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complex hyperplasia with atypia complex hyperplasia with atypia

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Unread 11-04-2010, 09:14 AM
complex hyperplasia with atypia

Here it is in a nutshell my diagnosis YESTERDAY. I have to decide what to do. I am scared to death. I have three beautiful kids so don't plan to have anymore. Had 2 C sections, I have a set of twins. Any thoughts or advice?

I got from it that the complex hyperplasia with atypia is the more serious type of hyperplasia and has about a 25% chance of turning into a cancerous situation. Recommended treatment is a hysterectomy. Only reason not to do hysterectomy is to save uterus for conception for woman of childbearing age.
If hysterectomy is not done, the hormone therapy is used with a follow up d and c to determine if hormone therapy has worked. Seems like it would be a continous series of endometrial biopsies and d and c to monitor just to
keep the uterus. hyperplasia with atypia is more likely to persist even after hormone treatment. Not to mention
constantly worrying about cancer forming if the situation persists.
So what should I do?
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Unread 11-04-2010, 11:29 AM
Re: complex hyperplasia with atypia

I had a hysterectomy for different reasons but I have no regrets about it. Recovery was relatively easy for me and now, several months later, I feel fine. You do have to take it easy for at least 6 weeks after surgery - no heavy lifting, no straining, frequent rest breaks.

I'm sure the other ladies will have more info for you. You're the only one who can decide what's right for you.
Unread 11-04-2010, 12:14 PM
Re: complex hyperplasia with atypia

Hi. Sorry you are faced with these types of decisions to make. Yes, the odds are in your favor that you will not develop cancer, however, 25% is still a high number when dealing with this beast. I know me saying this doesn't help, sorry! My initial biopsy revealed hyperplasia w/atypia, but then I had a D & C shortly afterwards, and cancer did show up. It las low grade, and in my case the decision was absolutely to have a hysterectomy to get rid of it.

At 49 I was pretty much past child bearing age so it is just easy for me to say that I don't miss my uterus, or cervix, or ovaries, or any of it, at all.

Best to you!
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Unread 11-04-2010, 12:24 PM
Re: complex hyperplasia with atypia

I had the same diagnosis after my biopsy. 40% (got this % from the doctor) of the time this diagnosis hides the cancer which was true in my case. This is one of those cancers that can be caught early. I am glad I had the surgery.
Unread 11-04-2010, 05:51 PM
Re: complex hyperplasia with atypia

Got the same diagnosis a couple of hours ago and have to meet with doctor soon to discuss options. Was leaning toward hysterectomy since I'm 53 and already don't have my ovaries. Thanks for your advice.
Unread 11-04-2010, 07:15 PM
Re: complex hyperplasia with atypia

I had hyperplasia without atypia, It turned to cancer anyway. Although I am much older than you are. I would opt for hysterectomy before cancer does rear its ugly head.
Unread 11-04-2010, 07:22 PM
Re: complex hyperplasia with atypia

JustMeJen -

Sorry that you have to deal with this decision. We can only tell you from our experiences.

It is good you are trying to get as informed as possible.

Mine was the reverse situation, I had a D&C that found a small cancerous tumor. After the hysterectomy luckily all they found was complex hyperplasia with atypia.

There are those here who have done the hormone or Megace route. If you aren't menopausal and they opt to take your ovaries you will go into surgical menopause. So depending on age some members haven't wanted to do it.

Part of it comes down with how much risk you feel comfortable with.

Do your research and then make the decision that you feel best fits your needs.

Unread 11-06-2010, 11:32 AM
Re: complex hyperplasia with atypia

I'm right there with you. Same diagnosis and having a hard time accepting a total hysterectomy. I'm post-menopausal and went to 3 doctors who all suggested the hysterectomy (da vinci). They tell you all these statistics about con-current cancer and one even said "you will die from this if you don't have it done". I have yet to find a surgeon who didn't talk about the surgery like he was taking a tooth out. They are just so 'matter of fact' and not exactly the kind of bed side manner I am used to from my woman GP.

My complex hyperplasia atypia was found because I had cramps and bloating and the ultrasound showed a lining of 6 mm. Over the past few months, all my symptoms have it's hard to accept major surgery when I'm feeling pretty good. I find myself in this strange state of mind thinking....well of course I don't want cancer, but if I have the surgery and there isn't any....was it all done for nothing? On the other hand, I am a worrier..and do I want to worry about cancer for the rest of my life?

My surgery is scheduled for Nov 15th and I am scared to death. I'm fairly certain that nothing will ever convince me that I'm making the right decision. I suspect right up until I am going into surgery I will have my doubts. I am a single mom to an 8 year old ....and thinking of not making it through the surgery puts me into meltdown a few times every day!

I know I haven't helped you make your decision...but I wanted to let you know that you are not alone. For some reason, the information about complex hyperplasia atypia is fairly vague's not black or white and there isn't a right answer it seems. We are left to our own research and our own risk-taking ability. It's scary stuff.
Unread 11-06-2010, 03:42 PM
Re: complex hyperplasia with atypia

Hi, My DX was complex hyperplasia with severe atypia yet the D&C I had did not show cancer but my gyn said things "did not look right." Despite the fact I was post-menopausal, I almost decided to wait and take the megace, etc. to see if things would reverse. The gyn/oncs (two) I saw reminded me that even if there was a reversal, it would mean constant checks,etc. I am glad I went ahead as during surgery cancer was found, thankfully it still was a very early stage and grade and the surgery was the full cure.
I wish you well as you come to this decision and as you gather further info it may become easier to make. Pls continue to talk with your doctors. One question I asked was what would the doctors tell a close relative IF their DX was similar to mine and both answered- have the surgery.
Pls keep us posted.
Unread 11-06-2010, 05:02 PM
Re: complex hyperplasia with atypia

Hi there,
I guess I'll chime in as an example of someone who chose the non-surgery route. I was dx'd at age 37, no children. I quickly reversed the hyperplasia w/atypia with progesterone (in 3 mos), and am now 39 and all my biopsies and D&C have been completely clear since the original diagnosis. I see a gyn/onc at a top cancer center, and get regular biopsies. I'm not sure that I'll ever have kids, but for me I still wanted the option, just in case. At this point my doc says I may never need surgery as long as the hyperplasia doesn't return, and he recently cut my progesterone dose down to five days per month (hopefully this goes ok). I'll continue to be vigilant about testing, and if it ever comes back, I will probably just opt for the surgery since I will be older. Good luck with whatever you choose, it's a big and scary decision, I know.

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