Endometrial Clear Cell Cancer: Looking for survivor stories and info

I was diagnosed with clear cell endometrial cancer in September 2023. I’ve had a hysterectomy, chemo, 25 radaiations, 2 brachytherapy (that was mentally and physically the worst to be strapped down while being painfully ripped open) ( anyone else have such a bad experience with brachytherapy?) followed by more chemo. Now I’m being checked every three months to see if it has returned. I’m struggling with being grateful to be cancer free for the last two and a half months and trying to prepare myself for the likely reality it will be coming back. I want to be excited about life but don’t want to be crushed when it returns.

@teechur89 Welcome to Mayo Clinic Connect and to the Gynecological Cancers Support Group. I'm going to borrow a greeting I've read in other groups which is basically we are a club and a group that none of us wanted to belong to. We are here to support one another and in return by sharing our stories we support someone else.

You have really through a very difficult time over the past 11 months. I had a hysterectomy for endometrial adenocarcinoma in 2019 and with a recurrence in 2021 I had 25 sessions of external radiation followed by 2 sessions of brachytherapy. I was fortunate in that I did not have a painful or negative experience with brachytherapy and I honestly don't know what is different about brachytherapy from one institution to the next. Like you I struggle to stay grateful to be cancer free knowing that at each surveillance appointment something suspicious could be found again. My next appointment is in November as I'm now checked every six months so I can at least spend those first few months putting cancer in my rear view mirror. The closer I get to each appointment the more nervous I get. I've since learned from others and through education classes that this worry is common with cancer survivors. I suppose the best we can do is to move forward in our lives, not put off anything that we want to do like travel or take on new community or volunteer opportunities and hold our relationships close. That's what I try to do in the face of reality.

What do you do or how do you remind yourself to live your life after such a trying year?

I try to keep doing what I normally would be doing. I was so determined to stay the course. In May after my 5th chemo I still showed up to volunteer as I have been doing for the last 26 years. My watch clocked me at ten hours to walk a mile. I probably shouldn’t have been there but I so look forward to volunteering. I remember to look back at how exhausted I was then and remind myself I am getting more stamina back , just not as quickly as I would like. I lost my husband three years ago to colon cancer. Despite a good reading on his colonoscopy six months before and numerous scans the doctors did not diagnose his cancer until it was stage 4 and he died less than three months later. I took a medical leave from my job to care for him at home. I was clueless that he could pass so soon. I retired from a job that I loved to deal with my cancer treatments. My sister and I still have two more camping trips planned yet ( we already did three weeks of camping this summer ). I adjust and do less hiking than I would like to normally have done, I appreciate hearing your positive words and sharing a part of your story with me.

I am awaiting a plan for my second set of cancer treatment. I was diagnosed with peritoneal carsanomatosis in fall 2022. I had 8 rounds of pacitaxel and carbonating. HIPEC and a debulking and a hysterectomy. Cancer treatment went well. I did not get sick. It did leave me with extreme neuropathy. I am walking on my own now but hands and feet are numb. I am concerned that the next treatment will continue to irritate the neuropathy . I am hoping someone has had similar treatment and has gone on with the second plan. Thanks to all and staying positive does help. I am blessed with family and friends

Hi pat2628,
I had paclitaxel and carboplatin for my endometrial serous cell carcinoma--6 rounds 1st-line treatment. I had a bad reaction to the pac. during the 1st infusion, so I was given nab-paclitaxel thereafter. During the treatment I experienced severe neuropathy in feet especially; fingers were also affected but not as severe. I've just read that europathy is the side effect of paclitaxel, and that nab-paclitaxel causes worse neurpoathy than the plain paclitaxel. My neuropathy is still bothering me 5 months after my last treatment.
So, I would find out if you are receiving the nab version. If so, you might want to discuss this with your oncologist.

Hi. You might be able to have the dosage reduced by your team, which might help with your symptoms. One thing that might help is to keep your fingers moving by knitting or crocheting or any activity that makes you practice fine motor skills. Hope this can resolve positively for you. Best wishes.

Thanks gisellef. I also rotate my ankles and clench and point my toes, to help circulation.

Hello teechur, I am sorry you’re struggling, but glad to hear you are done the treatments. I am very grateful to be three years cancer free after my stage three clear cell uterine diagnosis. I also had chemo radiation and brachytherapy. I am not sure what you have been told and I hear a lot of people on the Facebook group expecting it to return. I know it has a higher rate than other cancers of returning, but there are many ladies who are doing well, even after quite some time. I am doing my best to stay positive but no, it is very scary and worrisome. I also found it helpful to speak with the counselor at the center where I was treated. Please let me know how I can support you.

@ejohn Hello and thank you for providing support to @teechur89 and to this Discussion.

Thank you, too, for letting me and others know that you are 3 years into cancer survivorship after a diagnosis of Clear Cell Uterine Cancer, Stage 3. I know only too well how the spectre of recurrence looms in the back of one's mind. Getting those thoughts "out there" with a counselor is a good idea. Thank you for sharing that.

Are you still returning for surveillance appointments? If yes, how often and what tests or exams are done?

Thanks for responding. I was diagnosed in July 2024 with clear cell uterine cancer. I'm have a mixed clear cell serous HER2. Stage 3. But in saying that everything was contained no lymph node involvement or cells in pelvic washing. So that's good. I'm had one round of chemotherapy. I feel great but my white blood cells are low and the freaking doctor's office choose to message me last night at 6 pm. I have called and message them and all I have is crickets. I'm so angry I have no one to ask important questions.

I have a second opinion appointment in 2 weeks. I have the attitude that if he seems right and I get assurance when things happen especially the first will I get to speak with a person about what to do I switching doctors mid stream. I've lost confidence in my current guy's staff