1. < Gynecologic Cancers

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

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?

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

stparker54 | @stparker54 | May 13, 2020

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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1 reply
starko | @starko | May 13, 2020
In reply to @stparker54 "I was just diagnosed with clear cell uterine cancer, a rare, aggressive form of cancer with..." + (show)
@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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stparker54 | @stparker54 | May 14, 2020

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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stparker54 | @stparker54 | May 14, 2020
In reply to @starko "Susan, you are incredibly strong,which means you can get through this as you have your other..." + (show)
@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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stparker54 | @stparker54 | May 17, 2020

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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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 17, 2020
In reply to @stparker54 "Hi. I understand there's a blood test -- CA-125 marker -- that you can take to..." + (show)
@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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sm22 | @sm22 | Sep 7, 2022
In reply to @bruges "Dear @kate123, I hope you are recovering well from the surgery. Did you have a Wertheim..." + (show)
@bruges

Dear @kate123, I hope you are recovering well from the surgery.
Did you have a Wertheim procedure?
Did they remove a lot of lymph nodes?
Did the doctor propose any adjuvant therapy?
I had my uterine clear cell carcinoma diagnosis also beginning of January and had surgery a few weeks later.
It was a Wertheim plus removal of 55 plus lymph nodes.
The recovery takes longer than I thought but I listen to my body and rest whenever I need to.
Ever since I have, alas to no avail, been trying to find other women who have uterine clear cell carcinoma but we are indeed a very rare breed 🙂
And also because it is such a rare one, it is not the kind of cancer that attracts big pharma to invest in research into this specific one.
I so understand your fear about not knowing where it might resurface.
The surgeon told me as well that they caught it early on so I do think that is a major positive factor for both you and me.
Can I ask you how old you are and if you were already premenopausal or menopausal before the surgery?
All the best, Kate!

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hello - I was diagnosed with Clear cell EC III in June of 2022. I've had the radical hysterectomy as well as lymphonodectomy because the lymph nodes were affected in both the pelvic and para aortic region. The doctors wanted me to have both chemo and radiation, but after an anaphylactic reaction to Taxol, I have decided to just do radiation. How did you respond to your treatments.
thank you -

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1 reply
carla702 | @carla702 | Sep 8, 2022
In reply to @sm22 "hello - I was diagnosed with Clear cell EC III in June of 2022. I've had..." + (show)
@sm22

hello - I was diagnosed with Clear cell EC III in June of 2022. I've had the radical hysterectomy as well as lymphonodectomy because the lymph nodes were affected in both the pelvic and para aortic region. The doctors wanted me to have both chemo and radiation, but after an anaphylactic reaction to Taxol, I have decided to just do radiation. How did you respond to your treatments.
thank you -

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I was diagnosed with clear cell endometrial carcinoma in July. It was initially discovered after painful metastasis to hip and sternum, as well as other smaller bone lesions in pelvis and spine. I had radiation to those 2 most painful areas and am now undergoing chemo (carbo-taxol) which I’m tolerating ok. No hysterectomy as they wanted to expedite treatment. Maybe later depending response to chemo. I also need hip surgery due to pathological fracture and bone loss, so in a wheelchair until then.
There seems to be little solid research due to rarity, I’m considered stage IV due to Mets outside of pelvis but moving forward with hope.

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1 reply
sm22 | @sm22 | Sep 8, 2022
In reply to @carla702 "I was diagnosed with clear cell endometrial carcinoma in July. It was initially discovered after painful..." + (show)
@carla702

I was diagnosed with clear cell endometrial carcinoma in July. It was initially discovered after painful metastasis to hip and sternum, as well as other smaller bone lesions in pelvis and spine. I had radiation to those 2 most painful areas and am now undergoing chemo (carbo-taxol) which I’m tolerating ok. No hysterectomy as they wanted to expedite treatment. Maybe later depending response to chemo. I also need hip surgery due to pathological fracture and bone loss, so in a wheelchair until then.
There seems to be little solid research due to rarity, I’m considered stage IV due to Mets outside of pelvis but moving forward with hope.

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I wish you all of the best and a full recovery. Yes there seems to be so little research or support for people with this type of cancer.

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1 reply
rainna | @rainna | Sep 9, 2022
In reply to @sm22 "I wish you all of the best and a full recovery. Yes there seems to be..." + (show)
@sm22

I wish you all of the best and a full recovery. Yes there seems to be so little research or support for people with this type of cancer.

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Is clear cell identical to papillary serous uterine cancer?

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