Clear cell carcinoma?

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

I 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.

Daisy @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?

For those of you diagnosed with clear cell adenocarcinoma.... Do you know is you or your mother was exposed to Diethylstilbestrol? There are many DES Daughters who have been successfully treated for clear cell.

CCC diagnosed September 24.
Breast cancer survivor 10 years now. Both are Stage 1. No info as to DES. My problem started at 58 months of Tamoxifen treatment.
Had 1 tiny spot of what could have been blood.
Endometrium was 14.
Asked for a hysterectomy and was advised to just follow up. I was closely followed every 6 months with scans and a PAP came back with glandular cells. Demanded surgery.
Had robotic total hysterectomy with BSO. Frozen section was negative. Honestly it was easier than going to the dentist. Follow-up a week later... fortunately and luckily for me...pathology found a small polyp with clear cell carcinoma. Had to have same surgery over again 8 days later. Had 5 brachytherapy treatments. Seeing gynecological oncologist every 3 months. So far after 13 months no issue. I'm 74 . Having breast cancer,
taking Tamoxifen and older age are precursors... in retrospect I regret not insisting on the hysterectomy 4 years sooner at the onset.
Both my breast oncologist and gynecologist of 20+ years agreed to follow up. I tell everyone and anyone on Tamoxifen for breast cancer to be aware. I'm at a well known cancer center in a very populated and progressive city.
I can hope to stay healthy 🙏 there is little info on CCC
treatment for survival.

I am 43 and have clear cell ovarian also. Was diagnosed Feb 2025 and had debulking surgery and hysterectomy. I only had one tumor but was stage 3a. They think it grew out of very advanced endometriosis and specifically an endometrioma that I had for at least a decade. I had microscopic cancer after debulking, so I did 6 rounds of carbo/taxol. Initially had a good reaction with ca-125 normalizing after only one round. That's usually a good sign for long term prognosis! But three months after chemo, my cancer was already back. So they labeled it "chemo resistant" and said it's incurable. I have low volume disease with patches of small cancer in the peritoneum (not in any organs yet) and a couple of mildly enlarged lymph nodes.

Now I am on a new treatment of Keytruda + Avastin + Cytoxan. I've only had 2 sessions, so it's too early to know if it's helping or not. I definitely feel better since starting the treatment. And I have read some promising case studies about Keytruda, so I am hopeful. I also visited Mayo to look at clinical trails, but it seemed standard care was my best option right now.

It's very scary and uncertain. I wish there was more information and options for us. Right now, I have some occasional, mild pain in abdomen, which is probably due to fluid (ascites) or irritation in those areas. I'm still able to work full time, go for daily walks, and live my life for the most part. I get tired easily, and sometimes eating can be a struggle. I don't always have an appetite, and sometimes have nausea.

I hope and pray that they come up with an effective treatment or cure. My doctors have said the prognosis data is out of date (usually not including new immunotherapies or emerging treatments) or not specific to clear cell. So it's hard to even know what to plan for.

@oregonrain7

Hi Kathy,
Thank you for sharing your experience. I really appreciate it. Wishing you Comfort and joy. 🙂

@kristiw From what you have shared it looks like this has been a very tough year for you. It's encouraging that you've decided to live your life including your work and exercise. Like you, I hope and pray for new treatments for these gynecological cancers and especially for clear cell carcinoma.

The hardest for me has always been worry. I do better now through my own coping skills that I have learned. How do you cope with any anxiety that comes up?

Re DES and Clear Cell endometrial cancer: I know that my mom took it to maintain my older sibling’s pregnancy, but not when she was pregnant with me. I sometimes wonder if my long term birth control use to control major menstrual issues in my 40s & 50s might have been a cause. Nobody really knows.

@kmfdallas
My mother lost her first baby. My sister was born one year later. I was born four years after that in 1951. There is a possibility that my mother was prescribed DES. Tried to find out from the small-town doctor, but the medical records were destroyed. He also was the pharmacist. So no luck there.
My sister had breast cancer in 2010. I had breast cancer in 2015 and clear cell in 2022.