Endometrial Carcinoma: Rare, aggressive, hard to treat but don't worry

Posted by kate123 @kate123, Aug 13, 2016

Hello, I’m new to this group but would like to find others with my type of cancer to chat with.
I was duagnosed in January with clear cell carcinoma endometrium. (I had uterine cancer previously but was lost to folliw up) I had surgery in February and had everything removed including lymph nodes. I was told they caught it early but to remember it is a metastatic cancer and can return anywhere in my body with no signs or symptoms. I was also told there is no test to detect recurrence.
I’m caught between feeling relieved and grateful and terrified it will hit me again out of the blue) Is there anyone out there who can relate?

I was just diagnosed with clear cell uterine cancer, a rare, aggressive form of cancer with a poor prognosis. I'm scared. I've survived renal cell cancer (right kidney removed in 2008), metastasis of RCC to my brain (I was told at the time that I'd be dead by June 2010), a recent lymphoma cancer scare (my onc says I don't have it, but an enlarged lymph node will have to be closely monitored) and now I have a rare form of uterine cancer. I've been sad since the doctor gave me the news yesterday. Now I'm mad and pissed. Susan54

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@stparker54

I was just diagnosed with clear cell uterine cancer, a rare, aggressive form of cancer with a poor prognosis. I'm scared. I've survived renal cell cancer (right kidney removed in 2008), metastasis of RCC to my brain (I was told at the time that I'd be dead by June 2010), a recent lymphoma cancer scare (my onc says I don't have it, but an enlarged lymph node will have to be closely monitored) and now I have a rare form of uterine cancer. I've been sad since the doctor gave me the news yesterday. Now I'm mad and pissed. Susan54

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Susan, you are incredibly strong,which means you can get through this as you have your other diagnoses. You are also very brave. Whatever kind of genes you have or life style or determination, it will see you through this again. Stay brave!

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I have just been diagnosed with clear cell uterine cancer and, like you, I'm terrified. I have been searching the internet for all the information on this disease and have found nothing to be optimistic about. I'm scheduled for my first visit with my gynecological oncologist next week and for a PET Scan to see if it has spread to any other parts of my body. Susan Parker

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@starko

Susan, you are incredibly strong,which means you can get through this as you have your other diagnoses. You are also very brave. Whatever kind of genes you have or life style or determination, it will see you through this again. Stay brave!

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Thanks, I needed to hear that.

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Hi. I understand there's a blood test — CA-125 marker — that you can take to determine if your endometrial cancer has spread to another part of your body. Susan54

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@stparker54

Hi. I understand there's a blood test — CA-125 marker — that you can take to determine if your endometrial cancer has spread to another part of your body. Susan54

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Hi Susan @stparker54, I'd like to add my welcome. CA-125 can be used to monitor cancer treatments, and may be an initial indicator of spread. But more tests would need to be done to confirm or rule out metastasis. You can read more about it here:

– CA 125 test https://www.mayoclinic.org/tests-procedures/ca-125-test/about/pac-20393295

You sure have had more than your fair share of cancers. This must've come as quite a blow to have a rare, aggressive form of uterine – clear cell uterine cancer. You might also be interested in this discussion:
– Uterine clear cell carcinoma https://connect.mayoclinic.org/discussion/uterine-clear-cell-carcinoma

Susan, what treatments have been suggested for you?

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