Complex hyperplasia w/severe atypia starting megesterol

Hi all,

I am 35 years old, married with no children, but still wanting one or two. I was diagnosed earlier this year with complex hyperplasia w/severe atypia after I told my ob/gyn of the irregular bleeding I'd been having and she performed a biopsy (which, btw, hurt like h*ll!). Ob/gyn recommended hysterectomy, because she felt I was pretty well assured to have cancer in my uterus. But she referred me to gyn/oncol in Houston, because I do still want children and wanted to pursue all options. Gyn/oncol was much more positive about the possibility of my condition not necessarily = cancer, and about the fact that hyperplasia w/atypia can be reversed with megesterol.

I had a D & C in mid-March and the pathology report came back the same as my original diagnosis, so there was no confirmation of cancer. YAY!

I am starting megesterol in a couple of weeks after I finish my current batch of birth control. The gyn/oncol is starting me on 40 mg twice a day for 3 months, then I'm to go back in for another biopsy. ugh! If that comes back with the same results I have to go back to Houston to see the oncologist, and we'll discuss further options.

I'm just curious as to what other people's experiences with this drug have been. From what I've read it's an appetite stimulant, and I'm pretty nervous about that. I started a weight loss program (after a severe scolding from the gyn/oncol about my weight and how it causes the overproduction of estrogen which contributed to my condition), and I don't want it to be derailed because I'm ravenous 24/7.

I also read that it can cause you to stop having a period. How long after you stop taking megesterol do your periods start back?

I'm hoping for a clear diagnosis after 3 months, so we can start getting serious about having a baby. Not sure if that'll happen or not. If it doesn't come back clear can we start trying anyway?

Thanks for any and all advice,

Rachel

Hi Rachel,
As your DX is considered pre-cancer, I am glad you found a gyn/onc who will work with you to try to reverse the dysplasia so you can try to become pregnant. As best I understand, your doctor should check you often including a biopsy or even D&X to insure the medicine is working and reversing the hyperplasia.. Women under age 40 seem to show the best results for reversal.
There have been women on this forum who have used megace or megesterol in hopes of reversal and if they still are here I know they will come along to answer your specific queries.
I would also suggest you post your questions re megesterol to reverse complex hyperplasia w/atypia in our Options and Alternative forum, you can find it be clicking here https://www.hystersisters.com/vb2/for...daysprune=&f=4
I'm wishing you success with this treatment.
s

Hi gotexans,

I also had complex hyperplasia with atypia. I didn't take megace, but did take Provera (which is also progesterone), and now have a Mirena IUD. The hormone treatment did work to reverse the hyperplasia, and my most recent D&C was completely normal. My experience with Provera was a little rough...ravenous, as you said, and also quite sad/moody (I'm prone to moodiness anyway, this just heightened it by a lot). I also had other odd symptoms, like my hands seemed to fall asleep all the time.

I'm not trying to get pregnant, but my gyn/onc said if I were, they would probably need to stimulate ovulation, as most women with hyperplasia do not ovulate. Also, I don't believe that they will say you can try to get pregnant until the hyperplasia has been reversed, as that would be a huge risk for you (since there is a very high chance of atypia progressing to cancer).

Good luck!

Thanks for the replies, kab and peggiesue. I'm thrilled to hear your good news, kab, and I'm also pleased to hear that women under 40 respond well to megesterol. From what I'd read online people with severe atypia only reversed about 20% of the time, so i was pretty unsure about my results.

Kab, was your atypia severe?

Rachel

Hi Rachel,

I don't know if my atypia was severe, I was never told that it was, and there wasn't anything on my path reports about the severity. If you do a board search here, there are a couple of women who have successfully reversed early stage endo cancer with progesterone. That's not something I would really want to do myself, but it would seem to suggest it could work for severe atypia if it can work for cancer.

Also, I took a lower dose of progesterone than would be recommended for atypia because the hyperplasia was originally misdiagnosed as no atypia. So months later, when it was discovered to be atypical (when an expert pathologist reviewed my original slides), the hyperplasia had already reversed on the low-dose hormones. So, at least in my case, the progesterone was very effective, even at a low dose. My gyn/onc said I should have been on a much higher dose, so I was very lucky that it still worked! I'm not suggsting you take a lower dose, just trying to illustrate an example of how effective it can be in some cases.

I'll also mention that my gyn/onc talked me out of a hysterectomy just in case I may someday get the chance to have a child (I'm 38, but single). I was very nervous and just wanted everything out, but he felt very strongly that a child could still be an option for me someday. It sounds like they feel that is a possibility for you too.

Again, good luck to you! I'm seeing my wonderful gyn/onc tomorrow and I'm looking forward to it, which may sound odd. But I go through periods of feeling very anxious about everything, and he is just so reassurring and knowledgeable. I hope you have a doctor that can help you through this time in the same way. Feel free to let me know if you have any other questions.

My gyn/onc is great - despite the 4+ hour wait to get in to see her. Ob/gyn seemed dead set on hysterectomy. Not something I want to do at 35 regardless of wanting kids or not.

I'm glad the lower dose worked for you. I'm supposed to start 40 mg twice daily in about a week. I am so hoping for a good report after 3 months, but I'm dreading the biopsy. At least this time I'll know what to expect. Had no clue the first time around, and my ob/gyn didn't really tell me much more than it would feel like a bad cramp. I tried to go back to work after the biopsy - big mistake! Had horrible cramping and really heavy bleeding.

I'm still spotting off and on and having cramping too even after my D & C and being on birth control. Did you experience this? Did your Provera help with that?

Oh I know, the biopsy is the worst!! The first one I had, I also didn't know what to expect, and was I in for a shock!!! How could it be said it would be slight cramping??? So my second one, my dr gave me prescriptions for Ativan, Percocet, a cervical softener, and also gave me a lidocaine injection (also extremely painful), and I took 4 Advil, and none of it helped. I was in tears on the table, very embarrassing. For the third, I had talked them into twilight sedation, but then I ended up getting a D&C instead, which is much more enjoyable, since you don't feel a thing!

Unfortunately, nothing has helped with my spotting, I've pretty much been spotting since I started Provera, and even after switching to Mirena, so it's been about 10 months now. This is one big drawback to all of this, and something I have to talk to my doctor about.

My gyn/onc is nearby, and at a top cancer hospital, so I'm just using him as my regular gyn for the foreseeable future (happily he agreed to this). My regular gyn always kind of freaked me out b/c she couldn't stop talking about how unusual this was for someone like me and she couldn't understand it and my "reproductive system was failing me." My gyn/onc doesn't act like I'm such an oddity, I think they're just more used to seeing these conditions in women who are not typical. And they're more experienced in trying alternative therapies if they think it could be successful.

When I have to have my next biopsy done, I'm gonna load up on Aleve. That really seems to help with my cramps most of the time. I've almost thought about asking my gyn/onc if we could do a D & C instead of a biopsy too! I had zero pain with my D & C (and I was expecting a lot post-op), and I've already met my deductible on insurance for the year, so it shouldn't cost me very much...

I wish my gyn/onc was closer, but she's two hours away, which means I have to pretty much miss a whole day's work to go see her. Not ideal earlier this year since I work in a cpa firm, and we're crazy busy the first 3.5 months of the year, but my bosses have been very understanding and supportive.

I'm sorry you're still spotting. I can't imagine how frustrating that must be - especially after your D & C came back normal. What does your onc think is causing it?

My onc thinks that the spotting is just due to the IUD and that I'm particularly sensitive to the hormones. I saw him yesterday and he doesn't think I need another biopsy until July. This is the first time I'll be having one with him, so I asked if there was any particular medication I should take (hoping he'd maybe have a good solution for the pain) and he said, "yes, you should take two Advil, that will help a lot." Haha, right!! It will be four Advil, at least!

I don't think another D&C would be a bad idea for you, especially since more of the tissue is sampled. I have seen stories on here where women had different findings on a D&C than on their previous biopsy, and I think that's because of the limited sampling area with the biopsy.

Hi Rachel,

I was in your shoes about a year ago, and my doctors proposed the Megace/Mirena IUD combo. Eventually I turned it down and had the hysterectomy but had several months of back and forth with second and third opinions.

The research I did was not terribly reassuring about the success rates for reversal of the complex atypical hyperplasia and moreover the low pregnancy success rates afterwards. You sound like you have pretty realisitic expectations - from my research it seemed like about 1/3 of women got successful reversal after 6 months (at 3 months so many don't pass that my gyn-onc now treats all for 6 months before biopsy). You might want to ask you gyn-onc about adding the Mirena IUD - it's a drug-coated device that puts more progesterone in the uterus where it's needed so they can use lower doses of Megace. I too was worried about the effects on weight, but it wasn't a deciding factor for me.

My doctors were pretty insistent that if I did get remission from the drug treatment, I'd need to immediately go into IVF to get pregnant - they don't want you waiting several months to see if it happens naturally. You might want to discuss with a fertility doctor while this is going on so you have a plan in mind.

For me, it was infertility that got me diagnosed in the first place (pre-IVF workup) and I was 40 so after discussion w the fertility docs I realized that taking my chances and waiting for a somewhat low chance of success just didn't make sense - by the time it was done I'd be another year older, the egg quality issues get worse and worse from age 38 onward. So we did a freeze-all IVF just before my hysterectomy, and another one a few weeks ago (I kept my ovaries at the hysterectomy). We are using a gestational carrier (surrogate).

These are complex and emotional issues -- the fear of cancer/pre-cancer at the same time as the blows to your fertility. I know it's hard -- hang in there.

If you want to discuss further, please feel free to PM me.