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Complex Hyperplasia w/o atypia but doc said pre-cancerous Complex Hyperplasia w/o atypia but doc said pre-cancerous

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  #1  
Unread 08-06-2009, 02:48 PM
Complex Hyperplasia w/o atypia but doc said pre-cancerous

Hi, I'm new here

I went in last week to see a new gyn. He was great, very informative and spent quite a lot of time with me explaining things. Due to uterine bleeding, extremely painful periods, going thru a tampon every 20 minutes and history of just about every woman in my family having a hysterectomy it was decided that it was time for me as well.

I had a biopsy done in the office, nearly passed out for some reason and was told it would probably come back normal. I received a call the next evening with my doc telling me that they found moderately abnormal cells and the word pre-cancerous kept being used. I think many of you know what it feels like to hear the pre-cancerous word. I started doing research - found this website and saw that there were different stages of Hyperplasia.

I spoke with him yesterday and he's now saying that its without atypia which is not pre-cancerous...or is it and does this depend on the doctor?

Here's the question and I've seen it posted before what's the difference between with and without atypia. Have any of you gone into surgery with a diagnosis of Complex Hyperplasia w/o atypia and at post op were found to have atypia or even cancer?

With this diagnosis and uterine bleeding since 1999 should I still consider seeing a gyn/onc prior to surgery?

To add to my stress, I have a few aneurysms. I've communiated with a few woman who have had hysterectomy with brain aneurysm and feel a wee bit better that everything can/will be just fine in that department.

Thank you for reading and sharing your experience.

Starstuff
  #2  
Unread 08-07-2009, 06:53 AM
Re: Complex Hyperplasia w/o atypia but doc said pre-cancerous

Hi, My understanding is that complex hyperplasia with atypia is considered pre-cancerous as atypical cells have already changed in appearance and may be growing to cancer. OTOH complex hyperplasia (with no atypia) means there is an excessive growth of cells but they remain normal in appearance. Hormones may be used to possibly reverse this type of hyperplasia.
I would suggest you consider consulting with a gyn/onc to get better peace of mind re your DX and the best treatment. Good luck and pls let us know how things go.
s
  #3  
Unread 08-07-2009, 09:00 PM
Re: Complex Hyperplasia w/o atypia but doc said pre-cancerous

Hi. I wanted to respond to your post because my diagnosis was similar. My endo. biopsy came back as Hyperplasia without Atypia. My gyn wanted to do a hysterectomy fairly quickly, as she felt too that this is pre-cancerous. My symtoms were heavy periods and prolonged bleeding. I am 50 and showing no signs of menopause yet.

I went to a gyn/onc for a 2nd opinion. He said that hyperplasia without atypia raises the risk of endometrial cancer to about 5%, with it being 3% for any woman. He recommended taking norethindrone for six months and then being retested, so that's what I'm doing. It has helped immensely with the heavy periods and the bleeding between periods - I feel normal again.

Based on what I heard and read, there is a vast difference between hyperplasia with and without atypia. In the with atypia diagnosis, the cancer risk is more like 35-40%. I would probably consider the hysterectomy with that diagnosis.

I don't know if I'm following the right path or not, but it feels better to me than going into surgery with this diagnosis. I had a post a couple months ago, and some members with this diagnosis had surgery and found they had atypia after all. The endo. biopsy only samples certain areas, so I suppose you could have problems in areas that aren't sampled.

I'll post again after I'm done with the six months of hormone therapy to let you know how this turns out. I think that if I would start menopause some of my problems would sort themselves out, but maybe that's wishful thinking. Good luck to you as you make these tough decisions.
  #4  
Unread 08-08-2009, 06:59 AM
Re: Complex Hyperplasia w/o atypia but doc said pre-cancerous

my first biopsy was complex w/o atypia but second biopsy came back as grade 1 cancer. They are only sampling a small area when doing a biopsy. The dr that did my second biopsy said that if it still came back without atypia then he would do a D&c to be sure that there was no atypia or cancer cells that the biopsy was missing. I did not have any of the risk factors for complex hyperplasia which is why he did not feel comfortable with the complex w/o atypia diagonis.
  #5  
Unread 08-08-2009, 02:16 PM
Re: Complex Hyperplasia w/o atypia but doc said pre-cancerous

I had a full hysterectomy, everything removed. a simple hyperplasa. the doctor took tissue samples from surgery and i will find out on aug.11 how they came out. my surgery reason was pre-cursor. so i have yet to know the results. hope all comes out well. so glad for this site too!
  #6  
Unread 08-08-2009, 04:31 PM
Re: Complex Hyperplasia w/o atypia but doc said pre-cancerous

Thank you for your responses. They are appreciated. It continues to amaze me how sharing ones experience can be the thing in my day that lifts my mood.

I also believe a second opinion with a gyn/onc is in order as with the original report they are biopsying a small area. My biggest concern is that I go in for surgery and they find cancer thus me having to have a second surgery which I would like to avoid if I can. Peace of mind with the choices I make is exactly what I am seeking...you nailed that peggiesue.

Sunshine - definitely let us know how things work out for you with the norethindrone. Its always good when a less invasive option can be taken prior to surgery. I don't know enough about the medication option to speak to it but only to say, I have tried b/c before and had the severe side effects of labored breathing, nearly passing out and it only got worse. Reason why I won't be going that route this time is because of that and due to the brain anuerysms....unfortunately, too high a risk with the side effects and my other health concerns.

I'm 40, and have always had irregular periods since the beginning. I went many many months as a young adult with out periods. I'm not really sure why I'm stressing over this decision, the decision for a second opinion. I think I'm concerned my pcp isn't going to give the referral to the gyn/onc or make it difficult to do so.

Ktjas - thank you for sharing your experience. I'm sorry to hear that it came back as cancer. I keep reading that it is one of the slowest growing cancers and hope you are doing well with your treatment. Did you have your second biopsy done by a gyn/onc?

Kay54 - This site is a life saver isn't it. Please let us know the results of your biopsy. I hope all comes out well for you too!

All the best to you all.
  #7  
Unread 08-25-2009, 07:55 AM
Re: Complex Hyperplasia w/o atypia but doc said pre-cancerous

Hi Starstuff,

I agree w the PPs that getting a gyn-onc opinion is probably a good idea.

The diagnosis line between endometrial cancer and complex atypical hyperplasia is actually a judgement one in the eyes of the pathologist. I've had the same slides from 2 biopsies (one biopsy, one D&C) read as both in-situ endometrial cancer and as complex atypical hyperplasia. (The lesser diagnosis by the most expert pathologists).

The chance of actually having endometrial cancer when the pathology says "complex atypcial hyperplasia" is 17%, which is nothing alarming, but nothing to ignore either - definitely worth a gyn-onc consult in my opinion.
  #8  
Unread 08-27-2009, 12:44 PM
Re: Complex Hyperplasia w/o atypia but doc said pre-cancerous

Hi round - recently I got a clearer diagnosis from my doctor. Focal complex hyperplasia without atypia. My confusion was that my gyn used the term "pre-cancerous" when giving me the news, so after much research and a request that he consult with a gyn/onc it was determined that what I have is not pre-cancerous. Now, because of this diagnosis, I cannot get a referral to a gyn/onc. Its not deemed medically necessary. I have to tell you, its been hard to get it out of my head since it was told to me, but the report is the report and I need to go by that.
  #9  
Unread 09-06-2009, 04:13 PM
Re: Complex Hyperplasia w/o atypia but doc said pre-cancerous

I have a diagnosis of complex hyperplasia without atypia and my doc put me on Provera (which I hate!). I have my second biopsy in two weeks and at that point will get an IUD so I can stop the Provera.

From what I've been told, a hysterectomy is only recommended with atypia, or if hyperplasia without atypia does not resolve with hormone treatment. So Starstuff, it seems like your doctor is following protocol. I've also found a lot of the web confirming this. I actually have switched doctors, and my first doctor called it "pre-cancer," but that seems to be a not very accurate description.

ktjas -- your story makes me a little nervous. I also have no risk factors for hyperplasia; in fact, my doctor was in shock when she walked into the examining room and saw me. She also had me get an ultrasound to rule out the slim possibility that an estrogen-producing ovarian tumor could have been causing this. I guess I'll just have to wait and see what the next biopsy shows.
  #10  
Unread 09-07-2009, 02:35 PM
Re: Complex Hyperplasia w/o atypia but doc said pre-cancerous

Hi ...

I'm new here too.. just thought I would chime in with my story.. 54 (almost 55) and I have a bicornate uterus. (meaning I have two half uteri) .

I presented with post meno bleeding in May and an US in June showed my endometrial linning is 13mm.. so yeah..everyone is a bit nerverous right now. My TAH is scheduled for the 22nd.. I've seen the gyn/onc. and they all agree it has to all come out.

they tried to do a biopsy..but apparently little swimmers can go up.. fluids can come down.. but nothing else up and nothing else down.. so it was a darn good thing my DD was premature and breech.. cause that was an automatic c-section.. and with DS we followed suit.

anyway don't know if it is pre cancerous.. cancerous.. or what.. and won't know until after the surgery.

and I got to say.. it is working on my nerves.

but I am taking it one day at a time as best I can.. trying not to loose sleep over it.. and not dwelling on it too much.

thanks to all for sharing.
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