Hello everyone,
I don't know if I have a right to post here as I don't have an official diagnosis of ovarian cancer. That is actually one of my questions - since it cannot be diagnosed until surgery as biopsy is not recommended, is that the only time I will get a diagnosis of OVCA or do people get one sooner?
I am 39 and BRCA positive (strong family history of breast cancer, so I know lots about that, but no one has had OVCA). I have had regular transvaginal ultrasounds and CA125 tests for about 6-7 years due to my high risk status. My normal CA125 is 15. I've had cysts come and go, none suspicious or stressful.
I got pregnant late August and my dr sent me for a dating ultrasound (transvaginal). It found everything was fine, including my ovaries. 10 days later, I miscarried and was sent for another transvaginal ultrasound to confirm everything was gone. This one found a 2cm solid, vascular nodule on my right ovary. This led to a CA125 which is 139. I know CA125 can rise during first trimester, but everything I've read is that it should be more in the 50 range at that time.
I have been having symptoms of OVCA daily for about 2 months, but these overlap a bit with pregnancy symptoms, so I wasn't concerned initially. Predominantly: (1) Now I have daily right-side pelvic pain and it's getting worse. Pain level of a 1-2 last month is now a 3-4. and (2) I feel bloated daily and cannot wear button up pants but have no weight change. Other symptoms come and go (fatigue, constipation, back pain, indigestion).
I've been referred to gyno/oncology and for an MRI but will not even hear when those appointments will be for a week and likely the appointments will not be for about a month. Should I ask my dr for a repeat CA125 test in the interim? I know serial results are useful, but how far apart should they be taken? Anything else I should be requesting or could be doing while I wait?
Thanks for being willing to share your knowledge and experiences. You are all brave and strong!