Endometrial cancer and CA 125?

I went to the hospital for my follow up appointment today (after emergency scan, biopsy and blood tests etc. for abnormal bleeding two weeks ago).

I saw a Registrar as my gyn/onc has been promoted to an elevated position in one of our most prestigious universities. I now know how Rosalie feels: it is awful to lose a trusted doctor. I know I will get another consultant gyn/onc and that he will be good as it is a centre of excellence but I am still upset.

The endometrial biopsy was inconclusive. The doctor tried to do another one but this time it was so painful that she gave up. The scan showed hyperplasia. The thing that really worries me is my CA 125 number.

My CA 125 was 80 when I was diagnosed with a gigantic ovarian tumour last year. The tumour showed no malignancy but was described as very rare: therefore the prognosis was uncertain. My CA 125 after surgery (LSO) was 9. It is now 306, much higher than when I had the tumour. I am really quite worried about this.

I have been scheduled for an urgent D & C and hysteroscopy, though "urgent" here (U.K.) means a wait of four to five weeks. The pathology will then take five to seven working days, so I am in for a long wait.

Obviously they are wanting to rule out endometrial cancer. Here is my question, and thank-you if you are still reading! Is the CA 125 used as a tumour marker for endometrial cancer in the same way as for ovarian cancer? I know it is not particularly accurate always for ovarian cancer. Is it the same for endometrial cancer, or even less reliable? Do any of you who have been diagnosed with endometrial cancer keep an eye on your CA 125 in the way the ovarian ladies do? Was a high CA 125 part of your diagnosis?

I know none of you can give medical advice: I am just interested in your experiences. I am feeling scared and quite fed up at the moment. Until one month ago, I was doing so well, feeling in excellent health after my surgery last year. Now this.

Jane.

Hi Jane,

Well, welcome to the "Lose your trusted doctor club". LOL

I do not know about ca125 numbers and endometrial cancer but I do know about them and ovarian cancer which is what I had.

To me, and I am definately not a medical person, the jump seems high. If my number went that high I would be concerned.

My number right after my hysterectomy but before chemo was 454. It traveled down to below normal with the chemo. Normal is 35 and under.

Let us know how you make out after seeing your doctor.

Rosalie

Hi, Jane,

I'm sorry your endobiopsy was inconclusive and that you'll have to wait for the D&C. Here's what I know about the use of CA-125 for endometrial cancer. I did not have the test before surgery. My gyn-onc ordered a CA-125 to follow me for the first two years post-surgery. Both my gyn-onc and radiation-oncologist told me that the CA-125 can be useful in detecting recurrences of endometrial cancer, although my understanding is that is somewhat less reliable for EC than it is for ovarian cancer. Many other women that I know who had EC were not monitored with a CA-125. My doctor did additional monitoring, including the CA-125, because of my elevated risk of recurrence.

Good luck with the D&C and I hope you are able to move the appointment date up.

MoeKay

Hi Latina

I am sorry you are having to go through this. I do have endometrial cancer. My CA-125 was 150 back in September prior to my diagnosis. It fell to 28 after surgery and the last number I heard was 7 after my first chemo treatment. I have now finished the chemo and I know that my doctor plans to follow the CA-125 levels with blood tests periodically. It's not a perfect indicator, but they will be watching it in my case.

I hope things work out well for you. Remember that other things can cause an elevated CA-125.

Limbo

I had the CA-125 prior to my surgery, when they were fairly sure that there was endo cancer. I don't remember anything more about it--if it were elevated I would have heard and I'd certainly remember that.

Since the surgery I haven't had to have the CA-125 anymore, but I have had CT scans yearly (pelvic-abdom, with and without contrast) and still have one more to go next year, which will be the 5-yr mark.

Sorry I can't be of more help.

Blessings.
Marlene

I should add that I also had endometriosis and about 15 fibroids so I guess it isn't entirely clear WHAT was causing the elevated CA-125 number. Bottom line for me is that it is now within norma limits and it will be checked periodically to see if it rises again.

My doc did CA-125 and CEA (tumor marker) blood tests. (Suspicion of ovarian cancer)...Also had several transvaginal ultrasounds... I know CA-125 and CEA are only part of the diagnostic tools to test for abnormalities...they're not necessarily definitive, by any means.

Hopefully, your doc did the CEA, and ultrasounds, as well...

Write down your questions, and get your answers until you're satisfied! Keep us posted!

TAH/BSO Dec '03 (adenomysosis, cysts) Had pain/bloating, low back pain

Oh, Jane, I'm so sorry you're going through all this!

I remember, before my surgery, when my doctor discussed the results of the CA125 blood test with me, she stressed that the CA125 can be elevated for a number of reasons, e.g., endometriosis.

I hope your wait isn't going to be too long. Please let us know how you're doing.

God bless.

I don't know if this helps or not, but I had endometrial cancer which was Stage IIIC, Grade 3, very aggressive.
They did a CA125 before my surgery, while the cancer was still in my uterus and in at least one lymph node. It was 33 which is considered normal.

They canceled doing another CA125 on me at my halfway mark in chemo treatments because they felt it wouldn't show them anything anyway.
I mean, it showed normal while I still had the cancer in my body so why test now and compare it to what, I guess.

Wishing you the very best,
nancy j.