervix, so my surgeon stated in his operative report:  "the nature of the tumor was such that it was decided to go ahead and perform this wide excision (Type II radical hysterectomy)."  When I signed my consent forms for surgery, both procedures were listed in the document, to allow for the most medically appropriate decision to be made at the time of surgery.  Of course, my surgery was 20 years ago, so perhaps things might be different today. 

It sounds like Heatherlynn has not yet had her consult with the gyn-onc, so I suspect he or she will talk to her about the various surgical options at her upcoming appointment.

Heatherlynn, best of luck to you!

MoeKay, my surgery was seven years ago and I signed for the option for the open incision.  My gyn onc said, yes, the plan is the DaVinci, but if he got in there and saw something, he wanted to option for full abdominal surgery.  I knew that and I told my friend the first thing I wanted to know when I woke up was what TYPE I ended up having.  

Miss Heather, is anyone going with you to the consult?  Someone good at notes so you can sit and pay attention and they can just be your scribe?  A second set of ears might be helpful with everything that will be discussed, and your questions you want to ask.