Sep 17, 2012 - 2:10 pm
I joined here last year but only posted once. I am looking for support. I am 28, married, and live in NJ. I have no children....sadly
Last September I was diagnosed with endometrial cancer. It was thought to be low grade 1-2 endometriod type. There was no spread as confirmed by contrast MRI. I had a D&C in early Nov, and had a Mirena IUD inserted just after beginning 200mg of Prometrium daily. The plan was to spare my fertility and have the lesion reverse from the Prometrium. This would give me a window to get pregnant, and once done I would have a hysterectomy.
Everything has gone the opposite of what was I told would happen. My biopsy in March was odd, appearing to be a higher grade 2, there was concern it was a more invasive UPSC or clear cell. After 3 long weeks and an MRI I was told that another lab read my pathology and it was not a higher grade cancer. However despite the D&C and 5 months of hormones the lesion had returned, but there was still no spread outside the endometrium. A few weeks later I hemorrhaged, had to go to the ER. My IUD dislodged. I was switched to 80mg of Megace twice a day. My doctor was giving hormones another shot...my last shot before s hysterectomy was in order. Fast forward to June snd I am hemorrhaging again. I lost so much blood I was out of breath. I needed an emergency D&C to stop the bleeding. The D&C worked but the results came back that I maybe had a clear cell component of cancer. It was a maybe....Not good.
I had a da vinci Hysterectomy on Aug 13. My ovaries were spared because the plan was to do in vitro and freeze after surgery. I was staged at 3C, mixed clear cell and endometrioid cancer with 1 positive node of 27. The node is a paraaortic node. There was nothing found in my pelvis. This has changed my life. I am doing 6 cycles of taxol and carboplatin, followed by 4 weeks of paraaortic radiation. They do not plan to radiate my pelvis which is good. I just finished cycle 1 and am doing ok. The doctors told me that MAYBE i can do in vitro after treatment when my ovaries wake up again. They said i am young so it should be ok.. My surgeon wants to take my ovaries out after treatment...and of course after in vitro if i am alowed to have it.
I cut 10 inches of my hair off in preparation of losing it soon. Sadly i love my short hair and am still upset i will have to lose it. Is there anyone out there that has gone through the ringer like this? How do you make it through....?