I woke up to a post of a fellow blogger this morning that has really got me stirred up. The post was about endometriosis awareness month, which apparently is this month. It's what I have since found out based on her post, that I am so incredibly thankful for. Before I get into that, a little background.
Many of you may know, I lost my mother over 4 years ago to ovarian cancer. She was 52 years old. She had a very rare form of ovarian cancer, clear cell carcinoma. This type of cancer accounts for less than 5% of all ovarian cancers. My mother did so much research, but even 5 years ago, the knowledge about clear cell carcinoma was very scarce. My mom seemed to be focusing most of her attention to the connection between DES exposure and clear cell. She was also tested for the BRCA gene but was negative. An important fact about clear cell carcinoma is that it is very hard to treat due to its drug (chemo) resistance.
One thing that was never discussed or brought up was endometriosis. I don't know that she was ever diagnosed. Surely, had she been, she would have put a connection between the two. I can't ask her now, but I wonder if it's possible that she had endometriosis and was never diagnosed. I was her only child and she had me at age 20. She had a hysterectomy in her late 30's but I don't remember the exact reason. Something about a collapsed bladder comes to mind, but since I was a teenager at the time, I can't say for sure. Because of her age, they did not remove her ovaries.
So in the past few hours since reading the post below, I have found out the following:
Women with Clear Cell Carcinoma - Less than 5% of all ovarian cancers. 70% of women with clear cell have endometriosis.
Women with Endometriosis - Are at an increased risk to have ovarian cancer. Have 3 times more likely hood to have clear cell carcinoma.
I was first diagnosed with endometriosis in 2008 during my first laporoscopy. This was long before we started TTC, and more of a preventative measure because we thought I might have endo and I didn't want to have issues TTC when we were ready. (that seems to have worked out well, eh?) At that time, my endo was mild and I went on the Mirena IUD to ward off any reoccurrence of the endo. One would have thought it would have worked since for the next two and a half years, I didn't have a period. Then I had the ectopic pregnancy while on the IUD, then we started TTC, which has lead us to today where I have had my second laporoscopy and diagnosed with stage III endo along with my diminished ovarian reserve (related?).
What does this mean to me right now? Well, it means I need to have a chat with my obgyn. We've done annual ultrasounds and CA-125 tests since my mothers diagnosis as a part of my annual exam. That I'm sure we'll continue to do. Other than that, there is nothing I'll do. Obviously having a child is first and foremost. However, in light of this information, I do know that I where I was considering having a complete hysterectomy after having children, I now know that I will absolutely have that procedure once our family is complete.
My mother was devastated for my closest friend during her fertility journey. She cried for her and wanted so much for her to have that child she dreamed of. After my mother died, that child finally arrived and I know my mother would be giddily jumping up and down with her infectious smile seeing how happy they are. What hurts is knowing how it would effect her to know what I'm going through now. More than anything I wish I had her to talk to about all of this. There is no one I'd rather have than her right now. She'd be the one researching the best treatments, the best doctors and the best protocols. She'd also be ALL over this endo/cancer connection. So the best gift I can give her is for me to make myself as knowledgable as possible in all areas of my health. After all...I was her baby.
Jessah's blog post
I am in tears as I read your post. I am so sorry for the loss of your mom, but proud you can now do better for yourself. *big hugs* and your mom, myself, and many others will be jumping your joy when you get that BFP. I know you wish your mom was here on Earth to help you now, but I know she is in heaven watching over you and being with you through all of this. *hugs*ReplyDelete
Wow, very interesting stuff with all of the correlations. There is one way to figure out if your mom had endo and how that may or may not relate if you really want to know. Just request her medical records. Most dr offices are required by law to keep all medical records at least 7 years and since your mom only passed 4 years ago, they would still have them. I just requested my mom's entire gynecological oncology file over the holidays and they sent it to me by mail free of charge. If you know who her OB/GYN or oncologist was, you can easily request them! I am so glad I did it for my mom, because I was looking for things that could correlate for me and my sisters and now I have the entire picture.ReplyDelete
I am so sorry your mom isn't here right now, but I can assure you that she's watching over you and is holding your head on the nights you cry, holding your hand at each RE apt., and she'll be right there holding your little one the moment you meet him/her in the very near future. :)
Thanks Suzanne for sharing your struggle with endo and your Mom's story. It's so important to talk about these things so they can hopefully help educate others. I had no idea about the potential connections between the two diseases. Your mom would surely hate to see you struggling to build your family but I hope that struggle doesn't last too much longer. Hugs!ReplyDelete
So sorry for the loss of your Mom and for the fact that you have to travel this infertility road without her. I think that becoming an expert on your own condition is an excellent idea. Good for you for being your own advocate. Glad to have found your blog. I'm looking forward to following you from here on out.ReplyDelete
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