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

I believe there is a difference but don’t know what specifically

@rainna @sm22 These two cancers are not the same.

-Uterine Cancer and Endometrial Cancer

There are different types of uterine cancer. When I was diagnosed with uterine cancer (endometroid adenocarcinoma) I learned that while cancer can occur and affect many organs and systems in the body, there are many, many different types of cancer.

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%.

@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?

@naturegirl5 Thank you for your kind words and encouragement. I have a port placed next week, which my niece, a nurse practitioner, urged me to push for. My chemo starts the week after that. I will be sure to write back to let you know how things are going. In the meantime, I am walking a few miles a day while I still feel well enough to do so, and I'm listening to podcasts that are either educational or provide me with hope. I haven't looked yet at what podcasts Mayo has to offer, but I'm particularly liking MSK Cancer Straight Talk as well as Campfires of Hope by Epic Experience. They have a very good one on on living beyond stage 4 cancer. My world has been turned upside down like so many others here, but I'll move forward one step at a time. All the best.

@kennedy429 You are certainly proactive. Bravo for following the advice of your niece. When I was diagnosed with endometrial cancer in 2019 I continued to exercise too. I took a long walk in Rochester the day before my surgery as I didn't know what I would be able to do afterwards.

I haven't listened to the MSK Cancer Straight Talk or Campfires of Hope. I will look for those on my podcast app as I'd like to listen to these when I walk. Yes, it is hopeful to hear these and you can listen to them whenever you want.

I'm wishing you continued positive energy.

Interesting about the back pain. I have begun experiencing the same thing and feel like I am not taken seriously by my doctors. It makes me nervous because I had severe lower back pain before I was diagnosed with IIIEC in June. Glad to know I am not the only one who feels this way.

Hello- I was diagnosed with ECIII clear cell carcinoma in June of 22’ with surgery in July of 22’. I just got finished with radiation last week and go back for a check up in 6 weeks. I really liked my radiation oncologist and her whole team and the support they gave me.. I was advised to get chemo first and then have radiation, but I had a horrible reaction to Taxol and decided to forgo chemo and just do radiation. Sorry for being long winded, but has anyone with a similar diagnosis just done radiation without chemo? Praying I made the right choice but I just personally felt I would be a bad chemo candidate. Thx

I have also heard from a few different sources that clear cell cancers don’t respond that well to chemo.

Hi, after my diagnosis I just started researching every medical endometrial clear cell study I could find.
Since it’s a rare cancer, there aren’t as many studies as say, about breast cancer, or a more common version of endometrial cancer.
But the studies I did find all showed that clear cell responds a lot better to radiation than to chemo.
So there I do think you made the right call. Also, this journey is different for each and everyone of us. I think you truly listened to your body when it reacted in such a way to the chemo. And shouldn’t we all listen to our bodies?
Wishing you the best and a speedy recovery!