complex hyperplasia with atypia/treatment other than surgery?

Is there any other treatment if you have been diagnosed with complex hyperplasia with atypia than a hysterectomy? I am 55 years old and in great health, so I thought. I went for an annual physical and I was notified a few days later that my pap smear was abnormal so I would need to come in. I had a colcoscopy done and the doctor informed me that it was complex hyperplasia with atypia. She recommended a hysterectomy, but I don't think I want to give up my uterus yet! I went to a gynocologist oncologist and she said I could have a D&C and then have an interunterine device inserted that would release progesterone. After 4-6 months another biopsy would be done. I've read about other treatments such as Megace. I'm not really sure what to do right now. I've read about unupposed Estrogen and think that is what caused my condition. Any advice?

Hello Seeker,

I don't post or respond too often anymore but your question is one that I almost feel compelled to answer. I'm not sure if you can acces my older posts but there would be a lot of information on this particular subject. Also, put complex hyperplasia with atypia in the search line and you will also get plenty of information.

The short answer ( in my opinion)... it is usually always recommended to have a hysterectomy at your age. Usually megace is recommended for younger women who are trying to preserve fertility. It often does not work over the long haul. Complex hyperplasia with atypia is thought of as pre-cancer and will eventually turn into cancer. Also, women who have that diagnosis and have surgery will end up with a post surgical pathology report that shows a low stage and grade of cancer about 30 to 40% of the time. i.e they are bumped up to cancer at surgery. This has happened to quite a number of women on this site.

If you wait too long you take the chance of your complex hyperplasia turning into cancer and spreading. You then risk more intense treatment such as radiation and/or chemo. The possibility of having uterine cancer is not something you want to take chances with.

Please get as much knowledge as possible and don't hesitate to get a second opinion. Plus, do some research on this site and elsewhere. There is a lot to know and you want to make an informed decision.

Diane

I am 34 years old and I was told that my only option was a hysterectomy. I am regretting that decision now for many reasons but one I do not think I did enough research.

My gyn/onc told me this was my only option. He did give me Megace to get me through a couple of months but after my football season was over (I am an athletic trainer) I would have to have hysterectomy. I am quite upset over the decision that I decided to have it so soon.

Keep researching but I would say for your age like Baylee said a hysterectomy might be your best option.

I, too, had the same diagnosis as you had. I am 51 years old and exercise every day. I had none of the risk factors for cancer at all! I had the surgery and the doctor said I had stage 1 grade 1 endometrial cancer. I'm still recovering, but I'm back at the gym and I've gone on with my life. At first I was all regrets and then I read about the struggles of women with later stage cancers who were going through chemo, radiation and removal of all kinds of things like the bladder, vagina walls, etc.. I count my blessings that my cancer was found early and I got rid of it so quickly.

I know I am naive to think I am cancer free, expecially since I have to go back to the gyn every three months for check-ups. Still, I do feel that I dodged a bullet and I'm done with this terrible disease. The surgery gave me some piece of mind. I'm not advising you to have it, I'm just saying that for me, it was the right decision. I wish you all the best with whatever you decide.

I can't offer much more than what has been said here. I also had this diagnosis and my doctor said I MUST have a hysterectomy. He said I would certainly end up with cancer if I didn't and said I would have, "2 good years left." I am only 40 and that really scared me!

I had tried Progesterone in years past to no avail. I also hated the way the Progesterone made me feel; very moody and irritable.

You should always do lots of research and consider all of your options. This is just my experience.

As for the surgery and recovery, it has gone very smoothly and I don't regret it one bit!

Best wishes.

Iam another sister who was initially diagnosed with complex hyperplasia with atypia. I found, after my surgery, that I had early stage endometrial cancer (Stage 1, Grade 1). I am a bit older than you. I'm also a breast cancer survivor (mastectomy, with a year of chemo), so I was really grateful to be rid of the cancer, with no additional treatment required. You and your Dr. will be the only ones who can make a "right" decision for you. I am at total peace with my choice to have a TAH/BSO. Wishing you well!

Barb A.

I do understand how you are feeling -- been there. No words of wisdom just wanted to let you know that you are not alone. Good luck to you in whatever path you take. Peace

I am 41 and was also diagonosed with hyperplasia with atypia just 7 months after a pap smear. It is hard to believe that cancer can grow as fast as it does!!! At the urging of my gynecologist, I was sent to a oncologist. Both doctors believed that I should have a hysterectomy. I was told that I could have minor surgery now with a 90% chance of having to have a hysterectomy within 6 months to 1 year. For me it was not an easy choice but since the cancer had grown at such a fast rate I felt I had no choice but to have a hysterctomy. I did this out of love and concern for my family and also so i could be around for years to come. Take your time and good luck!

Hi, I think baylee summed up my own thoughts pretty well - it's an option I researched thoroughly since my CAH was caught at a pre-IVF workup. Horrible, especialy since it was intially read as endometrial cancer.

I carefully researched the non-hysterectomy options but the failure rate is very high (about 1/3 of women don't get regression) and worse yet is the small but frightening percentage of women who have disease progress while on the hormonal treatment (megace, with or without Mivera IUD at the same time). To take such a risk of moving from a pre-cancerous condition w a near-perfect cure rate to a disease that is beyond the very early limits of the endometrium didn't make sense to me - and I was trying to have a baby. If I'd been out of the baby-making window I would have dropped the inquiries even sooner. It was the 3-5% risk of progressive disease despite treatment that had me up at night (because my doctors were suggesting this approach). And as is stated in some of the posts above, any pre-hysterctomy biopsies or D&C are incomplete and 18% of women with a pre-hyst diagnosis of CAH are found to have endometrial cancer in the pathology from the hysterectomy.

For myself, we decided to focus on keeping me healthy & doing our best to have a baby (not pregnancy) so we did an IVF collection (all frozen) followed by hysterectomy (keeping ovaries, assuming the pathology stays as CAH and not cancer) and we'll use a gestatiional surrogate for our frozen embryos. It's not the plan I had, but I can LIVE with it.

I understand you wanting to explore the non-surgical options, because I do think they are pushed on us pretty fast & furious, but make sure you ask a LOT of questions about the alternatives. There are also major side effect issues to think about with Megace (and less so with the Mirena IUD, but the studies showing it's effectiveness are with Megace in addition). Megace is used to stimulate appetite in anorexics and is basically putting you into PMS-from-hell by having VERY high progesterone levels (to balance the estrogen).

Good luck w your decisions