Posting here on behalf of my wife. She had a rare ovarian neuroendocrine tumor (NET G1) found inside a mature teratoma in 2024. The NET focus was small (1.2 cm), Ki-67 <3%, no mitoses, but angioinvasion was present.
She later had a second, more extensive surgery with removal of the right adnexa, omentum, appendix and surgical staging. No residual tumor was found, peritoneal cytology was negative, and all follow-up CT/MRI scans since then have been clear.
Her most recent CT was only about 3 months before this latest CA-125 test, and it showed no evidence of recurrence.
Her CA-125 history was roughly:
36.5 before the first surgery (last days of period)
16.4 after the first surgery
21.3 after the second surgery
13.8
7.7
around 7 again this summer
now suddenly 46.5 (morning of the 2nd day of her period)
The latest blood test was taken around 8–15 hours after bleeding started. Her first two days are also quite painful/heavy.
Her oncologist was very concerned about the rise and ordered an urgent pelvic MRI, saying the blood results looked bad and that she was worried they might be missing something. Naturally, this scared all of us a lot.
Two days later she had both transvaginal and abdominal ultrasound, which were normal — no suspicious masses and no free fluid/ascites.
We’ve been reading studies showing that CA-125 can rise significantly during menstruation, sometimes around 2–3× and occasionally even higher. What worries us is that compared with her recent baseline of ~7, this is more like a 6× increase, although the absolute value is still only 46.5.
We’ve also read that CA-125 is not a specific or particularly reliable marker for this type of neuroendocrine tumor, so we’re also unsure how much this number actually reflects the status of the NET itself. From what we understand, CA-125 can sometimes rise for reasons unrelated to tumor recurrence, including menstruation and other benign conditions.
Has anyone seen CA-125 rise this much purely because of menstruation, especially with painful/heavy periods?
And does anyone have experience with CA-125 being used to monitor an ovarian NET/carcinoid? We’re trying to understand how meaningful this marker actually is for this type of tumor.
We understand that nobody here can rule out recurrence and she will absolutely have the MRI. We’re just trying to understand whether a value of 46.5 during the first/second day of menstruation can still reasonably be explained by the cycle, or whether with her cancer history we should be preparing for the worst.
