Well, it’s not cancer… It’s Complex Atypical Endometrial Hyperplasia

I’d be lying if I said I didn’t cry at least once a day for the first week after my doctor’s appointment on Monday, September 10th. I’d be lying if I said the results of the pathology on my polyp didn’t freak me out. I would also be lying if I said that this is hopeless… It’s not.

The report on the polypectomy that I had done about a month ago now showed that I have complex atypical endometrial hyperplasia in my uterus. These are abnormal malignant cells that are not technically cancer, at least not yet. Atypical hyperplasia can be caused by estrogen levels that are not kept in check by progesterone. I have been tracking my basal body temperature for years now and my core temperature for about 8 months. I never have the tell tale bi-phasic pattern of higher temperatures associated with progesterone production after ovulation. My cycles (while somewhat predictable) have been annovulatory. This is one of the problems with PCOS; it creates a surplus of estrogen and not enough progesterone and creates the perfect breeding ground for atypical cells. Cells that, when left to do what they will do, can turn into cancer.

I don’t have cancer yet. I don’t have cancer right now. I don’t have cancer, and I’m getting treatment so that I don’t get cancer. I am on a progesterone therapy for the next six months. The hope is that the progesterone will cause the cells to revert to a normal state. This is not a cure, the only sure fire cure is a hysterectomy. But the progesterone could cause the cells to revert and give me a healthy uterus and a final shot at a living child. Ideally, I would have been given an IUD (intrauterine device) to provide continuous progesterone right on the battleground, but Doctor M2 didn’t want to risk upsetting my TAC if we don’t have to.

This is hard for me. I look at the stats on the treatment options for atypical endometrial hyperplasia, and I don’t feel like they’re good enough. I have the worst kind, the hardest to knock back. This hormone treatment stands about an 80% chance of working, and even then there seems to be only a 70-80% chance of the cells not coming back or developing into Cancer within 6 years. I know 80% might seem like good odds, but there was a greater than 99% chance that my polyp and tissue samples would have been benign. I had a 95% chance of carrying my pregnancies to term after making it out of the first trimester. I had an 80% chance of my cerclage with Anika holding… When you’ve been on the bad side of good odds this frequently, it’s hard to find hope.

The irony of this is that we only found out about these pre-cancerous cells because of my unending desire to be a mother to a child here on earth. We were doing the pre-screening tests to begin fertility treatments for the third and final time. If we hadn’t been pursuing pregnancy again, we likely wouldn’t have found the abnormal cells until they had become cancerous. Once that genie is out of the bottle it doesn’t really go back in. But we could get rid of my uterus before cancer has a chance to develop and then there’s no way for it to show up! But it would also take away any and all chances of us having a living child.

We were going to give this try until January, but now I won’t even be in a position to think about trying again until March at the earliest and then who knows…

As hard as it is for me to find, there is still hope. As long as the cells remain only pre-cancerous there is the opportunity to diffuse the bomb without needing chemo and radiation and bloodletting and witch doctors. I have an amazing support system around me. I have a good life.

I don’t think this is happening for a reason. I don’t think that this is part of God’s plan. I don’t think that a God who loves and cares for people would put them through all of this. I think he got the world spinning, set the rules in place, added in exceptions, and lets things play out as they may. Sometimes we get the miracles and feel his love and sometimes we get the tragedies and feel far from him. He celebrates and grieves with us, but he doesn’t actively make it happen. This gives me comfort.

I am thankful that I don’t have cancer. I am thankful that we are taking steps to keep me healthy. I don’t know what the next year will bring. I can’t even begin to imagine. But I will face it with my eyes open, and with Malcolm and our families and friends supporting me. It will be okay. I will be okay. We will be okay.

2 thoughts on “Well, it’s not cancer… It’s Complex Atypical Endometrial Hyperplasia

  1. Of, Annie! Big hugs! I read your useful blog periodically (because I will have a TAC) and I was really surprised reading this. God bless you!

    • Thank you. I will these posts to help other women going through similar things and I am so happy that you have found my TAC posts helpful.
      I am still hopeful that sometime soon I will be able to share my story of a TAC pregnancy and delivery. Only time will tell…

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