Endometrial cancer and PBC. Newly diagnosed

[Cat1966]

Hello,

I ve been just one week after diagnosis.

I do not know yet what is going to happen regarding the treatment, as I only know the grade, 2. The biopsy is not completed and I have not seen the oncologist yet.

i have a bout with endometriosis for about 20 years. It had been always thick and my ca125 raised to 900 at some point.

i have endometriosis and adometriosis . But it never been much of a problem for me. My periods were normal, regular and not too painful.

My gyno took a follow up approach and , not even a biopsy. When I was 55, he gave me, elagolix, stopped my periods with 2 years, never even had menopause symptoms. My ca 125 went down to 13-20, and estrogen went down. I officially became menopausal. Endometrium became thinner, 0.35.

i was on yearly surveillance with ultrasound in place. In 2022, there was a 6 mm polyp, that gyno decided to observe. 2023 I was diagnosed with PBC. When I went to see my gyno, he said that there was no change in polyp size based on US, and since I have PBC just diagnosed, he didnt want to do any procedure. 2024 October, 4 months before my US and appointment I noticed tiny discharge that I didn’t have before and 2 months after little blood. I was trying to get an earlier appointment, but I was told to wait till my appointment in January. Two weeks before my us and appointment I started really bleeding, for a day, and then drops only,

us found 22 mm polyp.

And what I found out that my gyno in 2023 missed my results( my polyp was 12 mm) as he looked at the old results. So my polyp grew 4 times in 2 years. What makes me sad that I was under surveillance and this was missed!!!!! And I was so busy fighting for my lliver that I did not verify since I trusted my gyno who was following me for 15 years.

Now I am very anxious how all this went, considering such a substantial growth with 2 years.

I apologize for such a long essay, I am happy I could share with others who are in the same situation.

Thank you

[Merma Moderator]

I am so sorry that you've been going through this for such a long time and that your dr missed a diagnosis. Very stressful, indeed.

I'm curious about how they know it's stage 2. Staging usually happens after surgery - they can see how far the cancer has spread. Is it perhaps, grade 2? There is a great site: nccn.org where you can get a free account and download a Patient Guideline for Uterine Cancer. It even has questions that you can ask your oncologist.

Here's a little hug along with hope: I've been on the ec journey nearly 10 years with four recurrences. I feel fine and will always be on cancer drugs. I swim 3 miles a week. Knowledge is power. Once you know more about your diagnosis, you will be able to ask better questions. In the meantime, do something you like everyday to clear your head a little. More hugs and best wishes....

[Cat1966 in reply to Merma]

Hello,

Thank you very much for kind words.

It is grade 2, that was confirmed. I received a phone call, I am going for blood tests and US and then will be seeing an oncologist, all next week. I assume at this point I will know the complete results of the biopsy on the cell level. I still do not have an appointment for a scan, but I was told that it will be scheduled after I meet with an oncologist.

I will try to see my liver team to see if I need any adjustments. Now it all starts getting real.

When I was told on Monday that the cancer was found, I got upset, but kept my cool, going around things as usual. Working, exercising, playing my Trivia Quiz…..

I told my husband, my mother and brother and my best friend.

Now it starts getting real. I started feeling scared and slightly frightened.

I ve just managed to balance things with my liver due to PBC, and now I have to fight again.

I wonder how all this will affect my liver autoimmune.

Thank you for your words of encouragement

I guess when I have more answers, I ll get some piece.