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

@naturegirl5

Hi Helen, thank you. I Was diagnosed in August 2024. I started the chemo and radiation in November 2024.

Surgery was Feb. 10, 2024.

I’ve been miserable and trying to sort out where my problems are coming from.

The day after surgery I woke up with my legs numb from hip to knee with sharp stabbing pains. I had to stay in hotels for weeks, since I couldn’t climb the stairs to my apartment. I’m 74 and this neuropathy has ruined my life. My surgeon snapped at me angrily just before the surgery. I think she nicked a nerve or something down there. I’ve had lifelong major depression. For over two weeks, I slept for 16-20 hours a day… I thought maybe it was a side effect of the cancer but I can see it is not. Sorry for the rambling and self pity.

@naturegirl5 Thank you for the response! Yes, it's been quite a year! Before all this, I was healthy and happy. No history of cancer in the family, so we were all blindsided. Now it's hard to remember what my life was like before cancer.

I also struggle with anxiety, especially around scan times and when getting updated bloodwork. I see a therapist who specializes in cancer and chronic illness, and she has given me some good tools for calming my nervous system. I've also learned that distraction can be healthy. Books, movies, making art, talking to friends and family. Sometimes I tell myself: "Ok, you can feel anxious for 10 minutes. Then we need to move on today." I think the feelings have to get out, but we don't have to let them take over.

@oregonrain7
Very similar story to mine. We will never know that missing piece of maternal history.

I am a DES Daughter and DES Advocate. It was prescribed heavily in the 1950s. Near impossible to get records that old. DES Daughters are at a higher risk for breast and reproductive cancers. I have attached a DES Pamphlet.

Karen

@hort37b460 Your description of the after-surgical numbness and pain sounds just awful. Rambling and your self-described "self-pity" is what we are here for. I know surgeons are human however for all of us I wish for compassionate and patient care. It sounds like you did not get that during a very stressful time in your life. We don't look at these complaints as self-pity. We wish to support one another through these very difficult health and medical situations.

I recall that the inside of my right thigh was number for almost a year after my hysterectomy but there wasn't any pain. I wondered what happened and since it has resolved I didn't ever find out. I figured it could have been the way I was positioned during the surgery as something like that happened to my left arm and hand during kidney surgery I had in 1997 - the doctor explained to me that the numbness was from positioning during surgery and it go away.

Do you still have the numbness and pain? Difficulty walking? Do you see a therapist or take medication for depression?

@kristiw Wow, Kristi, you are doing everything you can to get through this. Seeing the therapist who specializes in cancer is a big plus. It's great that you have coping tools you can use. Some distraction is healthy especially if it's the kind you engage in. I've learned that trying to avoid my emotions by continuous distraction isn't healthy for me. Like you, I give myself time to feel anxious and then I make the effort to put one foot in front of the other. It's a challenge and something no one at my age (73-years-old) learned when we were growing up.

Both of my parents had cancer and my brother had prostate cancer. My brother and I decided not to ask "why me?" and instead had told ourselves over the years - "why not me?". We both have led healthy lives. I visited my brother while he was getting pelvic radiation therapy and when he went for a walk with his dog I could barely keep up! He's 4 years younger than me.

Do you also exercise? What do you like to do?

I have been diagnosed with stage 1A endometrial clear cell carcinoma. No lymph node or omentum involvement. Treatment is up in the air-radiation or chemo. Anyone had either treatment? I am torn as to which I should do. Thanks

@hope52. Welcome to Mayo Clinic Connect and to our Gynecological Cancers Support Group. As we wait for others to jump in with their experiences and support I'd like to offer my thoughts.

There are several discussions in our support group about radiation therapy and chemotherapy. There are also members who have been diagnosed with clear cell carcinoma.

Here are a few active discussions in our support group you might like to read through:

-- https://connect.mayoclinic.org/discussion/clear-cell-carcinoma/

Here is an active discussion on different kinds of radiation therapy:

--https://connect.mayoclinic.org/discussion/types-of-radiation-treatments-for-gynecological-cancers/

Where are you in time in your treatment? Did you have a hysterectomy and radiation therapy and/or chemotherapy are now recommended? What did your oncologist(s) recommend for you?

@hope52, I'm tagging @oregonrain7 @ffr @jar1591927 @kristiw @hort37b460, who, like you, have clear cell carcinoma. Some have had chemotherapy or radiation or both and can share their experiences.

@hope52, do you know what type of chemotherapy and what type of radiation is being recommended? Have you decided?

@colleenyoung not sure on the chemo. Radiation is brachytherapy. I would like to do chemo, but live alone and work part time. Not sure I could handle that. My CT scan was negative.
Thank you for any information.