Clear cell carcinoma: Would you share what to expect in the future?

To Hope52:
I was diagnosed with CCEC four years ago, stage 2. They threw everything at me because of the aggressive nature of the cancer and the spread outside of my uterus. I had a complete hysterectomy, external beam radiation and brachytherapy. My chemo was the standard carboplatin and paclataxel. I was also in a clinical trial for Keytruda, which was infused with the chemo. I still do not know if I received the drug or the placebo. But prior to my final & 6th infusion I was kicked out of the trial because I had recurrence to lymph nodes. I was also deemed chemo-resistant as a result of the spread.
Have you had genetic testing? Did your oncologist send your pathology sample for biomarker testing? The latest treatments beyond chemo & radiation are mostly geared towards biomarkers that might show up. (I have no specific markers, so no new med options for me as of yet.)
Re Chemo: easier than I expected. I never threw up but I was tired and not particularly hungry for a few days. Then I slowly revived. Soup and smoothies got me through until my appetite returned. I knew that I would lose my hair and prepared ahead of time by ordering a wig. I was less prepared to lose a lot of my eyebrows and some eyelashes. Who knew I would be vain about that?
Re External Beam Radiation: the routine of going daily for 5(?) weeks was not fun. There was no pain and the techs were great. The machine is noisy. I learned too late to dress in comfy clothing with no metal, which saved on changing time. I played word games in my head to get through each session. I do have some long term GI side effects from the radiation, but mostly manageable.
Re Brachytherapy: It is weird but not painful. (Who wants a hard radiation “tampon” pushed into their vaginas?!!!!)
Considering my cancer stage and grade, I never expected to still be alive today, so maybe the troika of treatments beyond the surgery was the right answer.
Do write down all of your questions for the oncologist and have somebody come with you to hear the answers. Recording the conversation with the doctor (if consented) can be helpful.
Feel free to ask any more questions that come to mind. Your “sisters” here will help, as we are all in this together. Please keep us posted. Sending you best wishes during this scary time.

@ffr thank you so much for sharing and I hope you are doing well. I see my oncologist on Tuesday and hopefully will decide on treatment. I have had chemo before and realize it is so different than in 1993. I do have a lot of questions for my oncologist, just hard to decide on best treatment for myself.
Thank you so much for your information. Very much appreciated. Stay strong!!

@hope52 I would like to add my welcome to Mayo Clinic Connect and to our Gynecological Cancers Support Group. I see that @colleenyoung tagged a few of our members who were also diagnosed with clear cell carcinoma and they will join in. We share our own experiences with gynecological cancer and support one another here.

I did not have chemotherapy when I was diagnosed with endometrioid adenocarcinoma but I did have radiation therapy including two treatments of brachytherapy. What questions do you plan to ask your oncologist? How can we help you with your questions?

@naturegirl5 Thank you so much for replying to my post. I have a lot of questions for my oncologist, a few are mainly best treatment for endometrial clear cell. Vaginal brachttherapy vs chemo? She said treatment is up in the air since stage 1A did not have to do anything but observation. I do not feel comfortable doing that. CT did not show it had spread, which is a blessing. If they did DNA testing, any myometrial involvement. Side effects if do brachytherapy-bladder and bowel, side effects to chemo-I still work part time and live alone, so need to take care of myself and work. Mainly want to know best treatment for me.
Thank you for any information you or anyone can give me.

@hope52 I come prepared to my appointments with my list of questions in front of me. I take notes and save all of these in a folder. Some women here have shared that they keep all of their information in a 3 ring binder. In my view it helps to come prepared for appointments and to keep information organized at home.

Your pathology report should include information on myometrial involvement and any other testing that was performed. You can go over that with your oncologist during your appointment.

At my first appointment with my gyn/oncologist following my hysterectomy she gave me a Cancer Survival Plan that was personalized for me. The plan included my results including the pathology report, how often I should return for cancer surveillance appointments, specific information about the cancer I was diagnosed with (endometrioid adenocarcinoma) , what signs and symptoms I should look for in the future, and the risk of recurrence. I still have the Survival Plan in my files and when I need information about initial diagnosis and recommendations I pull out the plan.

I was surprised that at that appointment my gyn/oncologist also recommended observation. I returned every 6 months for a physical exam, no imaging, and no other treatment.

My surgery and subsequent appointments have all been at Mayo Clinic. So, my pathology reports and clinical notes following each appointment are all available to me digitally in my patient portal that I can access at any time.

My husband was present at my appointments which I found helpful as he is another "set of ears". Do you have someone who will go to your appointment with you?

@naturegirl5 Did you just opt for observation or did you have any sort of treatment? How long ago were you detected? The 3 ring binder is a great idea and headed to go get me one. Thanks.
Not sure if someone is coming with me or not. My daughter was planning on coming, but not sure if she can. My dearest friend might if she is up to it Tuesday-she is going through chemo herself. Will try to have someone if possible.
Thank you for all your information.

@hope52 I was diagnosed with endometroid adenocarcinoma, in 2019, was referred to Mayo Clinic and that's where I saw my gyn/oncologist and had the radical hysterectomy. I followed my gyn/oncologist's recommendation after surgery. She told me that with my Stage 1a no other treatment was indicated. If I did have a recurrence it would most likely occur at the vaginal cuff within one or two years. So, I returned to Mayo Clinic every six months for a physical exam including a full pelvic exam. In 2021 two years after my initial diagnosis and surgery a little tiny polyp was found on my vaginal cuff during the pelvic exam. The polyp was removed, sent to pathology, and it was a recurrence. A PET/MRI was ordered at that time and it showed nothing which was reassuring. Because of this recurrence I followed the recommendation for radiation therapy. I continue to return to Mayo Clinic on a regular schedule and because of the recurrence I have a CT and physical exam. I've been NED since 2021.

You could ask your oncologist what the standard practice is for clear cell carcinoma Stage 1a. If you continue to have doubts you might ask for another opinion. If the recommendation is to return for observation in the future will this include imaging (CT) along with a physical exam?

To Hope52:
I was diagnosed with CCEC four years ago, stage 2. They threw everything at me because of the aggressive nature of the cancer and the spread outside of my uterus. I had a complete hysterectomy, external beam radiation and brachytherapy. My chemo was the standard carboplatin and paclataxel. I was also in a clinical trial for Keytruda, which was infused with the chemo. I still do not know if I received the drug or the placebo. But prior to my final & 6th infusion I was kicked out of the trial because I had recurrence to lymph nodes. I was also deemed chemo-resistant as a result of the spread.
Have you had genetic testing? Did your oncologist send your pathology sample for biomarker testing? The latest treatments beyond chemo & radiation are mostly geared towards biomarkers that might show up. (I have no specific markers, so no new med options for me as of yet.)
Re Chemo: easier than I expected. I never threw up but I was tired and not particularly hungry for a few days. Then I slowly revived. Soup and smoothies got me through until my appetite returned. I knew that I would lose my hair and prepared ahead of time by ordering a wig. I was less prepared to lose a lot of my eyebrows and some eyelashes. Who knew I would be vain about that?
Re External Beam Radiation: the routine of going daily for 5(?) weeks was not fun. There was no pain and the techs were great. The machine is noisy. I learned too late to dress in comfy clothing with no metal, which saved on changing time. I played word games in my head to get through each session. I do have some long term GI side effects from the radiation, but mostly manageable.
Re Brachytherapy: It is weird but not painful. (Who wants a hard radiation “tampon” pushed into their vaginas?!!!!)
Considering my cancer stage and grade, I never expected to still be alive today, so maybe the troika of treatments beyond the surgery was the right answer.
Do write down all of your questions for the oncologist and have somebody come with you to hear the answers. Recording the conversation with the doctor (if consented) can be helpful.
Feel free to ask any more questions that come to mind. Your “sisters” here will help, as we are all in this together. Please keep us posted. Sending you best wishes during this scary time.