Complex Atypical Hyperplasia

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Topic Title: Complex Atypical Hyperplasia
Created On: 10/20/2006 04:45 PM

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 03/31/2012 05:29 AM

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aasta

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I was recently diagnosed with complex atpycal hyperplasia and the on/gyni gave me three choices of treatment. Nothing/Merina/hysterectomy. I told him I wanted a hysterectomy but I've ended up with the merina. Putting it in was so painful I thought i would be sick and they wouldn't allow me to move after because they thought I would pass out. Now 6 weeks later I am still in pain.

I am really not at all happy with the situation and would prefer to be totally free of the worry. I'm 56 and postmenopausal, never had children, never wanted any! He told me the hysterectomy was too risky for me because I'm over weight but looking at it from my angle I feel so depressed about it and the chances are that it's not going to work anyway. Surely surgery now would be better than waiting until A, I'm older, B, develop cancer.
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 06/01/2010 01:45 AM

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risastars

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I am 35 years old and was recently diagnosed with this same condition, atypical complex hyperplasia. i was also told that after 6 months of progesterone treatment if it did not respond I would need a hysterectomy as well. I was saddened because I have not yet had a child. After careful reading it looks like this type is not at ressponsive and they take a very conservative approach since it can lead to endometrial cancer. I see my gynological oncologist tommorow and I want to make sure I ask the right questions. I had also heard about the IUD tx in Norway and was wondering if this is available to try in US? If the treatment does not respond after 6 months, how long will they proceed with hormone therapy treatments before a hysterectomy is neccesary? My OB GYN mentioned that he does not want to take chances of this developing into cancer. Are there tests to tell how long I have had this? What do I need to ask and mention to the oncologist? Should I begin looking into freezing my eggs since it may only be 6 months for me to see whether i respond to the treatments? Wishing you all well. Thank you...Any recommendations are greatly appreciated!

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 02/22/2008 03:37 PM

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kittyb888

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Hi everyone, This is an update. I had a radical hysterectomy. The cancer was contained in my uterus. The five lymph nodes they took were all clear. My cancer was early and my survival rate is expected to be high. Only thing now is I have to endure 25 treatments of radiation to make sure it stays away. So I am very happy for my results. Thought you might want to know how I came out. Good luck to each of you. Sincerely, Joyce
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 02/06/2008 06:06 PM

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kittyb888

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Hi Melanie, I also have complex atypical hyperplasia. I am 57 years old. I ended up with a radical hysterectomy. My Gyn oncologist thought it was in the very early stages. But it wasn't quite as early as he thought. Next week I find out the results of my pathology report. It too was precancer which means it can turn into cancer at any time. They also took two lymph nodes to examine. This is pretty scarey stuff. Not to scare you, but I would most definitely go for the hysterectomy to save your life. Maybe you both could adopt a child. There are many children out there that need a home, Good luck. Joyce
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 10/27/2006 06:15 PM

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toby459

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Hi Melanie, I just wanted to let you know I spoke to the advanced gyn surgeon today specifically about your diagnosis and treatments. This is what he told me to tell you: Complex atypical hyperplasia does not turn into cancer fast. He said it could take years. He said if you are not sure yet about giving up your fertility, by all means try the hormone therapy. He said he's had alot of success with the hormone therapy. He said you do not NEED a hysterectomy at this time. Also, he said it was sad that no gyn doctors have helped you with the fertility issues, as there are many things that could be offered to you. He also said that a hysterectomy done for complex atypical hyperplasia could MOST DEFINITELY be done through the laparoscope, even if staging needs to be done. Usually if staging needs to be done, a general laparoscopic surgeon does that part, while the gyn surgeon does the lap hysterectomy part. He thinks that maybe Dr. Moradi, even though he may be an excellent diagnostician, may not have the advanced laparoscopic skills or feel comfortable enough to do the hysterectomy through the scope. He said if you are sticking with Dr. Moradi and if you feel comfortable with him, then by all means stay. However, he said if you really want to try a last ditch effort at having children, OR even if you would definitely want your procedure performed totally through the laparoscope, he wanted me to offer you the opportunity to have an appt. with him for a second (or third) opinion. I told him you had Healthnet in NY (is that correct?), and he said that he has dealt with that insurance company before without problems. Since he is very advanced, he sees patients from all over the country, so he deals with alot of different out of state companies. I'm just letting you know because you seem very anxious over this, and to let you know if you want another option in preserving your fertility and/or having some tests (some I mentioned before) done to see what the fertility problem is, and perhaps possibly have you be able to get pregnant, OR if you definitely know you want the hysterectomy and have it performed through the scope and not an abdominal incision, he would be more than willing to see you. He said he can most definitely offer you the procedure done entirely through the scope. Just offering another option so you don't feel like you're "trapped" right now, or making a decision you're unsure of....we are about 2hrs. away.......Kim
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 10/24/2006 08:01 PM

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toby459

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Hi Melanie, It does sound like Dr. Moradi is steering you in the right direction. Next to God's will, finding a good doctor is a huge key to success. Maybe he can guide you to a different regular gyn whom he feels would be a better choice. We have a few female gyn's in our hospital, and they are ALL incompetent. I don't know what it is, but I just haven't yet met a really good female gyn doctor. You would think since they are female, they would automatically know how they'd want to be treated. Who knows. Glad you found Dr. Moradi. I'm sure he relieved at least some of your anxiety knowing he is a good doctor and surgeon. It's important to feel comfortable with your doctor. Take care, & try to relax. Keep me posted on your next appt.....Kim
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 10/24/2006 11:09 AM

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Melanie228

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Hi Kim,Thank you for your prayers and concern. I believe above all, I'm in God's hands, and He'll make sure I come thru this A-Okay. Both my husband and I feel comfortable with Dr. Moradi. He took a lot of time to both examine me and then explain things in depth. We would definitely want him performing the hysterectomy (if needed), as opposed to my regular GYN. It seems she just wanted to pass me off to Dr. Moradi and didn't even tell me to follow-up with her. So that alone makes me want to have Dr. Moradi perform the surgery.I'll keep you posted and again thank you for your prayers.Melanie
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 10/23/2006 10:55 PM

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toby459

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Hi Melanie, thanks for keeping me posted. On my way driving home from work I was thinking about how you made out today ..it sounds as if your gyn oncologist is on the ball....it is good for him to start from the very beginning to make sure the path report was correct. You don't fit the "typical" profile for complex atypical hyperplasia, such as irregular bleeding, obesity, etc. Having very heavy periods can also be a sign. However, sometimes there are NO outward signs. The common symptoms are unusualbleeding, such as postmenopausal bleeding, bleeding after intercourse, heavy periods, or bleeding between periods. Some women just have pain or pressure in the pelvic region, or some just have a persistent vaginal discharge. Then again, some endometrial cancers may reach an advanced stage before signs and symptoms are recognizable. Everyone is different.I can understand him wanting to do the hysterectomy (if needed) via the abdominal approach if he is unsure of what is on the ovary, or if he might want to do staging. The ovary "thingy"could be just a recurrent endometrioma or ovarian cyst, as having a fertilized egg implant there is not the usual, but who knows. Your doctor might take out the uterus and immediately send it to pathology while awaiting for the result, (called intraoperative frozen section). If the pathologist says there is cancer in a certain area, the surgeon may go on to take samplings of other areas, (called staging), such as lymph nodes to check if they are "clean"...if the pathologist says the uterus has no cancer, no staging is done & the operation is over. My surgeon does perform laparoscopic hysterectomies with staging done through the scope also, however it depends on alot of things. Most of his hysterectomies with staging are performed "open", so this is probably what Dr. Moradi is thinking too. I have a few coworkers who had the open abdominal hysterectomy & they did very well...It sounds like you finally got a good doctor who you can trust. I'm sure everything will work out just fine...Keep me posted on next week's appt....if I can be of any help in the meantime, please let me know. I'll keep you in my prayers....Kim
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 10/23/2006 05:37 PM

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Melanie228

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Hi Kim,Just wanted to let you know my husband and I saw Dr. Moradi. He is having another pathologist give a 2nd opinion on my pathology report, just to make sure no mistakes were made in reading the report. He seems baffled that given my history and background, that I have atypical complex hyperplasia. He cited that since my periods have been regular and my weight is normal and something else that I just can't remember...he feels I don't fit the typical profile.He said if the report is indeed accurate, I should have the hysterctomy because I have a 40% chance of developing cancer. He also seemed annoyed with my past doctors, because they never seemed to give me a clear explanation of the cyst/endometrioma/other on my right ovary. I think he's leaning towards a regular hysterectomy as opposed to laparscopic because he also wants to look at the "thing" on my ovary and remove it and he feels it might be too difficult to do all this laparoscopically. He also said it could be a fertilized egg which implanted there. This was heartbreaking for me as that could have been the baby I never had. But like my husband said, it was God's way of saving us the heartbreak of having to go thru a miscarriage.So I'm on hold now for a week until he gets the new pathology report. We're meeting with him again next Monday and if the report matches the original, then I'll probably have the surgery November or early December. He said in the very remote and slight chance that it's progressed to cancer, I'd be fine with the hysterectomy and some radiation. But he doesn't believe it's progressed that far.I'm not that thrilled at the idea of having an "open" hysterectomy as it's more time in the hospital and a longer recovery period. What do you think about the open hysterectomy as opposed to doing it laparoscopically? Especially given the fact that there's the cyst thingy (for lack of knowing exactly what it is) on my right ovary.Thank you again for all your help and insights. You've been more help than you know!!Melanie
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 10/23/2006 10:46 AM

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toby459

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Hi Melanie, I don't think you let the ball drop, I think your gyn dr. let the ball drop a long time ago. There were many things that could have been done to check your fertility & to do something about increasing your chances. Insurance companies are terrible!!...We have many problems with them in Pa. as well...I do agree that whatever is supposed to happen is God's will. I would definitely recommend the cervix be removed as well. We have many patients that come to us from other doctors that didn't remove their cervix. If just a small bit of endometrial tissue remains near the cervix, the patients still have monthly cycles with some bleeding..and with the cervix still in place, you would still have to have yearly pap smears to check for cervical dysplasia's....I'm interested in hearing about your gyn oncology appt. today. Keep me posted. Good luck...My thoughts are with you and your husband......Kim
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 10/23/2006 08:26 AM

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Melanie228

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Hi Kim,We never heard of those procedures before and my gynocologist at the time never made any mention of them. At one point she did try to refer us to a fertility specialist, but the doctors she gave us weren't on our insurance plan. It could very well be my husband's sperm count is low as he had become very ill shortly after we were married. He was on high doses of prednisone for a long time and eventually had his spleen removed. And then in 2003 my doctor put me on Lupron for 4 months to treat an endometrioma or cyst on my right ovary. I don't think the Lupron really worked as the cyst maybe shrank marginally. It eventually ruptured, according to my doctor, but now it's back again. The gyn I go to now is a new doctor as my old doctor no longer accepts Healthnet. To make a long story short, maybe I let the ball drop when it came to trying to do something about our fertility because I guess I always felt that if I was meant to have a baby, I would get pregnant. We never had enough money to purse in-vitro and while other insurance companies help out somewhat, Healthnet doesn't. My husband still wants to get his sperm checked, but at this point, things seem bleak. I know that the older you get, the more complications, deformaties, health risks arise in fetuses. Thank you again for your help and support and advice. We have our appointment this afternoon and I just need to compose myself for what the doctor might say we need to do. We have a list of questions ready and now we'll just wait and see.By the way, do you think my cervix would need to be removed too in my case?Kim, thank you again for all your guidance.
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 10/22/2006 11:10 PM

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toby459

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Hi Melanie, has your gyn doctor come up with a reason for your infertility?....I'm just curious as to what has been done for you to increase your chances of fertility...have you ever had a hystersalpingogram to see if your tubes are open, or a laparoscopy with a tubal dye study to view your fallopian tubes directly? Is your husband's sperm count low?....I'm just curious, if you don't mind me asking. I'm just trying to think of things that haven't been done yet, as I feel so heartbroken for you.....Kim
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 10/22/2006 10:20 PM

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Melanie228

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Thank you again for your guidence. Well, tomarro I will see the specialist and I have a feeling he will echo what you are saying. We knew having a baby would be difficult and now I am probably closing the door on that forever. I wish there was another way. Melanie
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 10/22/2006 01:05 PM

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toby459

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Hi Melanie, I'm sorry I don't know anyone in the NYC area that would take your insurance. There is a brilliant gyn surgeon in NYC, Dr. Harry Reich (the best of the best!), however he has never accepted any insurances. I do not know Dr. Moradi, but it seems your gyn dr. says he is very good. It seems you do have a family history of various types of cancer, so if this were me, I would not be too conservative with treatment. If this were my diagnosis, I would have the hysterectomy performed laparoscopically. Yes, personally speaking, I would be more afraid of the hyperplasia developing into cancer than I would be of having a hysterectomy. Just my personal opinion. Yes, if you said you definitely did not want to have children now, I would suggest the hysterectomy: because of your diagnosis, your age, and to eliminate future problems with the uterus. And also because our laparoscopic hysterectomy patients do so well, this lessens my fear of the surgery. I can understand though how frightening the thought of surgery can be. I had a Thermachoice Balloon endometrial ablation done 2 yrs. ago by the surgeon I work with, and although I have assisted on this procedure hundreds of times, and know this is a short, easy procedure, I was still so nervous. It's normal to be anxious about it. See what Dr. Moradi says tomorrow. Write down all your questions so you don't forget anything. This is not a very fast progressing or very fast invasive disease process, so if you really want to try a round of hormone therapy, do not feel guilty or upset. There is more than just the hysterectomy option at this point. Keep me posted......Kim
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 10/21/2006 01:24 PM

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Melanie228

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Hi Kim,Thank you so much for your response and your guidance. I live in Queens, a borough of New York City and my health insurance company is Healthnet. Unfortunately, it's not accepted in PA. Do you know of anyone in the New YorkCity/Long Island area you can recommend? As to cancer in my family, no one has/had uterine or ovarian cancer. Cancer is very prevalent on my mom's side as she had kidney then bladder then bone cancer. She was already in her late 60's when she was first diagnosed. Two of her sisters had liver cancer and bone marrow cancer. Also a second cousin passed away from cancer, but by the time she discovered it, it was too late, so I don't even know where it started. My oldest brother had kidney cancer, but is now okay.Our appointment with the gyn oncologist is Monday afternoon. His name is Mark Moradi and my gyn said he's very good. Have you heard of him?As far as our fertility goes, we're both 43 and we're pretty much concluding that having a baby is not going to happen without medical intervention, which we can't afford. It just seems like it's not going to happen, so if a hysterectomy is the way to go, then that's what we need to do. As to my gyn, she said it wasn't her specialty and that's why she wants me to see Dr. Moradi. I don't know if there was something she wasn't telling me. She seemed to be leaning towards hysterectomy if my husband and I had given up on trying to conceive. But if we were still hoping for getting pregnant, I should do the hormone therapy. I just don't want to risk my life for this option.As regarding that one sentence you wrote, I'm a little puzzled. "Personally speaking, the risk of hysterectomy outweighs the fear of progression to uterine cancer". Do you mean to say that the risk of a hysterectomy outweighs the advance from complex hyperplasia to early stage uterine cancer? Is there so little difference between the two? I know hormorne therapy can have side effects as well.Based on the cases you've seen and handled, would you usually recommend hysterectomy or hormone therapy for someone like me? If I were to flat out say that I don't want to try to have children now, would you just opt for the hysterectomy? On the one hand I know that my condition may not necessarily progress to cancer, but on the other hand, I want to make sure I make the right decision.Lastly, I can't tell you how helpful and kind you've been with this information. I was surprised by the way my gyn didn't explain the situation or our options. Thank you again. This has been the most frightening time of my life.Melanie
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 10/21/2006 12:41 PM

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toby459

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Hi Melanie....you are correct that about 71% of women with complex atypical hyperplasia will not go on to develop uterine cancer. I have not read any studies that say women with complex atypical hyperplasia are at greater risk for breast cancer. Do you have any family history of uterine or ovarian cancers? Also, since you express deep concern over fertility, I would start on the conservative side & suggest you start with the progesterin treatment. Frankly, I'm surprised your regular GYN doctor doesn't seem to be well-versed in the treatment options & is referring you to a gyn oncologist. Usually gyn oncologists are reserved for the more invasive cancers that may require chemotherapy and/or radiation therapy. It doesn't appear that is your case, but perhaps your regular GYN doctor thought it would help you in your decision making process. In more severe cases or cases that do not respond to hormone treatment, this hyperplasia"overgrowth" may lead to cancer of the uterus. In these cases, hysterectomy would be the choice of treatment. Side effects of hysterectomy vary with each patient. Every person reacts differently, and reactions are a combination of emotional and physical responses. Some women report feeling down after a hysterectomy. Most feel better after a few days or weeks when healing is complete. However, there is actually VERY LITTLE evidence to suggest a direct connection between having a hysterectomy and developing depression. Other women experience a feeling of relief after a hysterectomy. Not being able to bear children can cause emotional problems for some women. This is why fertility issues should be discussed with your partner.Many women do not experience any change in sexual activity. Some women say that they enjoy sex more after a hysterectomy, particularly if they have had a lot of bleeding and pain beforehand. Some women feel more relaxed because they don't have to worry about getting pregnant.Following a hysterectomy, few women CAN experience a risk of vaginal vault prolapse in their much later years. This occurs when the top of the vagina drops down due to a reduction in support structures. If you have mild prolapse now, this also can be repaired at the time of hysterectomy. Personally speaking, the risk of hysterectomy outweighs the fear of progression to uterine cancer. The surgeon I work with only performs total laparoscopic hysterectomies (TLH), in which the ENTIRE procedure is performed through the scope, and our patients usually go home the same evening or the next morning, with VERY little discomfort. Another important aspect of the laparoscopic hysterectomy technique is the doctor can suture the vaginal vault and the uterosacral ligaments to prevent future prolapse if necessary. This is a bit different from the Laparoscopic Assisted Vaginal Hysterectomy (LAVH), in which only a portion is done through the scope. However, an LAVH is still preferred over abdominal hysterectomy in which there is more bleeding, more post op pain, more risk of complications, and longer recovery time. Also, you should be able to preserve your ovaries at your age. In summary, since you are really concerned about fertility issues, I would recommend you try the progesterin route first until either you decide about having children, or until you get the results of your next sampling post progesterin treatment. Also, may I ask what state you are in?....I am in Pa., and if you are close, I would give you the name of my brilliant surgeon. He is highly skilled, highly trained, and an advanced gyn trained laparoscopic surgeon. Also, here is a webpage that describes the Total Laparoscopic Hysterectomy. http://www.reproductivecenter.com/simplified.html You are more than welcome to ask questions. I hope I can be of some help in your decision making.....Kim
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 10/21/2006 09:44 AM

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Melanie228

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Dear Toby,Thank you so much for responding in detail. I am really struggling with this. But there is one note of confusion I have. If 15-29% go on to develop uterine cancer, that means that 71% of more will not. I am just confused why my original gyn and you feel that the hysterectomy route is the way to go. And my odds may be better because I am not post or menopausal. Also, I am wondering what the side effects of a hysterectomy will be. I hate to do this to you but I have one more question. Are women who develop complex atypical hyperplasia at greater risk for other forms of vaginal/breast cancer? Thank you so much.This is a really tough time for me and I have a million questions. I am just trying to figure out what's best for me as I watch a shrinking window of fertility close.
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 10/20/2006 11:00 PM

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toby459

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Hi Melanie.......Currently, the standard treatment recommendation for women with complex atypical hyperplasia of the endometrium involves removal of the uterus. Studies have demonstrated that about 15-29% of women with complex atypical hyperplasia found on endometrial biopsy may either have concurrent endometrial cancer in their uterus (not detected by the biopsy) or go on to develop endometrial cancer if left untreated. However, atypical hyperplasia in postmenopausal women appears to have a higher rate of progression to adenocarcinoma.I remember reading about a study performed in Norway about a year or 2 ago, using a progesterone IUD for the treatment of hyperplasia. The specific type of progesterone used was called levonorgestrel. (This IUD is marketed in the U.S. under the trade name "Mirena".) In this small study, only 7 women with complex atypical hyperplasia were treated, and after only three months of follow up, were shown to have normal endometrium at the time of a second endometrial biopsy or D&C. While these results sound promising, 3 months is a very short follow up, and 7 patients is a very small number. Given the lack of large studies demonstrating its effectiveness as a treatment for complex atypical hyperplasia, once women have completed childbearing, I would advise strong consideration to removal of the uterus. If you want to try the progesterin route, I would give it a one-time try to see how the endometrium responds. If the next sampling is better, I would probably continue with the progesterin. However, if the sampling remains the same or gets worse, I would definitely go for the hysterectomy. If you do consider hysterectomy, ask about having it done laparoscopically, thereby avoiding the larger abdominal incision. A hysterectomy done through the laparoscope has less bleeding, less post-op pain, shorter hospital stay, and less recuperation time. Hope this helped......Kim, RN, BSN, GYN team leader, surgical nurse.
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 10/20/2006 04:45 PM

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Melanie228

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I recently underwent surgery to have some polyps removed from my uterus. The pathology report showed that I have complex atypical hyperplasia, which translates to pre-cancerous cells. My GYN believes I caught it early enough but these cells could turn into uterine cancer within 6 months if left untreated. She mentioned either having a hysterectomy or undergoing 3-6 months of projestin/projesterone therapy. She believes my prognosis is excellent and she wants me to meet with a gyn oncologist since this isn't her specialty. I felt she was leaning towards hysterectomy, but hesitated because I don't have children. My husband and I are both 43 years old and let's face it, our window for having children now is closing rapidly.Has anyone gone thru this and can you offer any advice or suggestions? Any help would be greatly appreciated. Thanks!!
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