← Return to Uterine clear-cell carcinoma, chemo treatment unknowns

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@bruges

Hello, I am new here.
Beginning of the year I received my uterine clear cell carcinoma diagnosis. It is a very rare cancer and I was wondering if there were other women here who have the same diagnosis.

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Replies to "Hello, I am new here. Beginning of the year I received my uterine clear cell carcinoma..."

Welcome to Connect, @bruges. Uterine clear-cell carcinoma is very rare. @kate123 has also posted on Connect about this rare type of cancer. And there are several members are discussing ovarian clear-cell carcinoma here:

- Rare cancer: ovarian clear cell carcinoma https://connect.mayoclinic.org/discussion/rare-cancer/
- Endometrial Carcinoma: Rare, aggressive, hard to treat but don't worry https://connect.mayoclinic.org/discussion/rare-aggressive-hard-to-treat-but-donthe-worry/

Bruges, while we wait for others to join the discussion, let's get to know more about you. When were you diagnosed? What treatments are you or have you had? How are you doing?

I’ve just been diagnosed with same; I have a hysterectomy scheduled for this Friday. Keep your chin up; I’ll be thinking about you It’s a scary illness to face. Have you thought about investigating the possibility of participating in any trials for cancer research?

@bruges Hi. I have the almost as rare uterine serous carcinoma. Surgery 7/2018, dx Stage 1a UPSC with LVSI. I had robotic radical hysterectomy, no cancer anywhere except the uterus and LVSI. Two sentinel nodes were sampled, no cancer. Easy recovery. I had 2 chemo with 3 brachy followed by 2 more chemo. Brachy was recommended due to my stage. The treatment is not terrible, pretty undignified, but everyone was so kind and respectful. I was VERY hesitant to have any radiation due to the side effects short and lon term, but after consultation with my radiologist I agreed. I have had very little short term side effects, diarrhea, which lasted only a few days. For me very tolerable. What sealed the deal for me is that local recurrence in the vaginal cuff is common even for stage 1a. Plus my gyne who did my hysteroscopy removed most of my tumor thinking it was a fibroid during the biopsy which puts me at additional risk. So get all of your questions answered so you can make an informed decision. With a very aggressive serous carcinoma I did not want to take a chance. Hope this helps. The chemo and brachy are the standards for 1a serous by the Nccn.

So glad you got your decision about brachy sorted out. Tough decision but good input from your team. Sorry you had issues with meds. I have an intolerance to most opoiods which make me throw up so my pain relief is dicey at best. But IV pain meds worked. Plus I have renal insufficiency due to long term NSAID use so I can only take them sparingly. All this nonsesnse! I did have just two nodes removed which is called sentinel node biopsy. Have you started chemo yet? Are they suggesting chemo for you? It sounds like you are stage 1a? I am not familiar with the protocols for clear cell. I had some clear cell but predominantly my tumor was serous, so I am classified as serous. I remember the old joke about older people obsessed with their aches and pains, and boy, am I ever the poster girl for that. 😁 I had my surgery, chemo and treatment at Mayo, Rochester. Let me know how you are doing.

Hi! I am Sarah. I had clear cell uterine cancer . Stage 1. I had a full hysterectomy and 25 radiation treatments in one month and 5 implant radiation the next month.(one a week) My surgery was in Jan, my radiation in April and May. I continued to work through it all. Just got worn down from the trips and all. Now in August I turned 65 and retiring in Sept. Just tired and done with work. Want to enjoy life again, this year has been an all around kick in the butt! I am fine physically, need to get my strength back. Dr checks every 3 months. How is your treatment going?

Hello, I am looking to hear more about Uterine Clear Cell cancer. I had a radical hysterctomy last fall with clear cell in 1 lymph node, making it stage III for me. I am about to have my last chemo and then consult with the radiologist. Interested to learn more about the radiation treatments others had, where, the side effects and results. How long to feel you were recovered from chemo and radiation. Thank you

I have just had a total hysterctomy and dr is now recommending radiation now What are pros and cons How does that affect the pelvis bone, bladder and colon?

Hi @ejohn and @cichocki06, I'm wondering if you decided to have radiation and have you started?

I am having 3 radiation treatments the end of the month. Any recommendations?

@ejohn and @cichocki06, I invite you to join the Zoom support group tonight facilitated by Mayo Clinic oncology social worker, @michellewalsh. I'll be there too and we can hopefully connect you with others who have had radiation.

Here are the meeting details.
Women of S-Teal Jax: Candid Conversations about Gynecological Cancers

Zoom Support Group Meeting
Monday, March 8, 2021
5:30 to 6:30 p.m. EST (find your timezone https://www.timeanddate.com/worldclock/converter.html)

Topic:
“Resources and Support” with Michelle Walsh, LCSW and Colleen Young with Mayo Connect

Register in advance:
https://mchealth.zoom.us/meeting/register/v5Erf-qprjooihuuDnHMnXBRD6IxvLlgJA
After registering, you will receive a confirmation email containing information about joining the meeting.