← Return to Clear Cell Endometrial Carcinoma: Rare, aggressive, hard to treat

Discussion
Comment receiving replies
@kennedy429

Hello - In November 2021 I was diagnosed with Ovarian cancer. I had a complete hysterectomy with tumor staging and a very large cyst was removed from my ovary. The cyst contained two types of cancer - Endometriod and Clear Cell. Both were very small and considered Stage 1A. I was told that the treatment for endometriod was the surgery; but treatment for Clear Cell was much less clear. My Gyn Surgeon told me that clear cell is controversial because there's so little research. The recommendation of the tumor board who discussed my case was observation, but I was told I could have chemo if I wanted to - not a clear cut answer. After a lot of my own research, three opinions (all differing), agonizing over the decision and praying, I chose to forgo chemo. My observation visits, which consisted of blood tests only, all went well and I felt great, however in June 2022, I started to experience back pain which continued to get worse. Eventually I had an MRI and learned that my cancer had metastasized to my back and a few other areas in my body. I am now Stage IV. Interestingly the biopsy showed that the endometriod had spread, not the clear cell that everyone was initially concerned about. I just finished a short course of radiation and will begin chemo in about a week. I would say to you don't ignore any concerning systems, and push for imaging if any do occur. I had mentioned my back pain in June as soon as it started but was not taken seriously until August after a physical therapist I had been referred to by my PCP thought I should be seen. I am trying to remain positive and hope that the chemo and radiation will help. My very best to you in your recovery. Research shows that 90% of clear cell patients diagnosed in an early stage never see a recurrence of the disease. I hope you are in that 90%.

Jump to this post


Replies to "Hello - In November 2021 I was diagnosed with Ovarian cancer. I had a complete hysterectomy..."

@kennedy429 Oh, how often do we tell our physicians about something that doesn't feel right including pain and it takes time to be taken seriously. We DO know our bodies. Back pain that wasn't present in the past should certainly be investigated in a cancer survivor.

Your post shows how you are approaching your treatment with hope. Thank you so very much for sharing and offering encouragement and hope to @carla702 and @sm22. My very best to you in your recovery.

Would you please post again and let me know how your treatment is going?