Endometrial Clear Cell Cancer: Looking for survivor stories and info

Welcome, @balajik. I'm tagging several members like @sm22 @bruges @stparker54 @ejohn and others who can share their journey and experiences treating endometrial clear cell carcinoma with you.

In the meantime, you may also wish to see these 2 related discussions:
– Endometrial Carcinoma: Rare, aggressive, hard to treat but don't worry https://connect.mayoclinic.org/discussion/rare-aggressive-hard-to-treat-but-donthe-worry/
- Uterine clear-cell carcinoma, chemo treatment unknowns
https://connect.mayoclinic.org/discussion/carcinoma-of-uterine-body-chemo-treatment-unknowns/
This must've come as shocking news to both you and your wife. What is her treatment plan? How is she doing? How are you doing?

Hello- I was treated for stage IIIC2 at Mayo Rochester. I did radiation only because I had a bad reaction to the Paclitaxel. I was told it was the emulsifying agent, but it was enough for me to know it was not for me. I am hearing promising things about Keytruda from other women and chemo does not have a great track record of treating clear cell. Hopefully the FDA will soon stop making people suffer through chemo before they are allowed to try Keytruda. All the best to you.

I was recently diagnosed similarly. Just now getting treatment plans made, would be interested in the responses . Sending love as we begin this new journey.

@teamama70, welcome. Do you mind sharing what your treatment plan is? How are you doing?

Thank you so much. These help very much as I am going through tough times with my wife’s diagnosis. Thank you.

@colleenyoung , My wife’s laparoscopy radical hysterectomy is over. She was pathologically staged 1a. But since it is a high grade uterine clear cell oncologists have recommended 6 cycles of carbo/taxol chemo followed by radiation. Looks like my wife has to start chemo in another week or two. This is second time she would go through this. First time she went through chemo about 5.5 years back for breast cancer

@balajik It's a blessing that your wife has you at her side for support. I am a cancer survivor for endometrial cancer (endometrioid adenocarcinoma, FIGO Grade 1, Stage 1a). While I did not experience endometrial clear cell cancer I do understand the worries and fears that go along with cancer. I had a recurrence two years after the initial diagnosis and hysterectomy and that was very frightening. Once there was a treatment plan in place I followed the plan (radiation therapy) and my cancer care team in radiation oncology was wonderfully supportive. I'm hoping that will be the case for you and your wife as I can see that you will be with her every step of the way.

How are you feeling?

Going through some tough uncertain times. With surgery over wife needs to start chemo shortly.

Hello @balajik , I know this can be very scary and stressful especially going thru chemo a second time for your wife. I was 3c1 and have been NED for 2 1/2 years. I did 6 round of carbo/taxol, 25 rad and 3 brachy. I have to say for me the chemo was not as bad as I expected. I had a dear friend have chemo for ovarian and later breast, (she is doing fine) and it was much worse. I say that, hoping this maybe is a bit easier for her than the breast chemo. I am on the facebook group and maybe you are too? I would surely get another opinion if you are concerned even if it is online and even if she has started treatment. I was diagnosed during covid and had a second opinion at Duke and then a 3rd at UNC that was online. They are used to doing this. I wonder about the chemo when I hear about others but I am grateful to be NED and hopeful to stay well. I am also grateful to hear of all the others doing well on Keytruda and other drugs. I wish you both the best.

It took a bit to get the plan in place, 6 rounds of chemo then 5 weeks radiation, 2 weeks brachy. In the middle of chemo now. Hoping she has started care now too.