Letrozole, recent stage 1 diagnosis and menopause stuff.

I am in the Austin area. Not so much of the rest of your post applies, but I'd like to meet up after early May. (I'm still in isolation and hope to travel soon, so I can't get sick.) I'm MMMT-E carcinosarcoma of the uterus, Stage 1A. I felt fine inside after the hysterectomy almost immediately. I have to stay on top of IBS type issues.

Barbara

Hello everyone! I’m new here and was diagnosed with ovarian cancer. A huge growth was on my right ovary and was removed February 2. Once the growth was found - I was experiencing pain in my right pelvic area- I went back to my gynecologist and they did a CA-125 and my numbers were about 16. The growth was removed with a full abdominal cut and a full hysterectomy was done along with removal of some lymph nodes. Cancer was only found in the growth not in any lymph nodes. My gynecologist oncologist recommends chemo - 6 cycles every 21 days. I’m not sure yet what chemo medications they will be recommending. Has anyone else experienced a low CA-125? My ovarian cancer is stage 1.

Thank you so much for your input. I will let you know after I see my oncologist. Blessings to you🙏

Hi, Ladies

I usually hang out on the Uterine board where we are very active! But I check here occasionally!

I was diagnosed August 2920: Stage II, Fallopian tube cancer, secondary peritoneal ( in my pelvis), both endometriod adenocarcinoma. CA125 before diagnosis: 20.

There are many threads on the UB related to 1) chemotherapy…many of us had a paclitaxel & Carboplatin combination. …Many have experience with 2) radiation & there are several threads about 3) CA125. I personally hate that test and that number because it is “not a good indicator” for me and yet causes great angst!

I wish y’all well with your treatments. ❤️

Hugs, A

Hi! Yes, I finished chemo in March 2021.

I’m taking Zejula (100 mg ) per day to prevent a recurrence. My chances of recurring are only about 20% anyway, and by taking the immunotherapy the chance is probably reduced to almost nothing. Fingers crossed! The recommended dose is 200mg, but my bloodwork wouldn’t hold up to it and I had to have blood infusions twice because my hemoglobin was dangerously low.

Since it seems like there are several of you on this thread that are somewhat new, I’ll answer several questions! SSM is also active on the UB!

I felt like for several months post-hysterectomy that my pelvis was what I called “all higgily-juggily!” Like, there was open space there now, and stuff was moving around! I did some research and found that the uterus kind of serves as a buffer organ for your other organs…other organs can bump up against it, instead of into each other. So, that feeling was not just my imagination! Wearing an abdominal binder helped immensely!

You can click on anyone’s screen name and go to their profile page to read their stories. It can be very helpful to read how things went for them.

The thing is….with ovarian and Fallopian tube cancers, they are kind of what I refer to as “out and about” cancers (this is totally a term I made-up and is not scientific!)….free-wheeling in the pelvis, rather than contained within an organ. My analogy is that it’s the difference between a horse grazing in a pasture, versus one housed in a barn. So, my hysterectomy report included a positive peritoneal wash and not just a tumor in the tube, but also embedded in old endometriosis tissue in three spots. In second surgery for staging, 4 other tiny tumors were removed from the lower part of my pelvis…also embedded in ancient endometriosis tissue.

I wanted to go through chemo less than the next girl, but it was the best way to save me and prevent recurrence. The bottom line is…and all the ladies on the UB would tell you the same thing….you want to do everything you can to rid yourself of cancer during first-line treatment. That offers your best chance to avoid recurrence and enjoy long-term survival.

Hugs, A ❤️

Hugs back to you❤️

Re other tests beyond CA 125, I was able to get a personalized blood test made for my tumor by Signatera that checks for traces in my bloodstream. CA 15 is useless for me, but yes, as thatblondegirl says, somehow still yet another source of anxiety, when we don't need more! My CA 125 has never been higher than 15; ranges 8-15.

I know! And I've read it can shoot up right after your first chemo. supposedly it's better for ovarian than for uterine, though, and some well regarded oncs say it's zero help for my cancer. It's really just an inflammation marker, as I understand it. Maybe mine is low because I take a baby aspirin every day. (Note: always run your meds by your gyn onc; I know baby aspirin might be a yellow or red light choice if you have clotting issues.) I hope so much that my personalized test pans out & then everyone can get that made for their tumor. Early days yet...Oh, one useful thing an out of state onc told me (all of us), "Do not obsess about small changes, like 8 rises to 10; that is absolutely meaningless & is well within the range of lab draw to lab draw inconsistency". Good advice, I thought.