I am new here and have recently been diagnosed with complex hyperplasia with atypia. I am very nervous. I have selected to try to treat this with horomones (provera) for the next 3 mos.
After that, another D&C will be done and see where that path report leaves me. If it is the same, I will have to have a Hysterectomy. I am 35.
Dr. was very concerned and suprised because he does not usually see this in someone my age.
My question is, has any one else had this diagnosis and been successful with horomone therapy? I do not relish the idea of surgery with a long recovery. I have a feeling that surgery will be necessary, even if it is down the road several years.
Your opinions are imortant to me. I know of no one else with this problem in my family or circle of friends.
While I am considerably older than you, my dx was the same. I really wanted to avoid surgery so I spoke with a specialist in hormone treatment and he told me that if I were younger he would recommend trying such treatments; such treatments seem to be considerably more effective in younger (under 45/50) women. He even was willing to try hormone treatments on me but cautioned that unless I underwent surgery, they would not know if cancer already was there and if I took treatments whether it could spread. I am so glad he recommended surgery as cancer, thankfully a low grade type, was indeed there; I was told by both my gyn and gyn/onc who assisted that the op apparently was the cure. They both advise I must have 3 month checkups for the next several years as a precautionary measure.
If you have any concerns that hormone treatments may not be the best measure for you, you may want to consider getting a 2nd or even 3rd opinion.
Good luck in whatever treatment you chose to overcome this apparently not that uncommon condition. peggiesue
Thank you Peggisue. It is good to know I am not alone. I must say, I was shocked to see that they found a low grade cancer during your surgery when the diagnosis had been complex hyperplasia with atypia. I must admit this scares me a bit.
Glad to know you are all better and on the road to recovery. We must keep those every 3 month appointments, no matter how un-fun they are.
Joyce, So sorry if my experience raised your concern. Somewhere on the Internet there are statistics on the probability of this dx indeed leading to or meaning cancer is there already and if I recall correctly it was something like 30 percent, so the odds really are in favor of not having the cancer.
BTW I forgot to mention that both oncs I consulted said postponing the op a month or two would have been fine. I went ahead and got it done quickly because I knew during any waiting period I would be looking for ways to get out of the surgery- a first for me.
Please remember that all my doctors told me that if one has cancer, endo is the one to have, given its high cure rate and the fact that often the surgery is the cure. Remember to try to have a positive attitude which will help both with the pending surgery and your recovery. Blessings and s peggiesue
I also was diagnosed with Simple and Complex hyperplasia without Atypia but I am older than you and also had large fibroids and it was suggested to go with the surgery but to everyone's surprise a small undetected cancer was present in the cervix found by the pathologist after surgery. In my case I also feel the surgery was a blessing in disguise as I was very unhappy before and have felt great since the surgery in all aspects. It is a real tough call my doctor said if I were younger he would have suggested hormone therapy to reverse the trend of hyperplasia, since I was postponing the surgery from Aug to November he put me on the hormones and I had severe migraines until I stopped them. Again this was just one persons experience.
Joyce, another sorry, this time for the confusion in my last post since I mentioned keeping up a postive attitude "post surgery." It is clear you and your doctors have decided to go the hormone route.
Both the oncs that I met with told me they most certainly would have recommended hormone treatments vice surgery if I had been younger. They emphasized that such treatments had a much better success rate in younger women, while success with older women was quite limited. Both also mentioned that even when endo cancer develops, especially in younger women, it usually grows slowly so that is another reason they can and do routinely recommend hormone treatments for younger patients.
Good luck with your treatments and do keep up a positive attitude. peggiesue
Peggysue. Thank you for your support and insight. I do not like being on the Provera. It makes me crazy. I thought it was just stress, but after 3 mos I realized it was the drug. Hard to live like that, but I guess it is better than the alternative.
He has now put me back on it since the D&C but at half the previous dose and for a continuous 90 days to see if that will even me out. I don't think I can take those terrible mood swings again. Hard to live like that. Here's hoping!
I will have to look more up on the internet about this condidtion and see if I can find out the same information about the 30% ratio you stated... Looks like I have more homework to do..
I am 47 and was diagnosed with well differentiated (early stage) endo cancer almost two years ago. I also chose the hormone route. I took 80 mg of Megace for 2 months and it reduced it to atypical hyperplasia then switched doctors because she was still pressuring me to have a hysterectomy. My new doctor gave me 160 mg for 4 more months and D&C showed no signs of cancer or hyperplasia. I would say it's worth a try. You can always do the hysterectomy later if it comes back again.
I, too, have been diagnosed with complex hyperplasia w/atypia. Doctor recommends hysterectomy (I'm 50), but am trying the progestin therapy for a few months.
From the literature on the web, it seems that complex hyperplasia w/atypia develops into endo cancer 25-30% of the time. When I mentioned this to my gyn/oncologis, he did not dispute, but gently added "develop or is already present." That scared me enough to prepare myself for a hysterectomy in the next few months.
Good news to hear that the endo cancer was "improved" with progestin therapy. I'm hoping that my next visit, after taking the megestrol for 2 months, will show no atypia.
Thank you for sharing your experience. I am so excieted to hear from someone that the hormone therapy has worked. This is the best I have felt all day! Wooo! There's hope!
I have learned so much from all you wonderful ladies over the last few days. I have heard of this Megace mentioned several times and may have to do more research on it.
If this can work, it is worth a try. The only thing I have been suprised about is the mention that this dx can mean "may develop" in to cancer or it "may already be present". My doc sure did not tell me that last part. This only drives me more to be healthy as I can and do my part to get this fixed with out surgery.
Thanks again, I just can't seem to say that enough! But its true