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Clear cell carcinoma?
I have stage 2 clear cell carcinoma with tumor from endometrial cancer. I’ve had chemo, radiation, brachytherapy before a radical hysterectomy and tumor removal. It’s a rare and aggressive cancer with no known cure.
I don’t know what to expect in terms of pain and suffering. Has anyone else had this experience? Would you share what to expect in the future?
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In 2022 I was diagnosed with Grade 3, Type II Clear Cell Carcinoma. IGO Stage 1A Category pT1 / pN0. Has a radical hysterectomy, six courses of chemo (last one was 11/30/22), followed by brachytherapy (no other radiation). My genetic tests (Myriad 2015 & Color Genomics 2015) found that PMS2 was lost. No other issues found (seems like limited genes detected).
I have been doing well. No pain. I am doing everything that I did before. I had low platelets for two years, but they are now at normal levels. The most difficult part has been some anxiety about the clear cell diagnosis. I am doing better with that. It helps to make it past the two-year mark.
Note: I accidentally "reported" your post when I was trying to bookmark it. The choices are next to each other and my old finger did not get it right. I let Mayo note that it was a mistake. Hopefully they will remove the report.
Also, Mayo has a gynecological forum that meets once per month. Attended this has been very helpful. The next meeting is on the 8th.
I wish you well.
Kathy
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4 ReactionsI am a clear cell sister. Diagnosed Jan 2022, grade 3, stage 2. I had the full robotic hysterectomy, chemo, external beam radiation and brachytherapy. I was also in a Keytruda trial during chemo but had a recurrence to both local and distant lymph nodes (2 surgeries) so I was kicked out. My genetic & molecular profiles show no significant markers. I am 3+ years post treatment and have had some low blood counts, GI & bladder issues, and more recently I was diagnosed with lymphedema. All are being managed and fortunately I have no pain. The emotional roller coaster and fear of recurrence is huge, because I know that there are no cures or proven options for CCC with no significant markers. (At least for now.) My follow up CTs are now at 6 month intervals. I do my best each day, prioritizing time with family & friends, but the gray cloud is almost always with me. I try to keep up with treatment & clinical trial updates via SHARE & OCRA webinars, which is sometimes depressing. Also, I have a 1:1 cancer mentor (who has been wonderful), I’ve spoken with cancer social workers, and I still check in with a therapist. This forum has also been helpful. I am happy to “meet” both of you here.
Daisy, what I want you to know is that I have not had much physical pain & suffering. The anxiety about my future, however, is similar to yours. I wish I was more of an optimist than a realist. My therapist has given me some mantras such as, “Don’t get ahead of yourself” and a friend, when I mentioned survival statistics replied, “There's always someone who wins the lottery.” I do pull these out of my head when I need to.
Wishing you peace and a happy holiday season.
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5 ReactionsDaisy @hort37b460, Welcome to Mayo Clinic Connect's Gynecological Support Group. I see that you have already received support from our wonderful members.
I try to keep up with posting the information on the Mayo Clinic Virtual Gynecological Cancer Support Group. They meet the second Monday of each month. The next meeting will be on December 8.
Here is the link to the Discussion where you can find updates.
-- https://connect.mayoclinic.org/discussion/mayo-clinic-virtual-gyn-cancer-support-group/
When were you diagnosed and when did you have treatment and then surgery? How are you feeling?